FORWARD SIA
NEWS
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HEALTH
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DAILY
LIVING
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VOLUNTEERING
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INTERVIEWS
December 2018 Issue No. 148
MERRY CHRISTMAS FROM ALL AT SIA
SCI RESEARCH UROLOGY HEALTH SUPPORT FOR UNPAID CARERS
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december 2018 | Issue 148
welcome SIA IN NUMBERS
SIA APPOINTS NEW CEO Welcome to the December edition of Forward, which I hope you will enjoy reading. Over the last couple of months SIA has been busy recruiting for its new CEO and I’m pleased to announce that we have just appointed Nik Hartley OBE to this most important role. Nik was previously CEO at Restless Development and the founder of ‘Agency for Leaders in Social Change’. Nik will take up the post early in 2019 and I’m confident that he will bring a new dynamism to SIA with his extensive experience of the charitable sector and his understanding of the challenges that charities like SIA face. I’ve already been impressed by Nik’s zest and zeal to understand fully the challenges faced by SCI people. As your Chair, I am looking forward immensely to working with him in developing SIA into an even more effective ‘go-to’ charity serving our members and protecting their interests.
In 2017-18 …
158 volunteers supported the charity
SIA’s services, funding, campaigning, influence and profile as its CEO. SIA’s strategic direction will, of course, continue to be steered by its predominantly SCI Trustee Board, thus ensuring that SIA remains close to its members. On behalf of the Trustee Board and SIA staff team, I would like to take this opportunity to wish you all the very warmest of seasonal greetings, and good health and fulfilled lives for the New Year – which we at SIA will do our utmost to support through the vital work that we do. I invite you to join us on that journey!
Nik is not himself spinal cord injured, but I’m confident that we have appointed the person best equipped to drive forward
EDITORIAL & ADVERTISING Breda Duggan | TEL 01908 604 191 ext. 217 | EMAIL b.duggan@spinal.co.uk PUBLISHED BY Spinal Injuries Association, SIA House, 2 Trueman Place, Oldbrook, Milton Keynes, MK6 2HH | FAX 01908 208 547 | EMAIL sia@spinal.co.uk | FREEPHONE Advice Line 0800 980 0501 Mon–Fri 11am–4.30pm | REGISTERED CHARITY NO. 1054097
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of the volunteers have an SCI The volunteers gave
4,366
HOURS of their time to the charity
There are plenty of opportunities to volunteer with SIA throughout the year. To find out more about how you can provide valuable support to SIA speak to Jen Sims today. Turn to page 17 for more details.
DESIGN & PRINT Headlines Communications Agency | www.headlines.uk.com
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CONTENTS
www.spinal.co.uk
In this issue… DECEMBER 2018 | NO 148
Health 20 ESCIF congress 2018 22 Ageing 26 Walkers 30 Aquatic therapy
Daily Living 38 Luxembourg 40 Sport 42 Wheelchair basketball 44 Remap 46 Supporting unpaid carers 49 Parenting
Final Word
09 SIA News
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50 SIA Vice-President
08 SIA study day 09 Telephone counselling 10 Advocacy 11 Casework support 12 Party conference updates 14 Fundraising 16 Volunteering
Forward Focus 32 Be clear on cancer
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Forward subscription You can subscribe to FORWARD using one of the following methods: • ONLINE through the SIA shop at www.spinal.co.uk • TELEPHONE using your card details. Tel: 01908 604 191 • CHEQUE made payable to Spinal Injuries Association Name: ............................................................................................. Address: ......................................................................................... Postcode: ....................................................................................... Tel: ................................................................................................... Email: ..............................................................................................
Cheque and the order form should be sent to: Jackie Telfer, SIA House, 2 Trueman Place, Oldbrook, Milton Keynes, MK6 2HH TICK BOX: I enclose a cheque for: £20 (UK 1 year) £25 (Europe 1 year) £32 (Outside UK and Europe 1 year) £200 life subscription
Please tick if you would like to hear from us via EMAIL POST TELEPHONE . We will only use the information you have given us in the ways you have asked us to. If you would ever like to change the way you hear from us, please call 01908 208 541 or email supportercare@spinal.co.uk. To find out more about how SIA uses your data and protects your privacy go to www.spinal.co.uk/sia-privacy-policy.
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The views expressed in FORWARD are not necessarily those of the Spinal Injuries Association. Nor is SIA responsible for the use which might be made of the information provided. SIA does not endorse any commercial organisations and acceptance of commercial advertising or sponsorship, or editorial reference, should not be interpreted as an endorsement of the firms or products involved.
december 2018 | Issue 148
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december 2018 | Issue 148
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TELEPHONE COUNSELLING Turn over the page to find out how SIA’s Telephone Counselling service can help you.
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news | SIA NEWS
www.spinal.co.uk
NEW STUDY DAY Healthcare professionals are invited to attend our new study day, Continence Matters: Introduction to managing the neurogenic bowel in spinal cord injury, on 13 February 2019 in Milton Keynes. Since the introduction of our SCI Nurse Specialist service in 2016, Debbie Green and Carol Adcock have worked tirelessly to raise awareness of the importance of good neurogenic bowel management for SCI people, as this is a huge concern for our members. The successful introduction of the Managing the Neurogenic Bowel: Skills and Competency Training module for both registered nurses and HCAs, PAs and carers, has had a marked impact on this. To date, we have trained more than 100 people and demand shows no sign of abating. While we are obviously pleased to see so many nurses and care staff who are keen to make a difference to the care they provide to SCI patients, there is still so much more to do to raise awareness and promote good practice. As you will have read in the last issue, SIA’s collaboration
further information
with the Royal College of Nursing, Nursing and Midwifery Council, and NHS England, has produced some exciting results. The updated NHS England Excellence in Continence Care document was published which, for the first time, includes a paragraph on neurogenic bowel dysfunction. More recently, in July this year, NHS Improvement issued a Patient Safety Alert to highlight to healthcare providers the need for a policy to support bowel care interventions and prevent Autonomic Dysreflexia. To support this, we have also developed a draft policy template that NHS Trusts, care organisations and agencies can adapt for their use. To carry on this work, in February we are launching a brand new healthcare professional study day called Continence Matters:
KAREN MIKALSEN
Education and Training Co-ordinator E: k.mikalsen@spinal.co.uk
Introduction to managing the neurogenic bowel in spinal cord injury, which will use clinical presentations and product engagement to increase the delegates’ understanding of the impact of SCI on bowel function. It will differ from previous continence-related study days, in that a significant portion will feature product demo sessions with invited exhibitors, who will showcase irrigation products and other new developments in bowel management. It will be a fantastic opportunity for delegates to view new products and discuss them directly with the companies concerned. On the presentation side, our nurses will speak on areas in SCI relating to this subject, including appropriate management methods, and we are pleased to confirm that Julie Windsor, Patient Safety Clinical Lead at NHS Improvement, will present on the collaboration with SIA that led to the issue of the Patient Safety Alert. The day is aimed at healthcare professionals interested in, or working with, individuals with neurogenic bowel dysfunction as a result of SCI. They might be working in a continence role already, but not have much specialist knowledge of SCI, which is why we are sure this event will be popular.
The cost to attend this event will be £50 +VAT for NHS staff and £100 +VAT for non-NHS staff. For more information or to book a place, visit www.spinal.co.uk or contact me via k.mikalsen@spinal.co.uk or 01908 604 191.
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SIA CALENDAR DECEMBER 1 REBUILDING LIVES AWARDS NOMINATION PERIOD OPENS 3 VOCATIONAL CLINIC, STOKE MANDEVILLE 19 VOCATIONAL CLINIC, PINDERFIELDS 19 VOCATIONAL CLINIC, SHEFFIELD 20 VOCATIONAL CLINIC, STOKE MANDEVILLE 24 SIA CLOSES AT 5PM FOR CHRISTMAS AND NEW YEAR Advice line closes at 4pm
JANUARY
2 SIA REOPENS AT 9AM Advice line opens 10am 23 VOCATIONAL CLINIC, OSWESTRY 31 VOCATIONAL CLINIC, STOKE MANDEVILLE
FEBRUARY
20 VOCATIONAL CLINIC, OSWESTRY
SIA HEALTHCARE 21 DECEMBER FINAL DELIVERY DAY BEFORE CHRISTMAS 24 DECEMBER NORMAL SERVICE, 9AM-12PM 25-26 DECEMBER CLOSED 27 DECEMBER NORMAL SERVICE, 9AM-5.30PM 28 DECEMBER FINAL DELIVERY DAY BEFORE NEW YEAR 31 DECEMBER NORMAL SERVICE, 9AM-3PM 1 JANUARY CLOSED 2 JANUARY NORMAL SERVICE, 9AM-5.30PM
december 2018 | Issue 148
CAN TELEPHONE COUNSELLING HELP YOU? For the last eight years, SIA has provided a free telephone counselling service. In the last financial year alone, the service provided 180 telephone counselling support sessions to SCI people and their families and friends. Helen Smith explains how this confidential talking therapy can support you at any stage of life post-injury. I qualified as a clinical psychologist in 1989. I initially worked in brain injury and adult mental health, before joining the Stanmore SCI Centre on a part-time basis in 1998. I have provided psychological support to SCI people at the centre for the past 20 years and continue to do so. I also started working with SIA in 2010 to launch the Telephone Counselling service. It is available to SCI people as well as their partners and family members.
When people experience overwhelming feelings of stress, anxiety or depression, they know that they need additional support to help manage their current situation. Most service users are not clinically depressed or mentally ill, but they are struggling on a day-to-day basis. The cause of their stress can be varied – financial worries, loss of employment, the impact of SCI on relationships, family issues, managing pain, anxiety attacks, isolation, etc.
we ask for an evaluation at the end, which is anonymous and usually sent by email. Initially, I will get the person’s background information – age, level of injury, if they are linked to an SCI Centre, etc. If they are not an outpatient of an SCI Centre, I encourage them to request a referral via their GP. Once the main reason for support has been established, we focus on a particular area to be worked on, such as relaxation strategies, structuring the week to include activities that are more enjoyable and productive, possible pain management strategies, etc. If appropriate, I’ll also mention other SIA services that they might benefit from, or help offered by other organisations or online resources that they might want to read. Quite often the people I speak to have little knowledge of the support that is available. There is a perception that you take antidepressants or do nothing. But there is so much more support available. So, this service is as much about educating people about the different sources of help they can access, as it is listening.
WHAT TO EXPECT
HOW IT HELPS
WHY DO PEOPLE USE THE SERVICE?
During the first call the client is reassured that the telephone session is confidential and that SIA stores all personal information in adherence with the General Data Protection Regulation. We currently offer each individual up to three sessions lasting 45 minutes each. This approach has worked well for those we’ve supported to date and helps to keep the waiting list down. There is no charge, but
The most common feedback we receive
HELEN SMITH
Consultant Clinical Psychologist
is that it’s good to talk to someone who understands SCI. A GP can refer someone for counselling but the counsellors almost never know anything about SCI. The significance of bladder and bowel issues are therefore not understood. In general, counselling is about being listened to. Being understood has a beneficial effect on people, especially for those feeling very stressed and alone. The other benefit is being able to understand depression. It helps people to normalise it and understand that it’s a very common condition that can be managed.
SPEAKING IN CONFIDENCE
For most of us, there are things we would talk to family and friends about and there are things that we would prefer to discuss with a stranger. This is of particular importance for some of our clients due to their culture or where they live.
how to get in touch
Access SIA’s Telephone Counselling service via the Advice Line by either calling 0800 980 0501 or emailing adviceline@spinal.co.uk. The first session usually takes place within two-to-four weeks from making the initial enquiry. The sessions take place approximately fortnightly or monthly, but the service is flexible and there is no fixed structure. If you or someone you know would benefit from speaking to me about your concerns in confidence, get in touch today.
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news | ADVOCACY
www.spinal.co.uk
SIMON PINNELL
Advocacy Manager E: s.pinnell@spinal.co.uk
NOT ALL PLAIN SAILING It’s not every day that our Advocacy team gets involved in multi-national negotiations to resolve a member’s issue but, recently, our Advocacy Manager, Simon Pinnell, had such a case and shares the story here. We were approached by SIA member, Mark Linton, who was looking to book a weekend cruise from Newcastle to Amsterdam on DFDS Seaways. As many members will know, cruises are a very accessible way of travelling, hence Mark’s enquiry. The cruise is advertised as including a coach transfer from the port of Ijmuiden (where the ship arrives) into Amsterdam itself. However, when Mark contacted DFDS to explain he is a wheelchair user and to request an accessible cabin, he was advised that the coach taking passengers from the port to Amsterdam was not wheelchair accessible and he would therefore need to arrange his own taxi transfer to Amsterdam and back. Further enquiries revealed that the cost of that transfer would be more than the entire weekend cruise. Despite his
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best efforts, Mark had got nowhere in his complaint with DFDS and approached us to see if we could help. Initial conversations with DFDS reached the same conclusion as Mark had. Despite the fact that the cruise was advertised as ‘including transfers’, DFDS initially took the stance that the transfer was provided by a third-party company, Brouwers in the Netherlands, and was therefore not their responsibility. So began an epic saga! I found the Brouwers website and, while I don’t speak Dutch, I was able to ascertain that the company had a wheelchair accessible minibus. I emailed them to point out that they could surely use that if required. In the meantime, the approach to DFDS had been passed to their Legal Advisor, based in Tallinn, Estonia, who was sticking firmly to the stance that the
additional cost was out of their hands. Undeterred, I managed to find the email address for the CEO of DFDS and copied him in with my emails to the Legal Advisor and to Brouwers. Brouwers had, by now, said that all Mr Linton had to do was let DFDS know that he needed an accessible vehicle. Brouwers would then be advised and DFDS would settle the cost directly with Brouwers. This was swiftly denied by DFDS as a misunderstanding … that was, until the CEO’s office got involved. I was then contacted by a member of DFDS’s Customer Care team who told me that, as a result of the protracted correspondence and establishing a potential solution (i.e. the accessible vehicle at Brouwers), they would, with immediate effect, be changing their policy. In future, anyone who books
one of the weekend cruises where a coach transfer is included simply needs to let the company know and they will ensure that the accessible Brouwers vehicle is provided at no extra cost. Mark is now looking forward to his cruise and enjoying the Amsterdam Christmas festivities! Had all of this taken place in the UK, the Equality Act 2010 would have covered the situation. However, the position was somewhat complicated by the fact that it relied on suppliers in Europe and the actual transfer is in Europe too. That said, common sense prevailed in the end and it’s another success for SIA’s Advocacy team! We are here to support members with a wide range of issues relating to their SCI. To rehash a quote from the ‘80s TV series, The A-Team ... “If you have a problem and noone else can help, you know where to find them ... The SIA A-Team!”
further information
Contact us by calling 01908 604 191 or emailing advocacy@spinal.co.uk
december 2018 | Issue 148
Mandy Jamieson, NHS CHC Caseworker
S imon Legg, Social Care Caseworker
CASEWORK SUPPORT Part of the Advocacy team’s remit is to support SIA members with their social care and NHS Continuing Healthcare (CHC) funding applications. As many of our members will know, going through such processes can not only be extremely time consuming, but they can also be mentally and emotionally draining as a result of having to answer question after question about the impact of your SCI on your day-to-day life. The casework support we provide to members is increasing, which was part of the reason for the formation of SIA’s Advocacy team in 2017. We want to share with you the following letter we received from SIA member Ian Nixon, following the casework support he received from Mandy Jamieson – SIA’s Continuing Healthcare Caseworker.
further information
If you would like support with NHS CHC casework please contact Mandy Jamieson via m.jamieson@spinal.co.uk or call 01908 604 191 ext. 246. For assistance with social care, email Simon Legg, SIA’s Social Care Caseworker, at s.legg@spinal.co.uk
Dear Mandy As you are aware my eligibility for NHS CHC was withdrawn following an annual assessment in September 2017. I felt that this decision was unwarranted and unfair, so I appealed against it. Fortunately, I am a member of SIA and I am aware of the support given to members. I became a member of SIA in 2012 when I was in the Salisbury SCI Centre, undergoing rehabilitation following my injury. One of SIA’s Peer Support Officers visited the centre and helped me considerably. I am very grateful for his advice. When I contacted you following the withdrawal of CHC I was immediately reassured by your knowledge and positive attitude. We discussed at length how I should make representations throughout the appeal process and, as a consequence, I have always felt confident that a satisfactory outcome would be achieved.
You have supported me throughout the process, which has involved a Local Resolution meeting followed by a Local Review Panel, and I am truly grateful. You kindly offered me the assistance of Graham Anderson, SIA’s Peer Support Officer for the South West, at the two meetings and his presence and support were very helpful and contributed to the successful outcome we have achieved. Torbay and South Devon NHS Foundation Trust has now confirmed that my appeal has been allowed and CHC has been reinstated with eligibility backdated to the date it had been withdrawn. Other SIA members may suffer similar stressful situations with CHC and if my experiences can benefit others I shall be pleased to assist. Very many thanks for your support. Kindest regards, Ian Nixon
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news | PUBLIC AFFAIRS
www.spinal.co.uk
PARTY CONFERENCE UPDATES DAVE BRACHER
Campaigns Manager E: d.bracher@spinal.co.uk
The 2018 Party Conference season didn’t disappoint and once again threw up a number of highlights, lowlights and talking points, depending on which team you support. Theresa May’s entrance for her keynote speech to the tune of ABBA’s Dancing Queen gathered lots of comment and headlines, as of course did the few hours Boris Johnson spent at the Conservative Conference in Birmingham and the fringe speech he delivered. The Liberal Democrats were in Brighton and the speech by their leader, Sir Vince Cable, was well received by the party faithful. There is still a good deal of soul-searching about the party’s years in the Coalition Government and consequent loss of votes at the next General Election, as well as much speculation about how long Sir Vince will stay in charge and who his replacement might be. Liverpool welcomed the Labour Party and, as in 2017, there was a real buzz and high energy levels at their Conference, despite similar divisions in the Party over Brexit to the Conservatives and a General Election potentially being a couple of years away. Or, a couple of months, depending on who you speak to! The main topic of conversation that dominated all the Conferences was, of course, Brexit. It simply wasn’t possible for any of the speakers on the main stages, or really any of the fringe meetings, not to at least
acknowledge that the uncertainties and currently unresolved position of the Brexit negotiations impacts on all areas of Government and opposition policy, and therefore makes any sort of future planning very difficult. This is particularly relevant to any area that has a high reliance on workers from outside the UK – like the NHS and in social care for example. However, the business of Government goes on and time will tell what sort of Brexit deal our MPs will be asked to vote on and the potential impact on us mere mortals. SIA represented our members at a range of fringe meetings at the Conferences and was able to highlight a number of issues to influential parliamentarians like Sarah Newton MP (Minister of State for Disabled People, Health and Work) and Dr Sarah Wollaston MP (Chair of the Health & Social Care Committee). This has also paved the way for follow-up meetings in the future. We also took the opportunity to meet with some MPs who we’ve already established relationships with, and also some of our campaigning contacts in the charity
sector who we work closely with on issues of mutual interest and concern. Aside from Brexit, there were some reoccurring themes across the Conference fringe meetings and broad agreement about some of the ‘issues’, although the potential solutions to these issues were wide ranging. The importance of IT and IT-based solutions in helping to close the disability employment gap was a good example of this, as was the developing crisis in the social care sector. The long-awaited Green Paper on Social Care was due in the autumn and has now been promised before Christmas, although which Christmas wasn’t specified. And the staffing issues currently impacting on both health and social care were analysed and discussed at length, but without agreement as to the best way to resolve them. Overall, attending the conferences was another worthwhile experience that has opened the door for further meetings in the future. It also ensures SIA’s profile remains high as we continue to represent the needs of our members with politicians across all the parties.
MEETING WITH LORD O’SHAUGHNESSY
As an example of SIA’s increasing ability to engage with politicians at the highest levels of Government, Baroness Masham (SIA’s Founder and President) and Dan Burden (Head of Public Affairs) recently met with Lord O’Shaughnessy, the Parliamentary Under-Secretary of State at the Department of Health and Social Care. This was to brief him about SCI and discuss a range of issues. These include the vital importance of specialist care for SCI people to enable them to lead healthy and fulfilled lives, and the problem of winter bed closures at SCI Centres and the impact on the wider NHS. Lord O’Shaughnessy was very receptive to the issues raised and the meeting overall was very constructive. SIA is planning further meetings with senior politicians over the next few months as part of our campaigning strategy and will report on these in due course.
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december 2018 | Issue 148
RECORDING PIP ASSESSMENT INTERVIEWS At last, the possibility of a change of Government policy is on the horizon! SIA has been aware for some time of the issues around Personal Independence Payment (PIP) assessment interviews; applicants who asked for these to be recorded were previously advised that this was not possible. After considerable pressure, including efforts by SIA’s Chair of Trustees, Dr Rupert Earl, changes have recently been announced. In a written statement, Sarah Newton (Minister of State for Disabled People, Health and Work) announced a pilot scheme for the video recording of PIP assessment meetings. In her statement, she said: “A key part of our efforts to improve the assessment process will be making video recording of the PIP assessment a standard part of the process. We will be piloting videoing the assessment with a view to then rolling this out across Great Britain.” The Minister also highlighted her desire to continue to seek to improve the quality of assessments and work with claimants and user organisations when she said: “We have seen improvements in the overall quality of assessments since 2015, but we recognise there is still more to do to deliver the high quality of service those claiming PIP rightly expect. We will continue to work closely with stakeholder groups and our Assessment Providers to improve the quality of claimant communications, assessments, decision making and the overall claimant experience.
“We remain committed to working closely with claimants and the organisations who represent them (to identify and implement further improvements) and will continue to do so.” These changes are in part a response to a damning report published in February 2018 by the All-Party Work and Pensions Committee, which found ‘a pervasive culture of mistrust’ around the assessment process. The Committee also published a report on claimant experiences alongside it, setting out some of the stories of the 4,000 claimants who made written submissions to the inquiry, which was an unprecedented public response to a Departmental Committee.
EQUALITY & HUMAN RIGHTS COMMISSION SUCCESS Thirteen Clinical Commissioning Groups (CCGs) under threat of legal action by the Equality & Human Rights Commission (EHRC) have formally agreed to review their NHS Continuing Healthcare (CHC) policies. This fantastic result was achieved in no small part
through the efforts of Brian O’Shea, SIA’s Continuing Healthcare Adviser, who worked alongside the EHRC to ensure it fully understood the issues with these CCGs and SIA’s grave concerns about its ‘Settings of Care’ policies. The EHRC will formally review the 13 revised policies
as they are produced, to make sure they adhere to the recently-revised National Framework for NHS CHC. It will also continue to monitor the activities of a number of other CCGs and SIA will be working closely with the EHRC to ensure the needs of our members are being protected.
EQUALITY ACT ENQUIRY – THANK YOU! A big thank you to everyone who sent their views and thoughts to SIA about the difficulties faced by disabled people when they need to enforce their rights under the Equality Act 2010. It is quite clear from the passionate and well-articulated views expressed that the concerns of the MPs on the Women and Equalities Committee that the Equality Act “creates an unfair burden” on individuals who want to enforce their right not to be discriminated against, are correct. We received some really constructive and helpful feedback from SIA members about the difficulties they have experienced with the challenging, timeconsuming and stressful process, and we were pleased to be able to feed this into the formal submission SIA made to the Committee. The Committee is now considering all the responses, to understand better the complexities and issues ahead of publishing its report. SIA hopes this will put pressure on the Government to do more in supporting the rights of disabled people, and we will obviously continue to press for this at every opportunity.
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news | FUNDRAISING
www.spinal.co.uk
CHALLENGING SCI We are incredibly privileged to receive such fantastic support from our members. Year on year, so many of you choose to support SIA by fundraising or taking on a challenge. CHRIS MASSARELLA
Community and Challenge Event Fundraising Manager E: c.massarella@spinal.co.uk
Many of our fundraisers are families and friends of SCI people, with a large number wanting to get involved after sustaining an injury themselves. Steph Watson is one such amazing person. Having sustained an SCI as a result of a road traffic accident, Steph has volunteered with SIA since 2013 and, this year, was
a proud finisher of the Royal Parks Half Marathon. Steph has always been willing to support SIA in any way she can and her enthusiasm, eagerness and passion to help meant that a chance email from SIA led to her signing up to the race with #TeamSIA. Drafted in right before the deadline as our ‘super substitute’, Steph took the chance to run for SIA with both hands. She admitted: “If nothing else, signing up at last minute meant I didn’t have
Steph Watson
Thank you to ...
... Rupert Saunders for biking the Andes and taking on landscape shaped by volcanic activity, all in aid of SIA and raising over £760 in the process! Over the last two years, Rupert has cycled and walked more than 465 miles in support of SCI people and their families, including 100 miles in London this year!
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... Lise and Shaun, for being the first people to climb Kilimanjaro for SIA, while raising over £5,000 to help us change lives! Congratulations on your amazing achievement. We are so proud to have had the chance to support you throughout your incredible challenge. ... Freeths Milton Keynes, for all your hard work and
time to think twice about it, or change my mind.” Steph knew that running 13 miles would really test her limits but she didn’t let that stop her: “I spoke to my consultant, who made me aware that I would finish OK, but that I should expect a lot of pain afterwards. I still didn’t think about pulling out of the race, I just told myself I had to finish.” True to her word, Steph finished with an amazing time and so far has managed to raise more than £1,500 for SIA! She has also secured a very exciting Charity of the Year partnership with her employer – Buchanan Communications – to add to her success in the race. “It was amazing to finish the race, but even better to see how much support I got (including seeing the SIA team cheering me on at the finish line), and how much I managed to do for SIA. It was really tough – but I know first-hand how tough SCI people have it – and I am so, so proud to have done something that I know really will help change lives.”
support over the last few months – hosting bake sales, bagel breakfasts and much more. It is fantastic to have been selected as your local Charity of the Year and we look forward to hearing about your fundraising activities throughout 2019! We’d also like to say a massive thank you to the 12 amazing people who
JOIN #TEAMSIA
Building off the back of the success of #TeamSIA in 2018, we are already looking ahead to next year’s events. There will be plenty of opportunities for people willing to push themselves, by either taking on their first challenge after injury, supporting a family member or friend, or just looking to help make sure SIA is there for everyone who needs us in 2019 and beyond. We have everything from a 10k run to a trek to Everest Base Camp – so there really is something for everyone! All you need is determination and passion to help support SCI people, and we will do the rest. So, if you want some inspiration or have an idea of what you’d like to do but need some help, let us know and we will happily find the right challenge for you! Visit the fundraising section on www.spinal.co.uk today for more information. Rupert Saunders
completed the Berlin Marathon on behalf of SIA. Collectively they have raised more than £22,500! This huge sum of money will directly support SCI people via one of our many vital services.
december 2018 | Issue 148
Left to right: Josh Patterson, SIA’s Simon Pinnell, Paralympian David Weir, SIA’s Carl Martin, and Ben Tansley
THE POWER OF FRIENDSHIP Not to be outdone by Steph, Ben Tansley, who sustained an SCI himself in 2017 as a result of a road traffic accident, decided that he would also challenge himself on behalf of SIA, by taking on the Berlin Marathon with a friend … both in day wheelchairs! In September this year, Ben completed the Berlin Marathon just one year after sustaining his injury. Ben was on his way back from meeting his friend Josh Patterson’s new baby, when he was involved in a road traffic accident that would later show how determination and friendship could triumph in the most challenging of times. Ben first came into contact with SIA at the Sheffield SCI Centre where he met SIA’s Peer Support Officer, Andy Wharton. As a gym owner and keen fitness personality, he got in contact with our community and challenge fundraising team after leaving hospital. From day one, Ben wanted to take part in a marathon and use his accident as a way to show others that you can do anything you set your mind to. Ben wanted to reinforce the message that
Putting the FUN into our new fundraising packs! To help make your challenge and fundraising efforts even more successful for the New Year, we will soon be launching our brand-new, free fundraising packs that contain everything you need to kick-start your efforts in
life goes on after injury – and a fulfilled one at that. He asked his best friend, Josh, to join him in raising awareness and funds for SIA. As a sign of solidarity, Josh wanted to take part in the marathon using the same wheelchair as Ben. So far, Ben and Josh have raised over £12,500! The story of their solid friendship and Ben’s strong-willed personality is one that continues to grow. Ben’s gym, Heroes, based in Kings Lynn, was made accessible for wheelchair users and since his life-changing accident, he has had the opportunity to work with four new members who are wheelchair users – two of whom have since contacted us to ask about SIA challenge events. He has also encouraged his 26,000 Instagram followers to try something new and challenge themselves. We’d like to say a massive thank you to Steph, Ben and every single one of our supporters who have put in the effort and hard work to raise funds for us this year, reaching a grand total of almost £200,000 as part of #TeamSIA! We would simply not be able to support SCI people without your help.
2019
Community & Challenge Events DECEMBER Whether you need some motivation to get off the couch after a long Christmas break or just fancy embracing your inner daredevil next year, our 2019 events offer something for everyone.
APRIL
7 Manchester Marathon 14 Paris Marathon 28 London Marathon
MAY
8-12 SIA’s Eastern European Cycling Adventure
JUNE
1 SIA’s Summer Skydive Day
AUGUST
4 RideLondon 100
SEPTEMBER
29 Berlin Marathon
OCTOBER
2019. As well as a handy how-to guide covering all the things you need to know to make your event a success, the pack also includes sponsorship forms, a guide to online giving, an A-Z of fundraising ideas, a poster, balloons and much, much more! We also have packs available to help you set
up a bake sale, a fish and chip supper, a sweepstake or even to help you ‘Go the Distance’ with your own sponsored walk or run. We have everything you need to put on an amazing event to raise funds and awareness for SIA – while having a great time too!
13 Royal Parks Half Marathon 26 SIA’s Spooky Skydive Spectacular
DECEMBER
Santa Races (TBC) For full details on what’s in store and how to register, visit www.spinal.co.uk
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NEWS | VOLUNTEERING
www.spinal.co.uk
TURNING A NEGATIVE INTO A POSITIVE In the last issue of FORWARD we introduced you to some of our new Peer Support Volunteers. Read on to find out a bit more about Will Pike and the benefits that he gets from volunteering. Q. How long have you been volunteering with SIA and what made you decide to support the charity? A. I applied for a volunteer role this year and have been in the position for six months. I decided to join SIA because I felt that I would be able to make a positive contribution to those coping with a new injury. Q. How important was peer support to you in the early days following your injury?
without interrupting the chat but, wherever possible, I try to introduce them to SIA’s network of services. Q. What do you think are the benefits of volunteering? A. For me, there are many benefits to volunteering with SIA. Firstly, as I tend to work largely from home, it’s great to have something that gets me out of the house. Secondly, having performed various roles in the third sector over the past few years, it feels really good to be in a role that lets me connect directly with the service user – it’s so much more rewarding. Finally, I think there’s an aspect of
started because of a film I made to highlight accessibility problems on A. At first, during my rehab at the the high street. The film went ‘viral’ Stanmore SCI Centre, I wasn’t and presented me with a interested in conversing number of news and TV with the Peer Support opportunities, which in turn Volunteers. However, after has led to a semi-regular a month or two had gone spot on the Sky News by, I clearly remember Sunrise Papers programme. speaking with a volunteer I’m not sure where this about his car journey to path will take me, but Stanmore. I had never heard I’m pleased to be able to of hand-controls, so this was represent wheelchair users “I think there’s an aspect of a major revelation, which in the mainstream media volunteering with SIA that certainly gave me a spark of while furthering my own means I have another degree of optimism about the future. ambitions. I’m also really interested in electronic ownership over my injury – it Q. What does your really is the definition of turning music production and role as a Peer Support have recently been taking a negative into a positive” Volunteer involve? lessons to improve my skills, which will hopefully A. It’s early days and I’m encourage me to actually volunteering with SIA that means I have still trying to establish a routine, but finish a track. One day I’d love to get another degree of ownership over at the moment I visit the Stanmore something pressed to vinyl. Occasionally, my injury – it really is the definition of SCI Centre on a fortnightly basis to my girlfriend and I like to visit Buttercups turning a negative into a positive. speak with the patients there. My Peer Goat Sanctuary in Kent. Other than that, Support Officer is Lady-Marie DawsonI love spending time with my friends and Q. When you’re not volunteering, Malcolm, so anything else I can do to family. My brother recently what do you like to do? ease her workload is a bonus. For now added a second child to though, I’m simply looking to improve his brood in Suffolk, so my active listening skills so that I can I’m looking forward to A. Outside of volunteering, I try to live a have more meaningful conversations varied life. I created a website (willpike.co) spending more time with the patients I meet. I’m still getting getting to know my earlier this year to promote my own to grips with recording information new nephew, baby Felix. brand of disability activism, which all
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december 2018 | Issue 148
YOUR VOLUNTEERING ROUND-UP JEN SIMS
HR & Volunteer Coordinator E: j.sims@spinal.co.uk
Cornflower Ball 2019
Plans are well under way for SIA’s Cornflower Ball 2019 and as always we rely on the support of volunteers to help on the evening. We are looking for energetic, reliable and engaging individuals who are happy to assist on 28 March at the Principal Hotel, Manchester. Our team has the skills, enthusiasm and support to ensure you have an enjoyable and fulfilling experience volunteering with us. If you would like to get involved and play a significant part in the evening’s fundraising activities, then I would love to
hear from you. We will provide a meal and can cover travel expenses within a reasonable distance to the venue. Email me at j.sims@spinal.co.uk or call 01908 604 191.
Christmas collections 2018
This December we’ve been busy doing a spot of fundraising at various train stations in and around London. Thank you to all those volunteers who have kindly given up their time to support this important activity. If you fancy joining us please get in touch and we’ll let you know which stations we have collections at this month. Why not rope in some colleagues or friends to help us spread some festive cheer as part of our #kindchristmas campaign? We look forward to hearing from you!
INNOVATIVE WHEELCHAIR WINS DESIGN COMPETITION 2018 saw the Spinal Injury team at Bolt Burdon Kemp launch its inaugural student design competition, ‘Getting Back on Track’. BOLT BURDON KEMP
www.boltburdonkemp.co.uk T: 020 3504 8822
The purpose of the competition was for UK-based university students to design a product aimed at improving the lives of SCI people. Bolt Burdon Kemp, which acts for people with an SCI and helps them get their lives back on track, was looking for a design that was both unique and practical, and which really considered the needs of those with SCI. Kristen Tapping, a second-year product design student at London South Bank University, produced the winning design – an innovative wheelchair, ‘Moveo’, which is designed to propel the user forwards by them pushing backwards, exerting less force and effort than a normal wheelchair. The wheelchair was designed especially for SCI people and makes moving easy through gear reduction, lightweight yet high-strength materials, and carefully designed to give the user more grip.
With comfort in mind, intelligent textiles also help to regulate the user’s body temperature. Kristen’s design was judged the winner by a panel of experts including Raquel Siganporia, head of the Spinal Injury team at Bolt Burdon Kemp, Dr Ross Head, Product Design Manager of Cerebra Innovation Centre, Ian Hosking from Wheelchair Rugby Experience and Christa Dyson, Vice Chair of SIA. Raquel said: “I was really impressed with a great number of the entries, but Kristen’s showed real understanding of the needs of SCI people. For many people with an SCI, their wheelchair is the most essential piece of equipment they use every day. To come up with an innovative and viable alternative is no mean feat. “In my role I see people who have sustained life-changing SCIs – be it from an accident or as a result of clinical negligence. In these instances, my client needs to adjust to their injury, and their new mobility needs, and get back to their ‘new normal’ as soon as possible.
Make 2019 the year to volunteer!
Did you make any New Year’s resolutions for 2018? Did you find it difficult to stick to them? If so, you’re not alone! In 2017, one in five people failed to keep all of their resolutions in just the first week. Research shows that we’re more likely to keep resolutions that have a positive effect on us or others. Volunteering is a great way to learn something new, take on a new challenge or explore a new career route. We’re extremely grateful for the support we’ve received from our volunteers this year and would love to welcome more people to the team in 2019! Get in touch with me today to find out how you can support SIA and the wider SCI community.
Innovations like Kristen’s Moveo can really help.” One of the aims was to raise awareness and show having an SCI is more than just the inability to walk. Kristen said: “I have come to understand that the day-to-day problems facing SCI people – often their inability to use their hands, properly regulate their body temperature, lack of upper body strength, and overall lowered immune system – make them different from the typical wheelchair buying market. I was first inspired by trying to separate the wheel from the rail, to make sure the user’s hands don’t get dirty. While I am not able to address every single issue that comes with the injury, I designed this wheelchair to merge functionality and aesthetics, while also facilitating the user’s daily routine.” Bolt Burdon Kemp is delighted with the design and hopes the features can benefit those with living with SCI.
Kirsten (second from right) with the judging panel
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news | CORPORATE SUPPORT
www.spinal.co.uk
THINKING ABOUT CHANGING CARE PROVIDER? Increasingly, SCI people are being given a greater say in choosing the right care provider for them. It can be a big decision but no one should have to remain with an unsuitable provider. Here is Ben’s experience: “I was involved in a road traffic accident in 2006, sustaining an SCI at C4/5 level (complete). Upon discharge from hospital in 2007, my care package had been set up to be jointly funded by NHS Continuing Healthcare and my local authority, and a care provider was selected to cover all my care needs. “Ten years later my life was being ruined by appalling levels of care, with a total lack of empathy shown towards myself and my needs to try to live as normal a life as possible. There was no settled care team and different staff turned up every day, sometimes not at all!
These were mainly agency staff who accepted the shift, regardless of whether they were competent or not. Recruitment only found me one applicant in a year of searching. Billing and payroll messed up every invoice. “My concerned dad contacted SIA. I discussed my situation with an SIA representative and, with their encouragement, researched online, taking the plunge of contacting TCC. From day one, the difference in approach was noticeable. They answered the phone promptly, listened and assured me the company would be able to support my care needs.
“The change in attitude made me realise how bad things had become and highlighted that there was a route out. TCC put together a proposal, which I shared with my joint funders, and we agreed to proceed. “The handover process is much simpler than you could imagine. I worked closely with TCC to set up a care plan and job advertisement. We had a successful response and interviewed eight potential candidates. I selected who I wanted employing on my team and gave notice to my previous care provider. I also said that I wanted to take one of my staff members with me to TCC. This was a very smooth process.
REG PERRINS
Commercial Director, Total Community Care
“My team of staff completed the mandatory TCC induction-training course and I set up the first working rota. “Eighteen months on and I have a care team of three people working to my personalised rota to fit in with my life requirements. I haven’t seen any agency or unfamiliar staff. My monthly invoices are correct and my staff get paid on time and correctly. Long may this continue in making my life hassle free and with a much higher level standard of care.” Ben Joyce Complete SCI, C4/5
further information
Find out more about TCC at www.totalcommunitycare.co.uk. Telephone 01858 469790 or email info@totalcommunitycare.co.uk
SHOULD AULD ACQUAINTANCE BE forgot ...
DAVID LOXTON
Director of Fundraising & Marketing E: d.loxton@spinal.co.uk
There is an adage: “Make new friends but keep the old, those are silver, those are gold.” Here at SIA, all our friends are gold and it puts a big smile on our faces to send a wealth of warm wishes to everyone who has supported us over the year.
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We are so fortunate to have friends like you who support us in so many generous ways. You buy Christmas cards, give a donation to SIA every month and support our appeals. You’ve picked up your wheelchair gloves or running shoes and persuaded all around you to sponsor you in some feat of endurance, baked cakes and held raffles. And some, thinking about the need to support SCI people in the generation to come, have very thoughtfully decided to include a gift to SIA in their Will. We absolutely cannot do what we do without you and
your kindness. Less than 1% of our funding comes from statutory sources. Every year, we have to raise all the funds we need to deliver the Peer Support service, SCI Nurse
Specialist service, Advice Line and all the other work that we do. So a big thank you and we wish you all a happy Christmas and a bright New Year!
december 2018 | Issue 148
DO YOU HAVE A QUESTION FOR OUR ADVICE LINE? CONTACT US ON FREEPHONE 0800 980 0501.
HEALTH AGEING
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WALKERS
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SCI
RESEARCH
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AQUATIC
THERAPY
TAKE THE PLUNGE Turn to page 30 to read about the benefits of aquatic therapy.
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HEALTH | ESCIF
www.spinal.co.uk
ESCIF CONGRESS 2018 The 14th annual European Spinal Cord Injury Federation (ESCIF) Congress took place in August 2018, in the city of Prague. Ageing Well Consultant Joy Sinclair was in attendance and provides an overview of the event. ESCIF was formed in 2006 with the aim of improving the quality of life for people in all parts of Europe who are living with SCI. ESCIF now represents 33 national organisations from 28 European countries. Each year, ESCIF hosts a congress in a different member country that focuses on a particular theme. The theme for this year’s congress was ‘Peer Support, a Unique Resource’. Gunilla Ahren, from the Swedish Association for Survivors of Accident and Injury (RTP), opened the Congress and Jiri Kriz, President of the Czech Spinal Cord Society, gave the welcoming address. The structure of this year’s Congress differed from previous years, with the focus very much on working groups rather than individual lectures. One of the keynote speakers, Lucy Robinson, runs the Peer-led Patient Education service at Stoke Mandeville Hospital. This service aspires for each patient to learn the skills needed to live successfully in the community. Lucy previously worked with Back Up in designing and delivering peer-led activities. During the congress, Lucy chaired and moderated many of the sessions and workshops. Christel van Leeuwen PhD works at Rehabilitation Centre De Hoogstraat in the Netherlands as a psychologist and researcher in the spinal cord department. Her research focus is on the implementation of psychological factors in treatment programmes of SCI. Christel delivered an interesting presentation entitled ‘Peer supporter role in adaptation process in context of different coping strategies types’.
The workshops
During the workshops the delegates shared their personal experiences of being a peer supporter and peer counsellor. Also discussed were the various approaches to peer support and the ways in which a peer support programme could be organised so that it would be flexible enough to be rolled out to all member countries.
Presentations
There were short presentations from several member countries giving a brief overview of the numbers of newlyinjured people per year, the cause of injury, the gender split, the average age of admission to hospital and the number of specialist SCI centres in their country. Some interesting facts and figures were revealed in these presentations, but it would appear that some parameters don’t change significantly. Of the statistics presented at ESCIF: • The gender split of people with SCI is 70% male to 30% female • One of the main causes of SCI in recent years has been falls, having overtaken road traffic collisions as the main cause of SCI in most countries • Incomplete injuries now make up a larger number of SCIs, and many of these injuries are due to an illness or condition. What is surprising in comparison to years ago is the average age at which people are injured, with one
For more information about ESCIF visit www.escif.org
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JOY SINCLAIR Ageing Well Consultant
member country reporting that 60 is now the average age of admission to an SCI Centre. Statistics from the UK’s Annual Statement of the National Spinal Cord Injury Database 2016-17 concur, highlighting that the biggest age group of new injuries admitted to SCI Centres in England between 2016 and 2017 was 6569 years, and 62% of all admissions were over the age of 50.
Skoda Auto
Skoda was the main sponsor of the congress and with its ‘Barrier free mobility with Skoda Handy’ programme, it offers help with the purchasing of and the adaptation of cars for people who are holders of disability certificates. Skoda also offers support to young drivers and takes a keen interest in driver safety and technical education.
Healthy ageing
The event saw the launch of the ‘Healthy Ageing with SCI’ section of the ESCIF website – www.escif.org. Topics to feature online will include further specific SCI-related information health issues, as well as If you’d like to know more general health more about SIA’s Peer and lifestyle subjects Support service, visit www.spinal.co.uk or relevant to ageing call 01908 604 191 with SCI. today.
december 2018 | Issue 148
TACKLING THE CHALLENGE OF STAYING FIT IN THE NORTH: A COLLABORATIVE APPROACH JILL KINGS
Clinical Director Neural Pathways (UK) Ltd www.neural-pathways.com Part of the Active Assistance Group www.activeassistance.com
The struggle to stay fit and maintain physical skills and strength is a challenge for everyone living with SCI. Initiatives such as the Aspire Leisure Centre and InstructAbility frameworks have led the way, but what do you do if you live in an area where such initiatives are not available? Deborah Harrison, Specialist Neurological Physiotherapist at Neural Pathways told us: “I have worked with SCI people for more than ten years across the North of the England. And despite innovations in technology assisted rehabilitation, my clients still can’t find a gym that knows how to meet their physical needs.” Part of Deborah’s role at Neural Pathways is to assess and prescribe Functional Electronic Stimulation (FES), FES-assisted exercise kit and other tech robotics. “With more and more equipment available it often takes specialist knowledge to match the equipment with the client’s needs,” stated Deborah. She added: “It can also be heartbreaking to see how far out of my clients’ financial reach some of this equipment is, even though I know how beneficial it will be.” In an attempt to address this unmet need, Deborah
and Neural Pathways have been working to support a Gateshead-based initiative. The Pop-Up Gym, a not-forprofit charity that relies on donations, is the brainchild of Drew Graham. Drew, a C4 tetraplegic, describes how before his accident in 2014: “All I knew was running and athletics. To go from that to being in a wheelchair 24 hours a day was quite a big shock.” Borne out of Drew’s personal experience of life after his SCI, the charity aims to provide a rehabilitation and fitness maintenance service for SCI people across the North of England. Drew and the charity’s Trustees have worked tirelessly to secure funds and, by working across her wide network of contacts, Deborah has also helped to access specific equipment donations from around the UK. The right venue was key. As well as the gym needing to be readily accessed by members in wheelchairs, Drew wanted to create a fun and pleasant environment, so members
would be comfortable when exercising, without feeling self-conscious. Once the right venue was found and enough funds were secured to employ a personal trainer to induct members to the equipment and follow physio programmes overseen by Deborah, the first Pop-Up Gym was officially opened in Gateshead, in January 2018. Gym members can use a variety of specialist equipment including RehaMove 2 leg and arm FES bikes, EasyStand standing and glider frames, an Equalizer 6000 wheelchairaccessible multi-gym, as well as other more standard gym equipment such as free weights. There is also a private treatment room for one-to-one sessions and Neural Pathways continues to support the service by offering programme reviews, FES reviews and other specialist treatments such as neuro-acupuncture. To date, more than 50 clients have used the gym and membership grows
each week. Drew is over the moon with member feedback and said: “A lot of our clients have never used any of this stuff before.” He also describes how many people with paralysis have “been able to see their legs move for the first time since their accidents by using our FES bikes” and that there have been many tears shed. As well as creating a safe and comfortable place for SCI people to exercise effectively, Drew has always wanted to create a community, where people facing similar issues can connect and provide one another with support, saying: “We believe the sense of community is just as important as good therapy.” So, what’s next for the Pop-Up Gym? Drew has ambitious plans: “There are people we know who we can’t yet reach. So, as well as increasing the number of PopUp Gyms across the North, we want to offer a mobile service to take specialist exercise kit into the wider community.”
For more information about Pop-Up Gym visit www.popupgym.org.uk
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HEALTH | AGEING
www.spinal.co.uk
THE POWER OF LETTING GO
Having dealt with a wide range of emotions in the years since his injury, Martin Duffy believes that a change in perspective is the key to changing your circumstances for the better.
MARTIN DUFFY SIA member
Here’s an expression all of us who’ve experienced an SCI will relate to: “You never know what’s around the corner in life.” That’s exactly how I feel about ageing with an SCI. I’m now 43-years injured and swapping my manual wheelchair for a powered chair. It’s brought back lots of memories and stresses that I thought were behind me. I seldom think about my accident in 1975 and certainly don’t celebrate its anniversary every year. It’s just not on my radar. What happened just is. I’ve got on with life in the four decades since.
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I experienced loads of anger, fear, frustrations and mixed emotions for years after breaking my back. I was constantly bereaved, yet never really understood what was happening or how to deal with my body as it is now. Yes, I moved on after leaving Stoke Mandeville, but letting go of my manual wheelchair, which I’ve relied on for 43 years in favour of a powered chair, has brought up a new set of stresses. I feel vulnerable and worried I’m losing control once again. Back in the ‘70s when I broke my back, I dealt with my fears by throwing myself into work by day, while consuming pints of beer by night – it’s what I justified, at the time, as working hard and playing
hard. Yeah right. Who was I kidding? Thankfully, after years of messing up relationships, both with others … and with myself, I found a better way to heal. I took a zillion courses on releasing suppressed emotions and learned to meditate. Much to my surprise, I found a new peace. I discovered that life really is so much easier when I get out of the way and allow it to be easy. No one was more surprised than me. Which, once again, only goes to prove we never know what’s around the corner in life. However, I can’t run away from my damaged joints and my need for a powered chair today. I just don’t have the energy I once had. Not to mention I quit drinking years ago.
december 2018 | Issue 148
I can’t imagine rolling around in a powered chair but I am looking forward to the respite it will give the damaged joints in my neck, shoulders and hands. So, here’s how I’m letting go of the stress and dealing with the entire process.
Allow it to be easy, Martin
I made a decision to allow the transition to be easy. To go with the flow and let go of resisting the inevitable. To let go of judging myself for giving up my manual chair. And I especially decided to let go of seeing it as a failure. This may sound strange, but the best decision I made to help me cope with the transition is just to love it. I made a decision to love the experience unconditionally, despite the way it is. And guess what, it’s working. I’m much happier, feel less stressed and, amazingly, the bureaucracy has melted away.
There’s love around this corner ...
Here’s my first gain – or should I say my first realisation. I’m much more relaxed about accepting a new wheelchair into my life. I’m certainly a lot more optimistic and positive than I was in 1975 at Stoke Mandeville when the doctors gave me a wheelchair for my 19th birthday. It now seems I’m destined to get a new powered wheelchair for my 62nd birthday. Hey ho. As I approach this new milestone in my life, I do so with a more open mind and less fearful heart. I no longer view transitioning to a powered wheelchair as a negative experience. Nor do I harbour non-loving feelings about the prospect. Yes, of course, that daft voice in my head that chatters away all day is doing its best to fill me with doubts and fears. I keep hearing thoughts like: “How will you manage? That’s not a wheelchair, it’s a tank. You’ll have to give up your car and get a van. You’ll never get that powered chair in the loo.” And so on.
Does that mean I’m overjoyed by the prospect? No, of course not. I’ve just come to appreciate that whatever I choose to resist in life is what I always seem to attract more of. Not less. There was just one problem. I didn’t have the £6,000-£9,000 I’d been quoted for a new powered chair. So, here’s what I decided to do. And yes, you’re going to think I’m really strange now, but before you leap to judgement, let me tell you, it worked.
Letting go has saved me thousands
I sent love to my new powered chair. Yes, you read that correctly. Here’s how it went: “Powered chair, I love you. I really, really love you unconditionally.” And I also sent love to money: “Money, I love you. I really, really love you unconditionally.” More than just a simple mantra or affirmation, I did so with a clear intention that it was already perfect. I did not envisage problems such as lack of money or my flat is too small for a powered chair.
Instead, I just decided to view the entire situation as perfect, despite the way it is. And amazingly, my resistance has disappeared and the money to pay for my powered wheelchair has shown up in my life! Which only goes to prove … yes, you’ve guessed it – you never know what’s around the corner in life. The powers that be (Hampshire Wheelchair Service) have pulled a complete one-eighty. After initially telling me I didn’t qualify for a new powered chair and that they couldn’t help, they suddenly changed their mind and offered to fund the purchase of a new Invacare TDX SP2 powered chair. Yippee! Love really is the answer. I am very grateful to Lyn Janes, Occupational Therapist at Hampshire Wheelchair Service, for all her help and support. Learning to let go and love really does pay dividends. As I age with an SCI, learning to love everything in my life really is the answer. Now, I’ve just got to love the PIP application process. That’s the next thing around the corner.
“As I approach this new milestone in my life, I do so with a more open mind and less fearful heart. I no longer view transitioning to a powered wheelchair as a negative experience”
Witness
I’ve found the best way for me to manage is to simply observe (and yes, love) these negative thoughts. It’s just my mind trying to scare me and throw me into a panic about what’s around the corner in life. I’ve taken the view it’s all perfect and decided to let go of resisting a new powered wheelchair in my life.
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HEALTH | WALKERS
www.spinal.co.uk
FURTHERING MY REHABILITATION Jo Grover sustained an incomplete SCI, which initially left her with complete paralysis from the neck down. Through a dedicated rehabilitation programme undertaken during her time in hospital, Jo was able to regain enough physical function to enable her to walk again. Here, Jo shares her rehabilitation journey, both in hospital and in her local community.
JO GROVER
SIA Peer Support Volunteer
During a routine appointment in April 2014, I mentioned to my doctor that I had started to feel pins and needles in my right hand index finger. By June 2014, I could feel the pins and needles in both hands and sometimes it would run up to my elbows. It was never debilitating or painful; it altered my sensation of holding things. After an MRI showed prolapsed discs at C3/4 and C5/6, it was decided that surgery would be needed to resolve the issues. The operation would focus on the prolapsed disc at C3/4, as this was causing my symptoms. I underwent surgery in September 2014 at the Walton Centre in Liverpool. Unfortunately, there were complications during the operation, which resulted in a spinal stroke/bleed. When I woke, I could not feel anything from the neck down and it was explained that I was showing signs of complete paralysis. Over the coming days and weeks in the intensive care unit and high-dependency unit, I gradually started to get sensation, feeling and slight movement down the right-hand side of my body. After three weeks in the Walton Centre neurological hospital, I was transferred to the rehabilitation unit at Seddon Suite in St Helens Hospital. I went on to spend six months in the ‘suite of dreams’ and completed daily physiotherapy and occupational therapy to treat my incomplete SCI. During my hospital stay, I really missed my family. My little girl Jessica had just turned five and Max was three. It was very hard not seeing them every day but Dave, my husband, kept everything as
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Jo in 2015 on Trearddur Bay, Anglesey
“It is definitely a continuing journey and my health and mobility are still changing after four years” normal as possible for them. My mum and dad were close by to help as much as possible too. By December 2014, I started working towards home visits, with the aim of spending Christmas Eve and Day at home. The occupational therapy team assessed my house and helped with adaptations to aid me in my return, such as grab rails and other equipment. As our house had
just the one living room downstairs, this became my bedroom, bathroom, living space, dining area and family room all in one. It wasn’t ideal, but I was home for Christmas and that was the most important thing. When I was discharged in March 2015, I had regained enough feeling, movement and power to access all areas of my house. I could walk with a walking stick inside, but I needed a Zimmer or delta frame outside on the uneven pavements. I could only walk a short distance outside, so I used a manual wheelchair for longer distances. However, as I have partial paralysis down the left side I could not power the wheelchair myself, so tended to only use that when someone could push me.
december 2018 | Issue 148
The first year after my SCI seemed to race past! With being in hospital, learning to sit up, stand, walk, climb stairs, dress and clean myself, my recovery was so visual and noticeable. Everyone could see how well I was doing and how far I had come. Living with tetraplegia four years down the line, the changes I make now are few and not as noticeable, but still just as important to me. To aid with my recovery and once the community physiotherapy had stopped, I decided to join a gym. Having never been a member of a gym, at first I was very nervous. I couldn’t imagine what I would be able to use and what, if any, effect it would have. It turned out to be brilliant and I still attend twice a week. I try to get into the pool each time I go as I find movement in water is so much easier and very soothing. The weightlessness of being submerged gives my muscles the chance to completely relax and recover. I have also tried various classes through the gym, such as water Zumba, water aerobics and seated yoga. All are great motivational activities, plus you can meet new people and share experiences. When I joined the gym, I also decided that I needed to lose the weight I had
Jo in 2018 with her children
gained as a result of not being mobile. I joined Slimming World in January 2016 and by December 2016, I had lost threeand-a-half stone. I am happy now with my weight and find that attending class regularly along with going to the gym keeps me focused, healthy and motivated. As a ‘walker’, I do have complaints and off days. I have bladder and bowel issues and recently started using a peristeen irrigation system. My left hand and toes on my left foot claw and I have Botox injections to help with this. Due to spasticity, my gait pattern is
awkward and as a result, I fall often. I’ve had two serious falls resulting in hospital treatment, but generally I stumble and just appear unsteady on my feet. It is definitely a continuing journey and my health and mobility are still changing after four years. I now drive an adapted car and have a mobility scooter, both of which afford me my independence. I like to keep busy so I volunteer through SIA Merseyside, which is a wonderful group that I joined just over a year ago. We meet every month and discuss relevant topics for people with all kinds of SCI, offering advice and support. Following on from this I joined SIA as the North West Peer Support Volunteer in June this year. Through this role, I talk to people who have recently sustained an SCI from an ex-patient’s perspective. I aim to offer advice and signpost people to the help and support they might need.
further information
Would you like to volunteer for SIA? Email Jen Sims today at j.sims@spinal.co.uk for more information.
HEALTH | SCI RESEARCH
www.spinal.co.uk
A GRIPPING TALE OF STRENGTH More hand strength and dexterity is a dream shared by most people who live with tetraplegia. Over the years, many research efforts have arrived at solutions – but all have either involved invasive techniques with long wait times for results, or cumbersome devices such as exoskeleton gloves. Recently, researchers at the University of California unveiled a breakthrough approach. SPINAL CORD INJURY BRITISH COLUMBIA
www.sci-bc.ca
The jury has been in for some time. In numerous surveys and consultations over the past couple of decades, people with tetraplegia have made it clear: priority one is regaining the ability to use their hands. Nothing, they’ve collectively said, would restore greater independence. Many researchers have heard these pleas, and a number of solutions have been developed. But few have enjoyed widespread acceptance. Surgical techniques to transfer tendon and nerve function have been successful, but the cost and invasive nature, along with the length of time required for healing and results to appear, have tempered enthusiasm for these procedures. Meanwhile, many devices have been developed to allow people with tetraplegia to exercise hand function, but these offer only modest gains. In April, researchers at the University of California (UCLA) unveiled a possible game-changer – a revolutionary new, non-invasive therapy that appears to restore hand function for people with tetraplegia. They described the therapy and how they tested it in the April issue of the journal Neurotrauma. While more research is clearly needed, the experimental therapy must be considered a breakthrough – it appears to be inexpensive, easily administered over a short period of time (perhaps even at home) without surgery and, above all, overwhelmingly successful – even for people who were injured years ago. The UCLA lab behind the therapy is that of Dr. Reggie Edgerton, a leading expert in neuromodulation – interventions that involve the activation of the spinal networks after SCI using
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electrical stimulation applied epidurally (surgically implanted electrodes under the skin) or transcutaneously (electrodes placed on the surface of the skin). Parag Gad, a research assistant in Edgerton’s lab, is the lead author of this study: “One of our earlier studies showed that the cervical spinal cord could be neuromodulated using epidural (invasive) spinal stimulation,” says Gad. “Based on these ideas, our team wanted to test the efficacy of using the non-invasive spinal stimulation to enable hand function.” Gad explains that the therapy has two components. The first is transcutaneous enabling motor control, or tEmc, which involves the use of a small, portable pulse generator connected to electrodes. Once the electrodes are placed on the skin above the spinal cord at C3/C4 and C6/C7, electrical pulses are delivered at varying frequencies and intensities. This stimulates and awakens the dormant circuitry of the spinal cord that’s responsible for delivering instructions from the brain to the hands. The second component is manual rehabilitation exercise during the delivery of the stimulation – in simple terms, repetitive squeezing of an exercise device. “The spinal stimulation works on two principles,” says Gad. “First, it increases the level of baseline excitation in the neural networks that control upper extremity (arm and hand) function. Second, it acts as a ‘hearing aid’ to amplify descending commands that the brain sends down via the spinal cord to the various muscles of the upper extremity.”
In other words, subjecting the nerve pathways to a series of electrical stimuli ‘awakens’ them, so that the brain’s instructions to the hand are able to get through much more easily. In turn, repetitively exercising the target muscles during stimulation leads to gains that persist months (and perhaps even permanently) after the therapy sessions have ended. The researchers began by recruiting eight participants with tetraplegia, of whom six would ultimately finish the training sessions. Their time since injury ranged from one to 21 years. Prior to the study, none of the participants could turn a doorknob with one hand or twist a cap off a plastic water bottle. All had great difficulty operating a mobile phone. And three of the participants had complete injuries and couldn’t move their fingers at all. Each participant took part in eight 90-minute training sessions – two per week over four weeks. During these sessions, participants were provided with electrical stimulation while simultaneously squeezing a small gripping device 18 times with each hand, with each squeeze lasting three seconds. The
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gripping device measured the amount of force they were able to generate. The results were quite remarkable: “Within two or three sessions, everyone started showing significant improvements, and kept improving from there,” says Gad. After four weeks of training, participants’ handgrip force increased on average by 325% in the presence of stimulation and 225% without stimulation. These improvements were witnessed in both left and right hands, regardless of which hand was dominant. “About midway through the sessions, I could open my bedroom door with my left hand for the first time since my injury, and could open new water bottles, when previously someone else had to do this for me,” says Cecilia Villarruel, a participant from California who was injured in a car accident 13 years ago. Surprisingly, some participants also experienced other benefits beyond improved grip strength and finger dexterity, including improvements in blood pressure, bladder function, cardiovascular function, and trunk control. The results were so positive that even the researchers admit to being surprised. “After just eight sessions, they could do things they haven’t been able to do for years,” says Edgerton, adding that this is the largest reported recovery of the use of hands that has been reported in patients with such high-level SCI. “We were initially not expecting the results to be as effective as they were, especially in the autonomic functions and trunk function,” says Gad. “The entire team was super excited to see and hear what the patients reported back to us.” As for permanence of the benefits, results are again promising, as two of the six returned to Edgerton’s laboratory 60 days after the training ended and clearly still had their grip strength intact – they could still turn a doorknob or use a fork with one hand, and twist off a bottle cap. But Gad concedes that the permanence won’t be known for some time. “We’re still exploring this aspect,” he says, adding that there were no adverse events or side effects experienced by any of the participants. While exciting, the study can’t really be considered conclusive because of the small size and the lack of a control group to compare with those receiving the treatment. Gad says the immediate
Dr Reggie Edgerton
priority is confirming the benefits with more people, via controlled, blinded studies (studies in which participants are randomly selected to either receive the therapy, or a sham therapy, with no one, including the researchers knowing who is in which group). “Studies are being planned by us and some of our collaborators around the world to test this in a larger cohort of subjects over a longer period of time,” he says. He wouldn’t put a timetable on this, but confirms that, because the technology is relatively inexpensive and the treatment so easily carried out, a larger trial could happen as early as next year. Meanwhile, the prototype stimulation device used for the treatment, which was developed in Edgerton’s lab specifically for this purpose, has already been spun off into NeuroRecovery Technologies, a medical technology company Edgerton co-founded. Currently, the company is seeking FDA approval for the device so rehabilitation clinics and others can use it. Approval could happen quickly if the company can make its case that the
Parag Gad
stimulator is a Class II non-significant risk device. Many readers will end up here wondering, “OK, great, but when can I get my four weeks of training, and can I get it locally, ideally in my own home?” “Best case scenario, it could take two to four years,” says Gad. “We hope that this device can be used by as many people as possible, at home, in the doctor’s office, in the rehab centres. We see this as an effective and inexpensive solution that could help thousands of patients in the near future.” The research was funded by the Christopher and Dana Reeve Foundation, the National Institutes of Health’s National Institute of Biomedical Imaging and Bioengineering, the Dana and Albert R. Broccoli Foundation, and the Walkabout Foundation.
further information
This article was first published by Spinal Cord Injury British Columbia in the charity’s online publication, The Spin - www.sci-bc.ca
This research therapy aims to stimulate the dormant circuitry of the spinal cord that's responsible for delivering instructions from the brain to the hand
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HEALTH | AQUATIC THERAPY
www.spinal.co.uk
AQUATIC THERAPY AND PAIN RELIEF Many SCI people live with chronic pain and it can have a debilitating impact on all aspects of life. While medication is often used to manage pain levels, aquatic therapy provides an alternative approach to alleviate pain and some of its causes.
The benefits of warm water therapy can be traced back thousands of years. In Ancient Egypt, thermal baths and hot air caverns were used to treat a wide range of ailments. Moving forward to Ancient Greece, the father of medicine, Hippocrates, famously said: “Give me the power to produce fever, and I will cure all disease.”
Modern-day approach
The Aquatic Therapy Association of Chartered Physiotherapists (ATACP) defines aquatic physiotherapy as: “A therapy programme utilising the properties of water, designed by a suitably qualified physiotherapist specifically for an individual to improve function, carried out by appropriately trained personnel, ideally in a purpose built, and suitably heated hydrotherapy pool” (ATACP, 2008). Aquatic therapy is a physiotherapy technique often used to help people manage chronic pain and its symptoms. It does so in several ways:
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Warmth. Hydrotherapy pools are usually heated to around 34 degrees. The heat stimulates thermoreceptor nerves in the body, which block pain signals to the brain. In addition to pain relief, the warmth stimulates circulation, bringing oxygen and nutrients to cells. It relaxes muscles and soft tissue, increasing range of movement when stretched and decreasing tone and spasms.
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Pressure relieving. Humans are naturally buoyant in water and as we float the weight and pressure on our joints is relieved. For people who use a wheelchair, floating in a pool also provides pressure relief for the skin and may give a sense of freedom.
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Muscle strength. Some pains are caused by musculoskeletal conditions. Improving muscle strength helps to stabilise joints, preventing weakness and pain. The properties of the water can be used to assist or resist movement, therefore contributing to improved muscle strength. As you are exercising in a different position, free from contact with wheelchairs or beds, you can exercise muscles in a different range more easily to land-based strengthening exercises.
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Reducing swelling. The pressure of the water can help reduce any oedema in limbs.
An assessment with a physiotherapist will determine if a course of aquatic therapy will benefit you. It is sometimes available on the NHS and depending on the structure in your area, you could ask your GP for a referral or you might be able to self-refer to your local NHS physiotherapy department. Alternatively, you could pay for private aquatic therapy sessions. Should you choose to do so, ensure that the physiotherapist is registered with the Health Professionals Council. Ideally, they would be a member of the Chartered Society of Physiotherapy (CSP) and members of the ATACP. You may find that you can achieve the benefits of some pain relief by just being in a warm water environment and if so you can consider using a bath or jacuzzi if accessible.
Benefits of swimming
If you do not require aquatic therapy but enjoy being in the water, swimming also provides a range of benefits and is a great way to unwind.
If you’d like to take swimming more seriously, why not get involved with your local Disability Swimming Hub Club? The clubs work in partnership with Swim England to offer training and advice to disabled swimmers. They offer swimming assessments at local pools to identify development opportunities for potential aquatic athletes. Whether you would like to take up swimming as a hobby or as a competitive sport, it offers a range of wellbeing benefits: • It’s a good form of cardiovascular exercise • It burns calories and helps with weight loss • It promotes flexibility of limbs/joints • The water supports the weight of your body, giving you a sense of freedom that other sports can’t offer • Exercise releases endorphins – receptors in the brain that relieve stress and pain • It relieves anxiety and depression • It’s sociable and opens up the opportunity to meet new people.
further information
For more information about Disability Swimming Hub Clubs and to find your nearest accessible swimming pool, visit www.swimming.org
FORWARD FOCUS | UROLOGY HEALTH
www.spinal.co.uk
FORWARD FOCUS
BE CLEAR ON
DR KARIN PURSHOUSE
Specialist Registrar in Medical Oncology
MR JOHN REYNARD
Public Health England (PHE), in partnership with the Department of Health, NHS England and Cancer Research UK, launched the ‘Be Clear on Cancer’ campaign in 2011 to improve public awareness of cancer and the importance of early diagnosis. Each individual campaign focuses on a particular type of cancer and, between 19 July and 23 September this year, the ‘blood in pee’ campaign sought to raise awareness of bladder and kidney cancers.
OXFORD UNIVERSITY HOSPITALS NHS FOUNDATION TRUST
The Urology Foundation also strives to increase awareness and understanding of urological diseases, and each year Urology Awareness Month takes place in September. Given the importance of bladder health for people living with SCI, we asked the specialist UroOncology Team at the Oxford University Hospitals NHS Foundation Trust to provide an overview of the symptoms and treatments for cancers of the urinary system.
PROF ANDREW PROTHEROE
Consultant Medical Oncologist
Consultant Urological Surgeon
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CANCER
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Cancer affects 360,000 people per year in the UK, and one in two people will get cancer during the course of their lifetime. Urological cancers, which are cancers of the prostate, kidney, bladder or testicles, account for around 20% of these. Our team in Oxford looks after patients with urological cancers, working with surgeons, clinical oncologists, medical oncologists, pathologists, radiologists and specialist nurses, amongst others. People living with SCI face different issues when it comes to urological cancers, and indeed cancer as a whole. It is clear from large studies that while the life expectancy of those with an SCI has improved significantly over the last 70 years, fewer will reach old age. This is important when considering that ageing is a key risk factor for developing cancer. The medical complications of an SCI might explain why some cancers are seen more, and others less, in this group of people. Managing bladder and urinary symptoms can be one of the most difficult aspects of life after an SCI, and this can lead to uncertainty about when to worry about symptoms or screening for cancer. In this article, we aim to outline how urological cancers might affect people with an SCI and what symptoms to look out for.
Prostate Cancer
Studies have shown a lower risk of prostate cancer in men living with an SCI than those without. However, it is understandable that men are concerned about prostate cancer as it is the most common cancer affecting men in the UK, with nearly 50,000 new diagnoses each year. High-profile men with a recent diagnosis, such as journalist and Classic
FM presenter Bill Turnbull and presenter Stephen Fry, have renewed the spotlight on the disease. There are a lot more treatment options for prostate cancer than there used to be, and these include surgery, radiotherapy, hormones and chemotherapy depending on the stage of the cancer. The prostate is a gland found only in men that sits below the bladder. The urethra, the tube that lets urine and semen out of the body, passes through the prostate. As a result, many of the symptoms of prostate cancer manifest as urinary symptoms. In men without an SCI, these might include changes to urine flow, such as difficulty starting or stopping when urinating, dribbling or a poor flow. When cancer invades local structures, men may notice symptoms that affect their sexual function, such as problems with erections or blood in the semen, or blood in the urine. When cancer spreads beyond the prostate, this is called metastatic prostate cancer. Prostate
Making the right lifestyle choices can reduce the risk of cancer
cancer most commonly spreads to the bones, but other areas include the lungs or the liver. Symptoms include general symptoms like fatigue or weight loss, or pain in the back or pelvis. Clearly some of these symptoms may be different for men with an SCI, especially if they are catheterised or pass urine differently since their SCI. This can raise worry about missing a diagnosis, or whether it is useful to screen for prostate cancer. If you are worried about prostate cancer, a blood test for Prostate Specific Antigen (PSA) can be done and, if this is raised, investigations include biopsies of the prostate and an MRI scan. The PSA test is sometimes seen as controversial both by doing it and not doing it. The difficulty with interpreting a PSA is that it can be raised for reasons other than cancer, such as infection or recent manipulation including catheters. As a result men could have invasive biopsies and investigations, which may have complications, needlessly. In addition, often men will have prostate cancer diagnosed but this may not be life limiting. This is true for all men, and especially so for men living with an SCI. Indeed, even men who are diagnosed with metastatic prostate cancer have a life expectancy that can be estimated in years. As such, we often talk to men about the likelihood of dying with, rather than from, prostate cancer. Aggressive diagnosis and treatment of a cancer that is unlikely to limit life expectancy may have a negative impact on quality of life, including the stress of hospital trips, blood tests and investigations. Given that prostate cancer is less common in men with an SCI, and other
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FORWARD FOCUS | UROLOGY HEALTH
www.spinal.co.uk
Make the right lifestyle choices
A healthy and balanced diet is important for our health and wellbeing
medical issues may be a higher priority in terms of health and wellbeing, it is important to consider whether checking your PSA and other investigations for prostate cancer is right for the individual.
Bladder cancer
Bladder cancer can also present with blood in the urine. In the UK there are approximately 10,000 new cases diagnosed each year. Bladder cancer can be surgically removed if it is caught early, although chemotherapy, immunotherapy and/or radiotherapy may also be involved. If it progresses, bladder cancer often spreads first to the local lymphatic system, but can spread to other organs such as the lungs and liver. With metastatic disease, chemotherapy and immunotherapy are the main options. Bladder cancer represents a slightly different entity for people with an SCI. In the population as a whole, the most common type of bladder cancer is transitional cell carcinoma (TCC). In people with an SCI, squamous cell carcinoma (SCC) is more common and this tends to be more aggressive. In addition, bladder cancer tends to affect people at a younger age in those with an SCI. The challenge therefore is early diagnosis, as it is not uncommon for SCC bladder cancers to spread in a way that is initially undetectable on scans. When there is blood in the urine, it is important to get this checked out.
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Although other things, such as infections, can cause this symptom, there should be a low threshold for having a bladder camera test, called a cystoscopy, the first time blood is seen in the urine. Some have suggested people with an SCI could have screening cystoscopies for bladder cancer, but the evidence to date suggests it does not generate significant benefit and is extremely expensive. Most experts agree that a better approach is vigilance and a low threshold for investigation.
Other urological cancers
Kidney and testicular cancers can also affect people with an SCI but there is no evidence that they are any more or less common than those without.
Cancer does not discriminate, so whether you have an SCI or not, it can affect anyone at any age. While some cancers are hereditary, caused by inherited faulty genes, the environment and our lifestyle choices also influence the risk of developing cancer. According to Cancer Research UK, it’s estimated that four in ten cancer cases could be prevented. Here are just some of the lifestyle changes that you could make to reduce the risk: ✔ Keep active ✔ Maintain a healthy weight ✔ Eat a healthy and balanced diet ✔ Reduce your alcohol intake ✔ Not smoke ✔ Take precautions in the sun to prevent UV damage.
Kidney cancer
Kidney cancer is the second most common urological cancer and approximately 12,500 new cases are diagnosed in the UK each year. Symptoms might include blood in the urine, a swelling or lump in the kidney area or general symptoms like fatigue, weight loss or back pain. The kidneys sit in the back part of the abdomen, which is why they can cause back pain. These symptoms are all quite non-specific and, if they are accompanied by sweats or fevers, may represent an infection, and with pain can represent kidney stones. When kidney cancer spreads, it can
involve a variety of organs such as the lungs and bones. All of these symptoms are broadly similar for people with an SCI. If caught early, kidney cancer can often be cured by surgery alone. When kidney cancer has spread to other parts of the body, there are now many treatment options with specialist targeted drugs,
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called tyrosine kinase inhibitors, and immunotherapy. Some patients will have operations to remove areas where the cancer has spread.
Testicular cancer
Testicular cancer affects 2,500 men per year in the UK, so it is actually quite a rare cancer. Testicular cancer most commonly manifests as a lump in the testicle, but men may also notice heaviness or, less commonly, pain in the testicle. Pain is more likely to signify another diagnosis, such as infection. Diagnosis for testicular cancer involves an ultrasound, which is painless, and blood tests. A CT scan may follow. Treatment of testicular cancer usually involves removal of the affected testicle, and men can be offered a prosthesis (false testis) if they prefer. Sometimes men will need further treatment with surgery, radiotherapy or chemotherapy if the cancer has spread. However, testicular cancer is one of the most curable cancers. Even cancers that are metastatic at diagnosis, or cancers that come back, have a very high chance of being cured.
Other spinal problems caused by urological cancers
As you can tell, a lot of urological cancers mainly show themselves through urinary symptoms at the beginning. Kidney cancers can give back pain because of their location at the back of the abdomen, and can be the first sign of cancer. Most people who have persistent back pain from urological cancer do so because it has spread to the bones of the back. This is can occur in men with prostate cancer, but can also happen with other urological cancers. This might manifest as pain that is worse at night, present even at rest or is progressively worsening despite simple pain relief. When cancer has spread to the spine, apart from being painful, there is a risk of the cancer growing onto the nerves that leave the spine, or even the spinal cord itself. When this happens, this needs urgent treatment with surgery or radiotherapy to preserve the function of the spinal cord and prevent an SCI with surgery or radiotherapy. We have a specialist service to see and treat people where there is concern about spinal cord compression as an emergency.
further information
What to do if you develop cancer Hopefully this article has explained how urological cancers might present and what to expect in terms of tests and treatments. It is important to remember that cancer is one of the main areas where improvements in survival are most notable for people with an SCI. We have highlighted some of the special considerations for people with an SCI to help make decisions about when to investigate further and what the process might involve. If you are diagnosed with cancer, teams like ours are ready to support you through your diagnosis and treatment. We have a fantastic specialist nursing team, and also work closely with other departments and support teams depending on what each individual needs. In Oxfordshire and the Thames Valley we also have access to support groups for individuals with prostate, kidney and bladder cancer. To increase awareness of urological cancers in Oxfordshire and the Thames Valley we have a local charity UCARE (www.ucare-oxford.org.uk) with an outreach community nurse.
Summary
For more information about how to prevent cancer and for healthy lifestyle tips and advice, visit www.cancerresearchuk.org and www.macmillan.org.uk.
In the fight against disease, it’s important to be mindful and aware of your body and overall health. If you notice any changes or have any concerns, always speak to your GP. It is also important to attend your annual check-up at your nearest SCI Centre. If you are not registered as an outpatient at an SCI Centre, ask your GP to refer you.
REFERENCES: CRUK About Cancer, January 2017, reviewed 8 June 2018 http://www.cancerresearchuk. org/about-cancer/ Savic G, DeVivo MJ, Frankel HL, Jamous MA, Soni BM, Charlifue S. Long-term survival after traumatic spinal cord injury: a 70-year British study. Spinal Cord. 2017 Jul;55(7) Kao CH, Sun LM, Chen YS, Lin CL, Liang JA, Kao CH, Weng MW. Risk of Nongenitourinary Cancers in Patients With Spinal Cord Injury: A Populationbased Cohort Study. Medicine (Baltimore). 2016 Jan;95(2) Lee WY, Sun LM, Lin CL, Liang JA, Chang YJ, Sung FC, Kao CH. Risk of prostate and bladder cancers in patients with spinal cord injury: a populationbased cohort study. Urol Oncol. 2014 Jan;32(1) Kalisvaart JF, Katsumi HK, Ronningen LD, Hovey RM. Bladder cancer in spinal cord injury patients. Spinal Cord. 2010 Mar;48(3):257-61. doi: 10.1038/sc.2009.118. Epub 2009 Sep 15. Elliott SP Screening for bladder cancer in individuals with spinal cord injury. J Urol. 2015 Jun;193(6):1880-1. doi: 10.1016/j.juro.2015.03.069. Epub 2015 Mar 17.
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december 2018 | Issue 148
GET USEFUL DAY-TO-DAYTIPS AND ADVICE FROM SCI PEOPLE.
daily living SPORT | REMAP | SUPPORT FOR UNPAID CARERS | FAMILY LIFE
A WORLD FIRST Turn to page 42 to find out how the GB men’s wheelchair basketball team made history in 2018.
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daily living | TRAVEL
www.spinal.co.uk
A DAY TRIP TO LUXEMBOURG He only had 24 hours to explore Luxembourg City, but Derry Felton made sure that he saw the best that the city has to offer. DERRY FELTON SIA member
Not long after my trip to Paris, my boss and I started talking about holidays that we had been on. She said that she and her partner had set themselves a challenge a few years ago to visit a city outside of the UK for a day and see if they could do it for under £100. They were able to go to Copenhagen and were exhausted by the end of the day, but they really enjoyed themselves. As a massive fan of travelling, I thought to myself: “I can do that!” So, I did. On 17 October, two carers and I went to Luxembourg City, the capital of Luxembourg. Since the age of two, I have had an SCI (C2/C3) caused by a virus known as Transverse Myelitis. It causes inflammation of the spinal cord. Despite the fact that I have no use of any of my limbs and need to use a ventilator for the
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majority of the day, I have not let this hold me back and I have been to numerous places in Europe. I have been to France (three times), Sweden (twice, both times sit skiing), Holland, Spain and Belgium. In November 2018, I went to Vienna in Austria and Bratislava in Slovakia, as a combined trip. In January 2019, I am going to Tallinn in Estonia and Helsinki in Finland, also as a combined trip. During the summer of 2018, I did a bit of thinking of where I would like to visit for a day. My criteria was to spend less than £150 and go somewhere I could see all or the majority of its main landmarks. After careful deliberation I decided the best place to go was Luxembourg. I discussed the idea with my carers and they agreed it was a good idea and something they were up for with helping with. I looked online and found a good flight for Luxembourg, which was cheap and departing at a good time. The best idea with any city break is
to get an early flight out and a late flight back to utilise your time effectively. Time is even more important for this trip as there would have been nothing worse than flying somewhere only to have three hours to look around. So, I booked a flight out of Heathrow at 8.30am and a flight out of Luxembourg at 21:30pm. This turned out to be plenty of time to visit the whole city. On the day of our trip, I was washed and dressed by 2am! I was in my chair by 3:30am and we left Northampton via taxi at 4am. We arrived at Heathrow Airport at about 5:15am and checked in. We had breakfast and then waited for our flight. This was my first time flying with British Airways and I cannot praise the airline staff enough, they were excellent. They were aware that I was a wheelchair user when I booked and were fully prepared for me when I pulled up to the aircraft. My chair was taken to the hold and
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packed in its own box so it couldn’t be damaged; damage to my chair was a problem on previous flights but that is a story for another time! We landed at Luxembourg Airport at 10:50am and my chair was ready and waiting for me ten minutes later. We quickly left the airport, as I was conscious of having time to see everything I wanted to, and got onto the number 16 bus. Buses either drop down to curb level or the driver will pull out a ramp. On this occasion, the bus lowered. It is important to take bus 16 if you wish to visit Luxembourg City, as it’s the only bus that takes passengers from the airport to the city. After a 20-minute bus ride, we were in the heart of the city and ready to explore! Luxembourg City is extremely compact and all the major sights are in walking distance of each other. It was a beautiful day as well – 23 degrees! First on list to was the Grand Ducal Palace of Luxembourg, which is the official residence of the Grand Duke of Luxembourg and where he performs most of his duties as head of state. It is only open in the summer to look around but it is nice to look at the Renaissance architecture. From here, we went to the Notre-Dame Cathedral and Paroisse du Sacré-Coeur. Both are immaculate churches, which are definitely worth a visit. From Notre Dame Cathedral, we walked around the market square and looked at the Town Hall. After this, we walked around the outer edge of the city and looked at the beautiful views. Built on a large mountain, Luxembourg City was originally a fortress and the history of the city dates back to 963. As
The Grand Ducal Palace of Luxembourg
the years have passed, not much of the original fortress remains. You can see much of the city, which spreads across several layers, by using either the lift or walking around on foot – as long as you can take a few cobbles! One of the highlights of the city is Le Chemin de la Corniche, known as ‘Europe’s most beautiful balcony’. It offers an amazing view of the whole city and it’s a must-see. It was soon time to head back to the airport so we walked through the modern city centre, which has lots of restaurants, bars and a bus stop. Massive skyscrapers tower over this part of Luxembourg City. We arrived at the airport with plenty of time to spare and had enough time to relax a little before flying again. It was an exhausting experience (especially as the M25 was closed on the way back) but definitely worth it. I look forward to going again and exploring some of the churches and other areas of the city.
Verdict
An extremely well looked-after city with access for all!
A FREE WELCOMEVISITOR SERVICE FROM NYC VOLUNTEERS Dustine West’s article New York on Wheels in the August issue of FORWARD reminded me of a recent family holiday and a very helpful charity called Big Apple Greeter, which arranges for visitors to be introduced to this amazing city by an enthusiastic New Yorker. Julie, our volunteer greeter, has a high-level SCI and her advice and introduction to life in New York City was invaluable. Julie met us at our hotel in Manhattan on the first day of our trip, showed us some of the tricks for getting around New York by bus and subway, and then took us on a personal tour of Brooklyn. We were shown leafy suburban streets, archetypal New York delis and coffee shops, and some fantastic viewpoints looking across the Hudson River. I recommend Big Apple Greeter to anyone heading to New York, as a little local knowledge goes a long way.
For more information visit bigapplegreeter.org
GRAHAM ANDERSON
Peer Support Officer, South West E: g.anderson@spinal.co.uk
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daily living | sport
www.spinal.co.uk
PUSHING BEYOND BOUNDARIES Sometimes we think we know the limits of our capabilities, but as Stefanie Probert found out, you can achieve so much more with the right encouragement. STEFANIE PROBERT SIA member
I sustained my first SCI in 2007 as a result of Cauda Equina. It happened suddenly while on safari in South Africa. I made it home but was taken into hospital the day after and had surgery a couple of days later. I learnt to walk again after being told that I wouldn’t be able to. The operation, I was told, was to relieve the pain, but they were unsure how much damage my spinal cord had suffered. I went back to work as a project manager after six months and although I had some lack of feeling in my feet, I had been lucky. In early 2014, while going through a divorce, I reacquainted with an old friend, Andrew Schofield, and we decided to start a relationship. Andrew had sustained a high-level complete SCI in a bike accident 16 years previously. He was an inspiration, having climbed most of the Lake District peaks in a wheelchair he
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made himself, attending bike rallies and living independently. My back was starting to deteriorate at the time and I had started to walk with a stick. In April 2014, my back went again when walking up a step. I saw my consultant three days later when I was rushed into surgery again. It was Cauda Equina for the second time. After the operation, I was left with long-term issues affecting my bladder and lack of feeling in my legs and feet. Again, the recovery was long and painful, but I could walk with the aid of a stick, albeit dreadfully slowly. Two years later I fell and when I went to hospital I was told I had broken my neck at C3. I was placed in a cast and sent home. The week after, Andrew picked me up from my house as my vertebrae had collapsed further and the doctors put me on total rest. Andrew cared for me for nearly four months, even though he had his own difficulties. After being given the all clear, we sat and watched the Rio Paralympics.
Andrew, left, encouraged Stefanie to improve her fitness
Andrew was really worried about my walking as it was deteriorating still. He said he didn’t want us both to be in wheelchairs. He asked me to start going to the gym, but I said I would only go if I had a purpose. I couldn’t think of anything worse than going to the gym with no goals. We watched the TV and worked out which sports I might be able to do.
december 2018 | Issue 148
After looking online, I contacted our local archery club, which put us in touch with Northern Archery and we signed up for a beginner’s course. My two children and I took part and I was able to sit while shooting from a chair. We loved it. I enjoyed it so much, my children and I signed up to the local club, Morecambe Bay Archers. For the first three or four months, I shot sat down. I was advised to stand up by Archery GB as I didn’t classify for sitting. So, with the help of the club, I started to shoot standing up. The club and its members were great; one member even made a holder for my walking stick, so I didn’t have to bend down to pick it up. As a para archer, you shoot alongside non-disabled archers. There are a few para competitions, but all competitions accommodate for para athletes, whether you are in a wheelchair or struggle to walk – it’s an incredibly inclusive sport. Archery has changed my life. Mentally, it has given me a focus. Once you start shooting you can only think about that shot. I had lots of self-esteem issues and depression, but archery gave me a time in the week when I could meet ordinary people who just treat me as an archer and not someone with a disability. Archery has given me a purpose to live, to get out of the house and meet people, plus its great fun. Physically, my back strength has really improved from all the movements involved and I am a lot more flexible. This year was my first outdoor season competing in archery. The highlight of the outdoor season was achieving the North Countries Archery Meeting Disabled Champion Award, winning a medal and a shield. I hope to achieve the Bowman classification in the next two years, which takes you into the top 15% of archers in the country. My other goal is to shoot for the Cumbria county team and take part in the disabled championships at Archery GB’s headquarters.
organisation that specialises in para powerlifting. From there I found a trainer, Dave at Sporttesse PT in Chorley. He asked me to go to his physio so she could decide what my back could and couldn’t do. I initially started on a programme to work on my full body. After about two months I could do my first bench press. It was difficult, but my partner Andrew kept reminding me of the original reason for going to the gym – to get stronger so I could do more for myself. I set myself a goal of competing at the British Championships. I went to the gym as often as my body allowed and continued with the programme. At the British Championships in 2017, I managed to get a bronze medal and a new personal best. I continued with training, working towards the English Championships in January 2018. I didn’t expect to win a medal and just went to achieve a personal best. I managed to lift 64kg and secured a bronze. Andrew continued to encourage me to get of bed and get to the gym, even on the darkest, coldest, wettest days, telling me I would feel better for going and reminding me of the difference it was making to my life. I spoke to the head coach of the para team and was invited to go to the performance centre at Loughborough University. I remember sitting on my bench surrounded by weightlifters
and para powerlifters all going to the Commonwealth Games. I felt like a fish out of water. I really enjoyed the session and came home motivated. Over the coming months I went from bench pressing 64kg to 77.5kg. My health has benefited so much from the gym work. I know my legs are never going to be great, but just having more upper body strength helped me not only help myself, but I was able to help Andrew with tasks around the house and with his care. My mental health benefited too as I’m driven to get out of bed as I have a purpose in life. My future long-term goals are to lift 100kg and compete for my country. In July this year, Andrew passed away suddenly aged 54. He encouraged me and others to live life to the full and follow my dreams. He always said: “You’ll never know until you try,” and I live by that. My children have been inspired by him and don’t see disability as a barrier to living a fulfilled life. He was an inspiration and I will continue to progress and continue in the sports I’ve found and love in his memory.
further information
To find out more about para powerlifting contact British Weightlifting at www.britishweightlifting.org To find out more about Para Archery contact Archery GB at www.archerygb.org
DISCOVERING A NEW TALENT
When I started looking at archery, I decided to go to the gym. With my spinal issues, I was unsure if I would be even allowed in. I joined a local gym and explained what I wanted to do. They were happy to take me on and I was encouraged to join a class. I then contacted British Weightlifting, the
Para powerlifting has helped Stefanie to improve her upper body strength
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daily living | WHEELCHAIR BASKETBALL
www.spinal.co.uk
A WORLD FIRST FOR GB MEN’S WHEELCHAIR BASKETBALL TEAM In August this year, Abdi Jama and the GB men’s team made history when they won the wheelchair basketball World Championships for the first time. ABDI JAMA Paralympian @abdijama
I think it’s fair to say 2018 has been one of the most memorable years of my life to date – for all the right reasons! I’ll never forget the year of 1997, when I sustained a T7/8 SCI at the age of 14, but the positive events in recent years are what define me and have made me the person I am today. I last wrote an article for FORWARD in February 2017, when I was playing wheelchair basketball for a Spanish team. Not long after I returned to England, I joined the centralised programme at the Sheffield Arena and joined the Sheffield Steelers Wheelchair Basketball Club.
SETTING MY SIGHTS ON A GOLD MEDAL
I took part in the European Championships in 2017 and as soon as the tournament was over, the GB team players were focused and ready for the 2018 World Championships – we wanted to make a statement on the world stage. I was lucky enough to compete in the previous two World Championships; in 2010 the GB men’s team finished fifth and in 2014 we came seventh. We didn’t get to where we wanted to, but we knew we had the talent and that the team was capable of achieving more. It was a case of bringing all our efforts together and proving to everyone that we could be the best in the world. Preparation for the 2018 World Championships was intense. The team attended training camps twice a month
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and played in tournaments up and down the country. I was also playing for the Sheffield Steelers, which involved playing in many league games as well. It was full on. Before I knew it, it was August and we were off to Hamburg in Germany to compete in the World Championships! The tournament featured 12 women’s teams and 16 men’s teams, representing 19 nations in total.
Competing in the World Championships is probably the top level you can reach as an athlete in the sport. You have the Paralympics, but it’s a completely different event. At a tournament level, this is the one that every wheelchair basketball player wants to compete in. We were mostly unbeaten in the group games of the tournament and won against big teams – Turkey, Germany, Canada, Poland and Holland. We were comfortable with our performances. The only game we lost was to the US, but it was close and we didn’t lose by much. We made a few mistakes here and there and it was a setback losing to them. However, we were able to fix those issues and we had a game plan that worked really well. We knew we had a chance to win. We believed in ourselves and we knew that
december 2018 | Issue 148
League in the playoffs and, for the first time in the club’s 31-year history, won the EuroLeague 2 title. It’s been a fantastic year for me and some of the other players. I’ve now moved abroad and next year I’ll be playing for a team called Mideba Extremadura based in Badajoz, Spain. In terms of the GB men’s team, I couldn’t be prouder of what we achieved this year. There was such team spirit and we felt like brothers. It was a fantastic achievement and now we want more. We’re looking ahead to the Tokyo 2020 Paralympics. Next year we need to qualify for the European Championships and our aim is to make the top four. That said, we’re going there to win. If we can win that and then go on to win Gold in Tokyo, we could achieve a treble.
SCI PLAYERS
anything was possible. We focused on reaching the quarterfinals and believed that if we won that game we could win the tournament. We knew that with the current team as it stood, we might not get another chance.
MAKING HISTORY
absolutely incredible. I can’t begin to describe how we felt. All our hard work and non-stop efforts to get to this point came to fruition. The way in which we beat the US was phenomenal. I think it was the first time a team had beaten them by so many points – 79-62. The event organisers did a great job of accommodating everyone and it was superbly executed. While in Hamburg, we had a few days off and were able to spend some time in the beautiful city. I really liked it. It’s an amazing place to be and it’s a really accessible city.
For me, I’d love to see more SCI people playing wheelchair basketball. I’m still the only player in the GB team who has an SCI. I think there has been a real improvement in SCI people taking part in other sports, but for some reason you do not see as many SCI people reaching and competing at the higher level of wheelchair basketball. I’d like to see more awareness of what wheelchair basketball can do for you. Aside from the obvious of being able to play at an elite level, physically it improves your fitness and strengthens your body, and mentally it helps you too. It gives you a sense of freedom. I’m excited for the future of the sport and for what lies ahead of me in the coming years. The sky is the limit!
To play in the finals of the World Championships against the US was an experience that will stay with all the players for a long time. We had never reached this stage before but we were confident. After 40 minutes of sheer determination and commitment, the GB men’s team won its first ever global gold medal and was crowned winner of It has been a phenomenal year for the 2018 World Championships! It was Sheffield Steelers. We won the British 11:21 Origin Respite (Thumbs up) Final Nov 2016 193 x 63 girls_Origin Choice (Forward) 24/11/2016
WHAT’S NEXT?
get involved
If you’d like to find a local wheelchair basketball club or learn more about the sport, visit www.gbwba.org.uk Page 1
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daily living | REMAP
www.spinal.co.uk
REMAP YOUR LIFE Find out which innovative designs were awarded at this year’s Remap Awards. DAVID MARTIN
www.remap.org.uk
A range of life-changing projects were celebrated at the Remap Awards 2018. Remap is a charity that helps disabled people achieve independence and a better quality of life by designing and making equipment for their individual needs. It has a network of talented engineers and technicians who love to invent and make bespoke equipment solutions. Last year, the charity helped over 3,500 people in this way and gave the equipment free of charge in every case. The Remap Awards are given to some of the outstanding projects at an annual event in London.
The helping hand Bob Crump is paraplegic following a car accident, but this hasn’t put him off his hobby of off-road driving. He has a hand-controlled Range Rover, but was experiencing difficulty getting from his wheelchair and into the car unassisted due to declining upper body strength.
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Remap volunteer David Tappin came up with a solution for him. This is a simple, lightweight frame that clips onto the vehicle’s door hinges to provide a strong but stable handle. After fitting it himself Bob can use both hands and arms to lift himself into the driving seat. Bob took the time to thank Remap afterwards: “The handle David Tappin made allowed me to not only continue my off-road driving but also enabled me to get out much more for general day-to-day activities, which I had started to avoid, therefore improving my quality of life. I can’t put into words how grateful I am to Remap and especially David who generously gave so much of his time and expertise.”
The Snowdon Push
Meanwhile, another wheelchair user set her sights on mountaineering! The Snowdon Push is a charity fundraising challenge in which teams of between 10 and 16 people aim to conquer Mount
Snowdon. One member of each team must be a wheelchair user, which means pushing, pulling, climbing and wheeling as a team to reach the summit and back down again, covering approximately eight miles of steep, mixedsurface terrain. This challenge fell to Fred Harrison who helped Rosie Tween and her supporters complete the challenge. He adapted her everyday wheelchair by adding a front wheel for steering and braking, along with fixings for pulling straps and a rear pushing and lifting frame. All this was done without cutting, drilling or welding to her wheelchair. Fred explains: “I stripped down an old BMX bike and fixed its front end to Rosie’s wheelchair. A lifting and pushing frame was connected to the rear of the wheelchair
further information
directly into its anti-tip sockets. The newly adapted chair was given the name Hillary.” Other projects to win Remap Awards this year included a vision system for a man who is registered blind, a bathroom standing platform for a girl with dwarfism, a rollator adaptation for an amputee, a special handrail fitted to the door of an ancient church and an ordinary chair was fitted with wheels so it could be used on a narrow boat.
Visit www.remap.org.uk or phone 01732 760 209 to find out more about these and other examples of Remap’s work, and to locate your nearest group. With over 70 groups across England and Wales there’s probably one near you and all their help is free.
SPINAL HOME CARE Your Life – Your Way Supporting Clients Nationwide Spinal Homecare Services are proud to be providing nationwide, high quality specialist support for adults with spinal cord injury and other physical disabilities since 2002. Our services are individualised, person centred, as we passionately believe that our clients have the right to live lives that are purposeful and which enables them to be independent and reach their full potential. Our services can be delivered on a permanent, short term or respite basis. All staff at our NCFE accredited training centre are appropriately trained in accordance with The receive regular ongoing support by an experienced management team. Care Quality Commission & ISO accredited.
For further information please call us on 01539 730777, email: enquiries@spinalhomecare.co.uk or visit www.spinalhomecare.co.uk
daily living | CARERS
www.spinal.co.uk
SUPPORT FOR UNPAID CARERS
What is a carer?
A carer is usually an unpaid partner, relative or friend of a disabled individual who helps with his or her activities of daily living. The carer, in the main, has taken on this role by choice. Increasingly, children are finding themselves struggling with schoolwork and having to support a parent who is living with a disability.
Are you an unpaid carer for a relative or friend with an SCI? Find out what support is available to help you with your physical and emotional wellbeing. We live in challenging times for people living with a disability and also JOY SINCLAIR for those who provide Ageing Well care for them on a daily Consultant basis, not least because of the current economic climate that has made it more difficult for care providers to manage their budgets. The call for a more ‘creative’ style of accounting has resulted in some care packages being underfunded, which for some disabled people has led to the number of hours of care
being reduced, while in other cases disabled people are faced with having to contribute more towards their care. As a result, SCI people are having to rely on partners and family members to fill the gaps in their paid care provision; this is not an entirely new phenomenon, as in the past, many people living with SCI in the community have relied on ‘informal’ care provided by families and friends. We must learn from the experience of that generation, from those providing the care and the effect that it has had on their physical and psychological wellbeing.
6.5 MILLION PEOPLE IN THE UK ARE CARERS, SUPPORTING A LOVED ONE (CARERS UK)
Carers UK Survey
Findings from the survey, State of Caring, revealed:
40%
of carers said they hadn’t had a day off for more than a year.
25%
The physical, mental health and social issues which may affect you The main physical effects of long-term caring are musculoskeletal, for example back pain and general aches and pains. Fatigue, if allowed to become chronic, can affect you both physically and mentally. Headaches, insomnia and loss of appetite may also affect you. You may feel anxious or irritable at times. If you suffer from depression, which can be intermittent or chronic, it can have a knock-on effect both physically and mentally. It is vital to keep your sense of identity: don’t refer to yourself as someone’s carer. Over time, this could lead to resentment. One of the greatest social impacts is isolation. You may have given up your job or career to care for your loved one and miss that interaction and sense of self. With the advancing years our relationships change, for many reasons, most of which are beyond your control. Keeping in touch with family, friends and past work colleagues can be tiring and time consuming but it is important in the fight against isolation and loneliness.
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of carers said they hadn’t had a day off from caring for more than five years.
When carers were asked what would make the most difference in improving their health and wellbeing, regular breaks from caring was the most popular choice.
december 2018 | Issue 148
Recognising problems and finding solutions It is easy to ignore the first signs of something that may develop into a major problem. Early recognition and then taking action is much more preferable than trying to manage an escalating issue. It may be a worthwhile exercise to set some priorities and goals. Think about how you can do things differently that could benefit you as you age: • Making small adjustments to your daily routines, which take both your own and your partner’s changing needs into consideration • Activities that you take together, for example holidays, may become more problematic due to your partner’s difficulty in transferring, or their ageing bowel may become less predictable. Taking shorter and local breaks may become more convenient • Equally, you need time for yourself. It is important that you take a break, even if it is only for a few hours per week. Try to pick a convenient time once a week to get out of the house, meet up with someone and plan an activity such as shopping or seeing a film at the cinema. If you need a complete break for a few days or
more, find out about respite care via your local social services • E quipment needs may be an issue, and if the equipment you are using is no longer fit for purpose it can have a negative effect both physically and mentally. For example, you could start using a hoist to assist with transferring and that will help to avoid strenuous physical effort and reduce the risk of injury • Financial demands are ongoing, for example covering the cost of a new vehicle or upgrading equipment and purchasing medical supplies which are not covered under the Drug Tariff • It is important to keep up-to-date with which healthcare professionals can offer the appropriate support. If you are unsure of how to access support, staff at your nearest SCI Centre and your GP surgery should be able to offer guidance.
Dealing with the dual role of carer and partner Performing a dual role can be challenging and finding ways for both parties to have equality within the relationship is important, be it taking control of household decisions or how the finances are organised. Each having your own
friends and hobbies will help to maintain the interest in one another.
You are not alone!
There is support out there, whether it be nearby through friends and family, or through a more distant form such as help online. Knowing when to ask for help and getting the appropriate assistance will help prevent unnecessary stress and avoid the risk of standards of care being compromised.
The main support agencies for carers in the UK are: Carers UK www.carersuk.org | T: 0808 808 7777 Carers Trust www.carers.org | T: 0844 800 4361 Age UK Telephone support www.ageuk.org.uk | T: 0800 169 2081
Planning for the future It’s a good idea to have a back-up plan in place, which family members and those closest to you are fully aware of so that they can assist you at short notice. If you can include your neighbours in this plan so much the better, as they may be the people first on hand in any unforeseen emergency. Think about planning in periods of time, for example what might you need in two years’ time or four years’ time. This is dependent on many issues, all of which will be personal to your circumstances. Important areas to include are equipment, care, housing, transport and finance. There are planning tables available to assist you on SIA’s website – click on Learn, Factsheets and then Ageing Well. www.spinal.co.uk
Below is a list of some of the planning steps recommended by SIA members in order to prepare for the time when their carer might not be able to continue to provide care: • Make a list of local care agencies • Make arrangements with your Local Housing Association to move you and your loved one into sheltered accommodation, should you no longer be able to provide care at home • Hire a cleaner or gardener for one day a week • Start putting money aside now for future care needs • Buy a powered wheelchair • Upgrade your bed to one with more assistive functionality • Adapt your vehicle to meet your current and future needs • Make home adaptations to increase accessibility in later years including:
– A wet room – Stair lift – Wider doors – A hoist system – Paved areas in place of grass that surrounds your home.
Summary
Being an unpaid carer is not always a deliberate lifestyle choice, but by staying healthy and happy, maintaining frequent contact with family and friends, and by being well supported by the appropriate healthcare professionals, this will help you to cope.
Don’t forget – SIA’s Advice Line
If you need help but are unsure as to where to start, in addition to the services listed in this article you can call SIA’s Advice Line on 0800 980 0501.
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BREAK THE MOULD
december 2018 | Issue 148
MY OWN LITTLE WEAPON OF MASS DESTRUCTION
DAN BURDEN
Head Of Public Affairs E: d.burden@spinal.co.uk
Written by SIA’s Dan Burden when he was in the midst of parental leave, find out how his son opened his eyes to the non-stop chaos that is the joy of parenthood.
Four in the morning and a child is wailing in pain. Brand new incisors; tiny enamel razor blades are searing through his tissue thin gums, inflicting the first pain he has ever known. Tears streaming down his chubby cheeks, he cuts a lone figure on the bedroom floor as he desperately searches for his mother. Somewhere behind him, he can just about make her out in the darkness. She is straining, leaning back with all her weight as she attempts to haul a flailing, dark shape onto the bed. It is his father, hands clawing at the sheets as the weight of his paralysed legs slowly drags him over the side. As he disappears into the gloom, he whispers: “The child. Leave me… help… the child…” Anyone would think it was irresponsible to leave a baby in the care of a man who still falls out of bed at the age of 42, but I’ve now been at the helm for three months. After nine months with our new bundle of joy, my wife returned to work (it’s 2018 – get with the times, granddad!), and with 12 weeks of our shared parental leave remaining, I felt it was my duty to take a break from work and educate my son in how to become a man. With impeccable timing, the weekend
before I took over the reins, he became mobile. While this has been joyous to behold, I can’t help but feel slightly cheated. The nice, static, low maintenance child that I had agreed to look after has begun lurching all over the place like a beautiful, tiny Quasimodo. This lop-sided, shuffle-cum-crawl is surprisingly efficient, and gets him around much in the same way I tell airlines I would evacuate an aeroplane if it was hurtling towards the ocean in a ball of flames. Parenting a curious youngster is relentless. The minute my back is turned he magically materialises next to one of his favourite toys: gas pipes, electrical sockets, dangerously teetering bookcases and hideously serrated carving knives. Being reliant on the old wheels of steel, I am not as nimble as other parents, so I substitute fleet-footed agility for a more brutal approach. Furniture, toys and even wives, are frequently bulldozed out of my path as I try to save the boy from certain death. Tools help as well. The harness from an old pair of baby reigns has proved invaluable for enabling me to scoop him onto my lap just before he thrusts a biro into his own pupil.
As he attempts to bring a heavy ceramic plant pot down on top of his own head I warn him that that was how daddy ended up in a wheelchair, but he doesn’t listen. Oh the naivety of youth! If he ends up with an SCI he’d better not come crying to me. People ask me what I do with my time now that I don’t have work to fill my days. Unfortunately, the answer is not sitting around having coffee with ‘the girls’, as I had anticipated. My wife didn’t leave me a ready-made group of mummy friends, so instead I’ve been hanging around coffee shops, sidling up to breastfeeding mums and asking if they “come here often”. In reality, we try to get out every day and spend most of our time trundling around town with Ben strapped to my lap, looking for old ladies to tell us how cute we look. When we’re not picking up grannies, I also serve as an entertaining monolith for Ben to cruise around, taunting me with his newly walking legs or giving his immune system a boost by licking the filth off my wheels. Like most disabled people, I cringe at the idea of being inspirational. However, I’m a good daddy and this is without a doubt the most worthwhile thing that I’ve ever done. I would encourage anyone thinking of parenthood to go for it. With the right support and equipment, disability must never be a barrier to living the life that you want to lead.
Things that have helped me as a new parent: Phil & Teds Wriggle Wrapper – www.amazon.co.uk Vaya I-Size car seat – www.gb-online.com/en-gb For general advice from a personal SCI perspective – www.parentsinwheelchairs.com
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final word | SIA VICE-PRESIDENT
www.spinal.co.uk
final word MEET SIA VICE-PRESIDENT
PAUL ROY With a growing demand on many of our most vital services, SIA’s Vice-President, Paul Roy, explains how he has supported SIA over the years and what he hopes to do in the future.
I’ve been a Vice-President of SIA for three years, but I have been involved with the charity for quite some time. I was previously Chairman of the British Horseracing Authority (BHA), responsible for the governance and regulation of the sport. In 2009, I attended a fundraiser at Ascot racecourse, which was sponsored by Sir Tristram Ricketts – Chief Executive of the Levy Board (funding body for horseracing). He had supported SIA for a number of years and it was a passionate cause for him. This was the first time I became aware of the charity and what it does. Sadly, Tristram passed away and the appeal for the SIA Academy that he was supporting at that time was left in limbo. Given my position at the BHA, I was asked to help with the organisation of the fundraising event that was planned to take place at Ascot. That was my first active involvement with the charity. I also had a great leaning towards SIA as I sustained a spinal injury in my 20s, when playing rugby. I was injured at C5/6 and subsequently my rugby career ended. However, I was acutely aware that I was one of the lucky ones and the outcome of my injury could have been gravely different. Therefore, I felt that if I could help in any way I would do so. I have supported SIA primarily in the organisation of fundraising activities and special events. Through my network of connections, I can help
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work there. Whether I have met with the Peer Support Officers, the SCI Nurse Specialists or members of the Advocacy team, I’m very much aware of the phenomenal job they do. It is evident that there is a huge demand on the charity’s services and they need more resourcing in order to meet it. Due to inadequacies in the provision of some specialist NHS services, we know that SCI people are not always able to access the services and support that they need and deserve. That is why SIA works tirelessly through its campaigning, education and support services to ensure it is the expert voice and leading source of support and information for SCI people.
ENSURING THE FUTURE OF SIA’S SERVICES
“It is evident that there is a huge demand on the charity’s services and they need more resourcing in order to meet it” with the introduction of guests and potential donors to the charity. I have also supported the executive team and Governing Council in an advisory role, sharing my commercial background and experience of working in business and the City to advise on aspects of governance and strategy. I have visited SIA House in Milton Keynes on several occasions and I’ve always been hugely impressed by all the people who
I think the biggest challenge facing any charity today is funding. With increasing regulations and growing demands for support, charities are facing more financial pressures than ever before. That is why I focus on supporting SIA’s fundraising efforts through my role as Vice-President. In particular, I feel passionately about the SCI Nurse Specialist service. SIA currently employs two SCI Nurse Specialists – one in the North and one in the South – providing clinical expertise to support SCI people cared for in non-SCI specialist settings. Through their work, they are helping to drive improvements in the quality of care and nursing standards across the SCI community. This is no mean feat, but one that is critical in ensuring that SCI people receive the standard of care that they need in order to live fulfilled lives. It’s an area of the charity that is under-resourced due to the growing demand for such help. Therefore, I will be supporting SIA in a specific fundraising campaign in the New Year to expand and develop this service.
december 2018 | Issue 148
Turn over the page for a message from our chief executive.
classifieds DECEMBER 2018 EQUIPMENT
HOLIDAY TRANSPORT
MOTOMED VIVA 2 MOVEMENT THERAPY Including upper body trainer. 5 years old. Excellent condition. 2 users. Used by high-level SCI man to reduce spasticity and spasms and aid mobility of joints. Phone 07850 761 248. Email charlottelawledge@hotmail.co.uk. £2,500. Collection only, Cheshire.
EXPERIENCED HOLIDAY DRIVER In the UK or worldwide. Contact Kevin 077967 422 840. Ideal assistance for people who employ unlicensed PAs/ carers. Licensed taxi driver with own WAV.
WHEELCHAIRS GENIE RISE AND RECLINE ELECTRIC WHEELCHAIR Powered chair for indoor and outdoor use. This chair stands horizontal to stand you upright and lays flat. Cost over £10,000. Good for circulation, and helping with bowel and bladder. Amazing for paralyzed or disabled as all usable from the handset in the seat. Improve your life expectancy and wellbeing. 18 inches wide seat. Very Versatile. Delivery nationwide available, please enquire to avoid disappointment. Message or call for questions or queries, always happy to help. Yorkshire. £3,750 ONO. Please call 07780 368 427. CHAIR BACK Jay J3 carbon-fibre chair back. 24 x 12 cm, set up for 16in--seat Helium but adjustable. Excellent condition, manual included. Cost £600+, price £375 inc. UK P&P. Email andy@ahink.com
PROPERTY FOR SALE SHREWSBURY Shrewsbury area - Superior 4 bedroom bungalow, beautiful views in 1/4 acre. Former SIA member. 32 mins Gobowen hospital. www.onthemarket.com/ details/5042512 Tel: 01939 336 972.
VEHICLE HIRE, NEW ZEALAND Explore New Zealand using our hire vehicles: wheelchair vans and cars, hand control and left foot accelerator cars. We are known for our friendliness and service. Happy to advise on accessible accommodation and activities. See www.freedommobility.co.nz
HOLIDAY PROPERTY FRANCE SOUTH OF FRANCE, LANGUEDOC A spacious, open-plan villa with an accessible swimming pool that’s designed and owned by a T3 para. Lift to first-floor master bedroom with balcony and ensuite; hydrospa bath and a ‘loo with a view’. Downstairs; two bedrooms and a sofa bed, so can sleep 8 max; wheel-in wet room; fully accessible kitchen and BBQ area. Large garage and covered terrace with great views of the High Languedoc National Park. Easy 5-minute push across the river Orb to the boulangeries, bars and restaurants in a lively, family-friendly village. www.frenchliberty.co.uk Contact Chris Dabbs on: 01604-495435 or 07785338497. Email: frenchlibertyuk@gmail.com COLLIOURE, SOUTH OF FRANCE Ground-floor, two bedroom apartment, sleeps four/six. Level access throughout. Designed specifically for people with spinal cord injury. Ensuite bathrooms, air-conditioning, full heating. Heightadjustable beds, pressure-relieving
mattresses. Separate upstairs apartment available for family or friends. www.origincare.co.uk click on L’Origine or call Nathalie on 00 33 632 56 61 75. BRITTANY, FRANCE Spacious wheelchair accessible holiday accommodation close to the North Brittany coast. Sleeps up to 8 people with 3 bedrooms and 2 bathrooms. Accessible ground floor double bedroom with large ensuite wheel-in shower room. Profiling bed, hoist and shower chair can be provided on demand. Another bathroom, and two further bedrooms upstairs. Situated in tranquil countryside, 20 mins drive to beautiful beaches. Within easy reach of ferry ports. Pets welcome. For details contact Clara and Martin Cronin on +33 296 47 17 86. Email: info@gites-en-tregor.com Website: www.gites-en-tregor.com
Accessible Andalucia www.laspiedras.co.uk 029 212 54321
DISCOVER SPAIN Mediterranean Beaches, National Parks, Moorish Palaces & Cities. Accessible Transport & Stylish Accommodation. Mobility Aids & Care Available.
NEW HEATED POOL !
SPAIN ALCOSSEBRE Superior, front line two bedroom apartment with ensuite level access shower. Modern low rise complex, beautifully kept gardens, swimming pools. Large terrace overlooking beach. Wheelchair accessible throughout. Level access to bars and restaurants. Secure parking. Email tedbid@aol.com Tel 07770 567 132.
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CLASSIFIEDS
SPAIN, COSTA BLANCA, JAVEA Spacious, fully-equipped, luxury, five-bedroom villa, sleeps 10. Three bathrooms (two ensuite, one with roll-in shower). Flat plot, fully accessible gardens. 12m x 6m pool with hoist. Sky TV. 2.5km to beach. Vehicle required. Contact John Kenny 07721 336 747 enquiries@casadefloresspain.co.uk www.casadefloresspain.co.uk SPAIN, COSTA BLANCA, TORREVIEJA Established, detached family villa with lovely gardens in sunny Torrevieja on the Spanish Costa Blanca. Huge wheelin swimming pool. Custom built for C5 owner. Close to beach and all amenities. Airport 20-mins. Converted vehicle also available to hire. For details 01262 676 015 www.disabledvilla.com
www.spinal.co.uk
www.algarve-vacations.com e-mail info@algarve-vacations.com or call 00 351 919 032 377.
africa
Ever wanted to do a Safari? Or travel to South Africa, Botswana or Namibia? Didn’t think it would be possible for a disabled traveller? Let us show you how it can be done.
www.endeavour-uk.co.uk Contact: Becky & Paul Hill Tel: 01202 630075 Email: becky@endeavour-uk.co.uk
PORTUGAL PORTUGAL, ALGARVE Your home from home in the sun including accessible transport and airport transfers. Owned by C4 tetraplegic, 20-minutes from Faro airport with stunning views and privacy. Three twin bedrooms, two with wheel-in showers. Pool with hoist heated to 25ºC. Inclusive accessible vans & airport transfers, electric up and down bed, electric indoor hoist, shower/commode chairs etc. Not to be missed. See full details on our comprehensive website. Tel: 00351 289 414 687 Email sia@ouricodomar.com Web: www.ouricodomar.com
CYPRUS
ALAMANCIL, ALGARVE Outstanding, fully-accessible luxury private villa set in beautiful countryside. Three bedrooms, all ensuite with wheel-in showers. Private pool with hoist. Comfortable lounge/dining rooms and well-equipped kitchen. All you could wish for in a holiday home and so much more! To contact us call 01530 833 690 or www.villas-algarve.co.uk
VILLA CARPE DIEM, MARONI Consistently rated five stars, spacious, accessible private villa, pool and hoist. Wheelchair accessible vehicle. Shaded verandah, breathtaking sea and countryside views. 4 bedrooms, 4 bathrooms. Accessible suite–wheelin wetroom, hoist, shower chair. Theraposture profiling or Baltic beds, ceilinghoist. Raise recline chair. Assistance available. Access statement. Child friendly. Designed with SCI person. www.villacarpediem.co.uk Phone Andy 00357 99968418 email office@villacarpediem.co.uk
PORTUGAL ALGARVE Luz do Sol 4 bedroom villa with pool enjoys panoramic sea views, peaceful location Sleeps 7 spacious and light. Complimentary accessible car, pool lift, hoist, shower trolley, shower/commode chair, massage table, airport transfers. Fantastic family holiday villa,
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POLIS, CYPRUS Three-bed accessible villa Private pool with electric pool hoist, wide steps and handrails. Ramp access throughout the villa and grounds. Walking/pushing distance from shops, village and beach (with sea trac chair available in the summer season - see website). Wheel-in wet room with wall mounted shower seat and self-propelling shower chair available. Accessible hob and sink in kitchen. Child friendly. Owned and designed by an SCI person. Email: timilyvilla@outlook. com website: www.timilyvilla.co.uk
AMERICA ORLANDO, FLORIDA Paraplegic owned 5 bed/4 bath villa with fantastic lake views. Our villa has open plan living areas and level access throughout. We have a wheel-in-shower & shower chair, a x-large pool & Jacuzzi, both accessible using our pool hoist. Free Wi-Fi and a short drive to attractions and local amenities. www.ayersfloridavillas.com, E-mail lucy@ayersfloridavillas.com
SCOTLAND CLOBER FARM, MILNGAVIE, GLASGOW Fully accessible self-catering apartment & landscaped garden. Clober Farm is situated 45 mins from Loch Lomond & the Trossachs National Park and only 7 miles from Glasgow. Master bedroom with Liko 200 ceiling tracking hoist, height adjustable profiling bed and Invacare pressure relief mattress. En suite wetroom. Sleeps 6. Pets welcome. Open all year. For more information and to book: t:0141 427 7686, e: info@sisonline.org, w: www.cloberfarm.co.uk
ENGLAND HEREFORD HOLIDAY COTTAGES Fully accessible self-catering accommodation in rural location. Sleeps 2/6 or 8. Spacious wet room. Ideal for family get togethers or exploring Hereford and the Welsh borders. Open all year. www.durstonefarm.co.uk or ring Sarah 07890 921 686. TODSWORTHY FARM HOLIDAYS, CORNWALL Luxury and spacious barn conversions on a family run working farm. Located in an area of outstanding natural beauty in the picturesque Tamar Valley. Owned by a C6/7 tetra both self-catering cottages are superbly adapted for wheelchair users and their families. Both cottages sleep 6 and have a level access bedroom with a spacious ensuite wetroom. Shower chair, hoist and profiling bed can be provided. Both cottages are pet and family friendly. Perfect location for touring Devon and Cornwall. Open all year. Tel 01822 834 744 www.todsworthyfarmholidays.co.uk
december 2018 | Issue 148
RATCLIFFE DISABLED HOLIDAYS C5 quadriplegic owner. Overhead electric hoists. Electric hi-lo beds. Wheel-in showers. House flats sleep six-10. Open all year. Heysham on Morecambe Bay. Superb sea and mountain view. Access to five-mile promenade. Caravans on Haven Parks in Southern Lake District and at Filey near Scarborough. www.theukweb. com/disabled holidays or phone for more information Allan or Jan 01274 588 142. TREWORGANS FARM HOLIDAYS, MID CORNWALL Specially converted cottages (sleep 4 & 6) that are fully wheelchair accessible. FREE use of 4-section electric profiling beds, air mattresses, electric hoists, shower chairs and rise/recline chairs as well as numerous other mobility aids. All bedrooms have en-suite facilities – each property has one level-access wet room. Adapted kitchens. Accessible decked patio areas. Detached. Ample parking areas. Care available from local agency. Exposed beams, wood burner. Ideal location for exploring the whole county. Tel: 01726 883240 or 07762 173860. www.treworgansfarm.co.uk POOLE, DORSET Hill Lodge. Owned by C5/6 Tetra. Holiday let in beautiful rural location just 10mins from Poole Harbour. Three double ensuite bedrooms. Sleeps up to 6 people. The accessible room is on the ground floor with ensuite wet room. Shower chair provided. Electric height-adjusted and profiling bed. Accessible kitchen with wheel-under hob and sink. Free WI-FI. Level access and exclusive use of gardens. Further equipment provided on request. View at www.endeavour-uk.co.uk Contact Becky becky@endeavour-uk.co.uk 01202 630 075.
WALES TOWYN, NORTH WALES Brand New 2018 Willerby, Richmond fully disabled caravan, sleeps maximum of 5 with full wet room including fold
down shower seat, hand rails and fold down rail next to the toilet. Wide sliding doors with ramp access and low kitchen worktops and cooker, equipped with banana transfer board, reach grabber and portable helper frame. For prices and availability, pictures and Golden Gate’s facilities. Contact: email: sbgoldengate@outlook.com phone: 07858044721 Facebook: www.facebook.com/sbgoldengatetowyn GLAN Y GORS COTTAGE Snowdonia. Fully accessible, self-catering cottage in beautiful rural location, with open views of Snowdon and surrounding mountains. 4 bedrooms, 3 bathrooms, large kitchen/diner, lounge with log fire. Ground floor bedroom and shower room. Hospital bed and mobile hoist available. Sleeps 10 (12 with sofa bed), reduced rates for smaller groups. See website for details: www.wilsons-holidays.co.uk, info@wilsons-holidays.co.uk, 01286 870 261.
SUPPORT SERVICES AGEING WITH CONFIDENCE Are you feeling overwhelmed with day-to-day challenges of living with a spinal cord injury as you age? I am an ageing well consultant who provides advice and tailored plans to prepare for and manage ageing with a disability or long-term condition. For a free 15 minute consultation, visit www.age-confident.com or call Joy Sinclair on 07786 615 078. JO-ANNE’S PERSONAL ASSISTANCE SERVICE Now taking bookings for 2019. If you require a personal assistant for home or abroad, a business or pleasure trip, please call, JPAS on 07500 703 004. Email: jojpas@gmail.com
ADVERTISING RATES
Advertisements placed in FORWARD will be posted onto SIA’s website at www.spinal.co.uk after the magazine is published.
Member rates The charge is 40p per word with a minimum charge of £15 for any one advert. Non-members The charge is 70p per word with a minimum charge of £20 for any one advert. VAT will be added to the cost of all adverts. You can email your advertisement to the editor, Breda Duggan: b.duggan@spinal.co.uk Please telephone 01908 604 191 to pay by card. The closing date for contributions for the February 2019 issue is 9 January 2019.
SIA strongly recommends that before committing to an advertised product, service or accommodation in this section, you first confirm all aspects of the advertisement and your required needs directly with the advertiser. It is advisable to obtain written confirmation that any facilities or special needs that you have can be met by them, ahead of making a booking/agreeing to a purchase. SIA cannot take responsibility for any inaccuracies or omissions and purchases/ bookings made are entirely at your own risk. If you have any comments, please email b.duggan@spinal.co.uk
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