SIA Forward

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26 HEALTH: SCI RESEARCH

DAILY LIVING: AEROBILITY

S I A N E W S | H E A LT H | DA I LY L I V I N G | V O LU N T E E R I N G | I N T E R V I E W S

F RWARD OCTOBER 2018 | NO 147

CANALS OF AMSTERDAM Read about the ‘Venice of the North’ PAGE 38

BROUGHT TO YOU THROUGH OUR PARTNERSHIP WITH

WELCOME

WELCOME ➜ SIA IN NUMBERS In 2017-18, SIA’s Advocacy team … … dealt with

1,744 enquiries to the Advice Line … provided

180

telephone counselling sessions to SCI people and their families and friends … provided NHS Continuing Healthcare and social care casework support to

152 people

PRIORITISING YOUR HEALTH his issue of FORWARD covers some of the key areas of health that matter most to SCI people.

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Following the launch of our SCI Nurse Specialist service in 2016, the demand for such support from our members has grown at a significant rate. Whether in the acute stages of injury or later in life, it is paramount that the care needs of SCI people are understood and met when they are treated in nonSCI specialist clinical settings. In response to the demand for our unique service, we have expanded the team. Turn to page 10 to find out more and meet our new Nurse Advisor.

You can also find out how SIA is campaigning for better bowel care provision outside of SCI Centres. We are demanding that all NHS Trusts meet the bowel care needs of SCI people when they’re admitted to hospital and in the community, and have policies and procedures in place to provide such vital, yet basic, care. More on this can be found on page 9.

Ageing with SCI is a long-standing concern for many people and, in this issue, we look at how to promote bladder health in later life through diet and lifestyle choices. You can also read about the latest research being carried out to prevent catheter-associated urinary tract infections in long-term catheter users. To find out more about the study and to participate in the next phase of the research, please turn to page 26.

I hope you enjoy reading the October issue and, as always, if you’d like to share your experiences of SCI in a future issue, contact the Editor, Breda Duggan, at b.duggan@spinal.co.uk

Rupert Earl SIA CHAIR

FIND OUT MORE ABOUT OUR COVER ARTICLE ON PAGE 38

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 DESIGN & PRINT Headlines Communications Agency | www.headlines.uk.com

FORWARD | OCTOBER 2018

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CONTENTS

CONTENTS

OCTOBER 2018 | NO 147 SIA NEWS 08 Updates from SIA 10 Better bowel care 11 Bed closures 12 Public Affairs 16 New volunteers

FORWARD FOCUS 30 Inclusive fashion 32 Self-image

DAILY LIVING 38 Travel 42 Flying 45 The family perspective

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VOLUNTEERING

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46 Sharing experiences

HEALTH 20 Ageing 22 Urinary health 26 SCI research 28 Arachnoiditis – surviving

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the pain

FINAL WORD 54 SIA Vice-President

FORWARD SUBSCRIPTION You can subscribe to FORWARD using one of the

Cheque and the order form should be sent to

following methods:

Jackie Telfer, SIA House, 2 Trueman Place,

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

Oldbrook, Milton Keynes, MK6 2HH Tick box: I enclose a cheque for:

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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.

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.

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31 Facebook: search ‘Spinal Injuries Association’ Twitter: www.twitter.com/spinalinjuries Message Board: www.spinal.co.uk/forums/

WWW.SPINAL.CO.UK FORWARD | OCTOBER 2018

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NEWS: XXXXX

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OCTOBER 2018 | FORWARD

SIA NEWS SECTION

SIA NEWS

TURN OVER THE PAGE FOR UPDATES FROM SIA

SIA NEWS | PUBLIC AFFAIRS | SCI NURSE SPECIALISTS | FUNDRAISING

MAKING YOUR VOICE HEARD

CAMPAIGNING

NEWS

Find out how we have been campaigning on the issues that matter most to you.

FORWARD | OCTOBER 2018

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NEWS: UPDATES FROM SIA

PEER SUPPORT – FROM INJURY AND BEYOND As a charity, we support our members at all stages of life, from the early days following injury and throughout all of life’s challenges and milestones. We’d like to introduce you to Carl Martin, our new Peer Support Officer for the South Coast.

CARL MARTIN PEER SUPPORT OFFICER, SOUTH COAST E: C.MARTIN@SPINAL.CO.UK sustained my SCI on 26 September 2016. I was taking part in a Brands Hatch motorcycle track day when I had a highside crash, which resulted in a T5 complete injury.

I was airlifted from the circuit to King’s College Hospital in London, where I was admitted to the intensive care unit. I then spent six weeks at St George’s Hospital and a further three months at the Stanmore SCI Centre.

I first became aware of SIA when I was visited by SIA’s Peer Support Officer for London, Lady-Marie Dawson-Malcolm.

She came to see me in St George’s Hospital when I was still coming to terms with what had happened. Her visit was so important; I was able to see someone with an SCI who was living a fulfilled life.

During the first few months of injury, people worry about a wide range of things.

For some it’s going back to work, while others worry about sex and relationships.

For me, my biggest concern was getting home and looking after my daughter, who was only two-and-a-half at the time.

I was well aware of the impact my SCI was having on my family and I was glad that Lady-Marie was able to also offer support to my wife, as she too tried to adapt to our new reality. Between visiting me in hospital, looking after our daughter and holding down a job, she had a lot to think about. Thankfully, her employer was supportive, which made a huge difference.

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quitting my job and retraining while paying off a mortgage was not an option.

That all changed when I sustained my SCI. I found myself in a position where I could no longer do my job. I had no choice but to refocus and channel my energies into something new. I wanted to become an SIA Peer Support Volunteer but, as I was applying, the role of Peer Support Officer for the South Coast became available, so I applied for the position.

PEER SUPPORT

From my experience of having used the Peer Support service and now delivering support to other SCI people, I know how invaluable it is. I think it increases your confidence at a time when you need it most.

Knowing that you’re talking to someone who is in the same situation as you makes a world of difference. A nurse or doctor can tell you so much but, if they haven’t been through it physically themselves, their words can be hard to relate to.

I really appreciated all of the visitors I had while in hospital, but the one thing I enjoyed most was meeting others who had only been injured for one or two years. Again, it’s that relating issue. In the acute stages you don’t think about what your life might look like in 20 years’ time. You can only

look as far as the next 12 months. Meeting someone who is still in the early stages themselves gives you confidence that you can get your life back to a reasonable level in a relatively short amount of time. That is what is so great about SIA’s Peer Support team – there’s great diversity in terms of the team’s levels and durations of injuries.

I’ve only been injured two years and I’m still learning about my SCI and body, as slight neurological changes continue to take place as my body settles down. This means I can very much relate to others who are still in the early stages of their rehabilitation.

A NEW START

While my experiences over the last few years have largely been out of my control, I try to look positively on all that has happened. I can now focus on what I want to do and spend more time with my daughter. It’s these precious moments that I won’t get back and would not have had if I still worked full time. It goes without saying that I experience frustrations and limitations; I’d be lying if I said I didn’t. But overall, everyday life is pretty normal for me now. I can honestly say that I live a fulfilled life and I’m glad to be able to support other SCI people and their families through my role as a Peer Support Officer.

A CHANGE IN DIRECTION

Prior to my injury, I worked as a field service engineer. I was in the role for 13 years, but I had been considering a career change for a while. I wanted to take on a role that would make a difference and have a positive impact on people’s lives. However,

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OCTOBER 2018 | FORWARD

➜ C arl Martin provides support to people living in Sussex, Surrey, Kent and Hampshire,

and to inpatients at the Salisbury SCI Centre. To speak to Carl or another member of the Peer Support team, email outmgr@spinal.co.uk, call 01908 604 191 or complete the referral form on www.spinal.co.uk. Carl’s position is sponsored by Trethowans Solicitors.

NEWS: UPDATES FROM SIA

SIA VACANCY

PEER SUPPORT OFFICER – WALES & BORDERS he provision of peer-led support to newly-injured people and their families is at the core of SIA’s service delivery activities, with our team of Peer Support Officers working in a variety of settings up and down the country, including in SCI Centres.

Their role is to provide much-needed support to those coming to terms with the

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impact of such a life-changing injury, acting as positive role models and playing an active part in the delivery of other frontline SIA services.

Our PSOs also act as ambassadors for the charity, particularly when working to forge relationships with healthcare professionals and/or key supporters of our work.

We are now looking to recruit a Peer Support Officer to join our team and provide support specifically within the

Wales & Borders region, covering South Wales, Gloucestershire, Herefordshire and Bristol. Due to the nature of the work we anticipate that the postholder will be spinal cord injured, and will be required to undergo relevant checks with the Disclosure & Barring Service.

This post is part-time (30 hours per week by agreement) and is offered at a salary of £20,706 per annum (£25,883 pro rata) plus access to life assurance and pension schemes.

Visit www.spinal.co.uk to download a job information pack or email j.sims@spinal.co.uk to request the pack in Word format.

The closing date for completed applications is Friday 26 October 2018. Interviews will be held at SIA’s offices in Milton Keynes on Wednesday 7 November 2018.

EXPANDING OUR SPECIALIST SERVICE READ ON FOR UPDATES FROM SIA’S SCI NURSE SPECIALIST SERVICE AND MEET OUR NEWEST RECRUIT, NURSE ADVISOR HELEN PETTMAN-TIDESWELL. CAROL ADCOCK SCI NURSE SPECIALIST E: C.ADCOCK@SPINAL.CO.UK DEBBIE GREEN SCI NURSE SPECIALIST E: D.GREEN@SPINAL.CO.UK HELEN PETTMAN-TIDESWELL NURSE ADVISOR E: H.PETTMAN-TIDESWELL@SPINAL.CO.UK SIA’s SCI Nurse Specialist service is now two-and-a-half years old. With 500 referrals since its inception, it is clear to us (though not a surprise) that management of the neurogenic bowel is the one aspect of SCI care that causes the most concern for our members and care teams alike. Much of our work has focused on many aspects of helping to achieve a better level of service for those who require this intervention.

Collaboration with the Royal College of Nursing, Nursing and Midwifery Council and NHS England, has

produced some exciting results.

The NHS England Excellence in Continence Care document published this year will for the first time include a paragraph on neurogenic bowel dysfunction. Along with the issue of a Safety Alert from NHS Improvement, which highlights to all healthcare providers the need for a policy to support bowel care interventions and prevent Autonomic Dysreflexia, SIA’s SCI Nurse Specialists developed a draft policy template that is adaptable by NHS Trusts, care organisations and agencies.

Regular delivery of our training day – Managing the Neurogenic Bowel: Skills and Competency Training – for both registered nurses and HCAs, PAs and carers, has been exceptionally well received, with nearly 100 individuals attending this educational initiative so far. These are nurses and care staff keen to make a difference to the care they offer SCI patients and clients and who take the message back to their workplace.

NEW TEAM MEMBER

We were recently joined by Helen PettmanTideswell, our new Nurse Advisor, who will be the first point of call for enquiries to the SCI Nurse Specialist service.

Helen says: “I have had various roles in my career so far, including working abroad and mostly on medical wards in the UK. My most recent role was for a private medical company as a Clinical Nurse Advisor, where I was linked to hospitals to educate staff and improve standards in pressure area care. I am very much looking forward to my new role and helping to make a difference in our members’ lives.”

When you contact our SCI Nurse Specialist service, Helen will be able to discuss your enquiry/concern, offer advice, and forward on your case to the SCI Nurse Specialist who covers your area. Helen will liaise with you to follow up on your progress or the success of any advice offered. She will also join the Nurse Specialists on some of their visits and will become involved in helping to deliver some of our educational offerings.

FORWARD | OCTOBER 2018

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NEWS: UPDATES FROM SIA

SIA DEMANDS BETTER BOWEL CARE We have taken action and urged every NHS Trust to make poor bowel care in hospitals a thing of the past for SCI people. n August, we contacted all NHS Trusts demanding that they meet the requirements of the recent NHS Improvement Patient Safety Alert, by adopting SIA’s sample policy on good bowel care for SCI people. If you haven’t already done so, we ask that you write to your local NHS Trust to urge them to do the same.

The Alert highlighted widespread concerns regarding how NHS Trusts meet the bowel care needs of SCI patients when they’re admitted to hospital. It requires all Trusts to have policies and procedures in place to safely manage SCI patients’ bowel care needs.

SIA members have all too frequently reported harrowing experiences of digital bowel care, both when they are admitted to NHS non-SCI specialist hospital settings and in NHS community nursing provision.

Our own research shows that 52% of NHS Hospital Trusts do not have a policy or

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guidelines in place, while 41% of Trusts do not run courses to train staff in bowel care techniques. An SIA bowel management survey of our SCI members saw half of respondents rating bowel management in their hospital as only 0/10 or 1/10, with 40% saying they had developed other complications as a result of the bowel care – or lack of – they had received.

The Alert calls on all providers to review both local clinical policy as well as guidance relating to bowel assessment and management, and training and education provision by 25 January 2019, so that patients have access to staff who

are confident and competent in providing safe bowel care.

We want to work alongside Trusts to drive up standards of bowel care for SCI people and help them meet NHS Improvement’s deadline of January 2019 to introduce new care standards. That’s why we’re giving every Trust a head start by sending them a sample policy that they can quickly and easily adopt and implement.

To request a copy of the sample policy please contact scinursespecialists@spinal.co.uk

HOW CONCERNED ARE YOU ABOUT QUALITY OF CARE?

CATHY MACMILLAN INDIVIDUAL GIVING MANAGER E: C.MACMILLAN@SPINAL.CO.UK 10

OCTOBER 2018 | FORWARD

We know that quality of care is a key concern for many of our members, and supporting the care needs of SCI people plays a fundamental role in many of our services and activities.

SIA’s Advice Line, SCI Nurse Specialist service, and Advocacy and Public Affairs teams, all play a role in assisting our members when the quality of their care is compromised or inadequate.

As a charity, we need to tailor our fundraising activities to ensure that we can continue to fund the services that will have the biggest impact on the lives of those affected by SCI. So, this is where you come in. We need to know how you feel about your current quality of care and if you will support us to develop these services in the future. We hope you will be able to answer the following questions:

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Are you concerned about the quality of care someone with an SCI would receive if admitted to a general hospital? Please choose a number from 1 to 5, where 1 means you are not concerned at all, and 5 means you are extremely concerned.

As a supporter of SIA, how important is it to you that we offer services focusing on quality of care in hospitals and other care settings?

Would you support an appeal to help us to improve the quality of healthcare for SCI people?

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Please send your feedback to me at c.macmillan@spinal.co.uk. We value your opinions and appreciate you taking the time to share your thoughts.

NEWS: BED CLOSURES

SPECIALIST SPINAL CORD INJURY SERVICES Are you aware of the bed crisis in SCI Centres?

Find out how SIA’s Public Affair’s team has been campaigning to address this ongoing concern.

BACKGROUND

The SCI Service in England provides high-quality, specialist care for SCI patients from eight SCI Centres. However, there is worrying evidence of failures to provide equitable, consistent and appropriate care.

Waiting times for admissions average eight weeks, leading to capacity pressures in other parts of the NHS. Additionally, SIA estimates that up to a quarter of SCI people do not receive any treatment from specialist centres, leading to poorer outcomes.

WINTER AND TEMPORARY BED CLOSURES

A recent NHS review recommended an additional 54 beds in SCI Centres are needed to meet demand. Despite this conclusion, general medical patients are occupying existing SCI Centre beds, due to winter capacity pressures within host NHS Trusts. There are also bed and entire ward closures across the service due to nursing staff shortages.

As a result, SCI people are finding it increasingly hard to access specialist healthcare and find themselves receiving unsuitable and potentially dangerous care in hospitals that lack expertise in their condition.

FREEDOM OF INFORMATION REQUESTS

In March 2018, we made Freedom of Information (FOI) requests to the eight NHS Trusts that host SCI Centres, to establish the impact of winter bed pressures on centres between March 2017 and February 2018.

FOI REQUEST FINDINGS

• Two centres lost more than 1,000 bed days over the year due to the reallocation of beds during the winter months. A further centre lost more than 500 days.

• Only three SCI Centres ensured that vulnerable SCI people were not in beds next to potentially dangerous – and mobile – general medical patients.

• All SCI Centres had significant admissions waiting lists during this time period.

• Worryingly, one of the two NHS Trusts identified as the worst for SCI Centre winter bed closures gave us patently inaccurate data. The other claimed to be unable to answer a question answered by all other Trusts.

The NHS host Trusts with large A&E departments were the worst offenders in terms of reallocating beds in specialist centres to non-SCI people.

PARLIAMENTARY QUESTION

In May 2018, we got Ian Lucas MP, Chair of the All Party Parliamentary Group on SCI, to ask the Secretary of State for Health and Social Care when beds occupied by non-SCI patients in certain SCI Centres would be returned to use by SCI people. The Department for Health and Social Care’s response was that: “NHS England’s national team has advised that it is not aware of any intelligence to suggest that an SCI patient has been denied a specialist bed during the winter period due to its use by a non-SCI patient.”

OUR RECENT CAMPAIGNING

The Department for Health & Social Care’s reply to the Parliamentary Question was clearly contradictory to what we know from the Freedom of Information responses, in addition to what we had been told by representatives from Regional Trauma Networks, who shared examples of SCI people being denied access to the service.

Simply, NHS England appeared to be in denial. There was no indication from them,

TIM NICHOLSON PUBLIC AFFAIRS OFFICER E: T.NICHOLSON@SPINAL.CO.UK

or host Trusts, of how these perennial problems would be resolved. There was no oversight of the issue, nor recognition of the impact of bed closures on the wider NHS. So, in recent weeks, we have been campaigning hard to bring these issues to the attention of key stakeholders and to discuss how to ensure that the capacity of SCI Centres is not compromised, so that SCI people receive the specialist care that they require.

We have raised the matter with both the Clinical Director of Specialist Services and the Director of Specialised Services in NHS England.

Most recently, we secured a meeting with Lord O’Shaughnessy, Parliamentary UnderSecretary of State for Health (Lords) in the Department for Health and Social Care.

Following this constructive meeting, Baroness Masham (SIA Founder and President) wrote to Lord O’Shaughnessy asking him to investigate relevant issues, as the inefficiencies of the wider NHS are quite clear. However, they appear to be at the mercy of Trust-centric decisions focused primarily on meeting the needs of local non-SCI populations.

We also reminded Lord O’Shaughnessy of his offer to look into workforce planning for staffing SCI Centres, particularly nursing. It is clear that all SCI Centres are experiencing nursing shortages, yet there does not appear to be anyone seeking to address this at a national level.

We will issue an update as and when Lord O’Shaughnessy responds. In the meantime, we will seek to influence the Government at every opportunity, to ensure that Ministers always act in the very best interests of SCI people.

FORWARD | OCTOBER 2018

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NEWS: PUBLIC AFFAIRS

SIA AS A CRITICAL FRIEND Making sure the needs of SIA’s members are fully understood and incorporated into national policy decisions is at the heart of our campaigning work, and previous articles have focused on how our engagement with MPs and others contributes to this. Perhaps less well known is SIA’s role as a ‘critical friend’ to NHS England and the Department of Health and Social Care. Dave Bracher explains more.

DAVE BRACHER CAMPAIGNS MANAGER E: D.BRACHER@SPINAL.CO.UK

n recent years and primarily through the activities of Brian O’Shea in the Public Affairs team, SIA has positioned itself as a valued ‘critical friend’ to both NHS England and the Department of Health and Social Care (DHSC).

We can now constructively engage with these organisations through our technical expertise and practical knowledge as endusers and, at the same time, ensure that

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the needs of SCI people are considered and understood at the highest levels.

Brian’s input into the revised National Framework for NHS Continuing Healthcare (CHC) is a great example of this, as it was saved from being an absolute mess through his determination to secure the best outcome for SCI people. There were some challenging conversations with DHSC during this process but, as a ‘critical friend’, these (crucially) were always seen on both sides as constructive. Since then, we have had further meetings with DHSC and NHS England, as the CHC Strategic Improvement Programme takes shape ahead of the revised Framework coming into force from 1 October 2018.

The NHS Continuing Healthcare Strategic Improvement Programme started in April 2017 and will run until March 2019. The Programme objectives include

wanting to reduce variation in patient and carer experience of all aspects of CHC, ensuring assessments occur at the right time and place, and working with Clinical Commissioning Groups across the country to identify the best practices that can then be adopted nationally.

A key aspect of the Programme is that any changes to CHC should be co-designed.

This means any changes are informed by people involved in, or in receipt of, CHC to ensure the best possible services for those who need them. SIA’s previous activities have put us in a strong position to help influence this. We have had several meetings with Jim Connolly, the National Director for the Programme, as well as his colleagues, and we will continue to advocate for SCI people, influence the agenda and be that ‘critical friend’ at every opportunity as the programme reaches its conclusion.

RESTORING FAITH IN DEMOCRACY

Read on to find out about SIA member Alister Marshall’s experience of engaging his local MP regarding his concerns about health and social care provision.

I had a positive experience recently when I went to see my MP. I want to urge anyone who, like me, has thought about going but never actually done it. If there is something that matters to you, then go and see your MP. I went to see my MP because I am really concerned about health and social care. These provisions are under review at the moment and I am sure that I am not the only SCI person who worries about this.

When I first met my MP, it was clear that he did not understand the impact of the many issues surrounding social care funding for someone with a lifelong disability. He asked me lots of intelligent questions, worked through the issues and, as he began to understand, he became visibly concerned.

After several further phone calls, he went to see the relevant Minister on my behalf and has now arranged for me to speak to the Minister in person. I never expected it to go this far or to be this useful.

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It turns out that my MP respects the go-getting, live-your-life attitude that many of us cultivate in order to survive life with an SCI. He was simply unaware of the obstacles that are in our way and, once I had explained them to him, he decided that he wanted to make things better. He has backed this up by his actions and he has rekindled my faith in democracy.

These are the people who will decide whether you and I get enough help to live a proper life, or just to exist and no more. Get out there and make sure that they know what matters to you.

ALISTER MARSHALL

To find the MP for your local constituency and their contact details visit www.parliament.uk

NEWS: FUNDRAISING

A KIND CHRISTMAS OCTOBER

LAUREN THEODOSI COMMUNITY FUNDRAISING OFFICER E: L.THEODOSI@SPINAL.CO.UK

Could you spare a few hours in London this December to support our Christmas fundraising activities? n 2016, Hodge Jones & Allen hosted a bucket collection at Euston Square as part of our Christmas collections and helped raise more than £500 for SIA. Armed with facts about SCI and smiles on their faces, our volunteers informed members of the public how their spare change could make a huge difference to the lives of SCI people.

As part of this year’s A Kind Christmas campaign, we are venturing to London in December to raise awareness of SCI over the festive period. Check out the dates and locations listed on the events calendar opposite.

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We still need plenty of extra hands throughout the month, so please join us to help raise as much money as possible! If you work near one of our collection points, why not ask colleagues to join you on the day?

We’ll provide you with a fundraising kit, so all you need to bring is yourself and a smile. By volunteering just a few hours, your help will enable us to continue supporting more than 10,000 SIA members, who rely on our vital services to get them through some of the most challenging times of their lives.

Get in touch today and be part of our A Kind Christmas campaign this year!

SUPPORT SIA WITH PEDAL POWER IN 2019 Registration is now open for not one but two exciting cycling challenges, so why not hop on the saddle and get pedalling for SIA? In May 2019, we’ll see the return of our overseas cycle with a five-day European adventure conquering Croatia, Austria, Hungary and Slovenia.

Or, if you fancy something a little closer to home, why not join #TeamSIA for RideLondon 2019? Next year we want to enter our biggest team yet and you could line up in the Queen Elizabeth Olympic Park alongside us for just £10! Want to know more?

Email Chris at c.massarella@spinal.co.uk today.

A GOLD MEDAL EFFORT

October will also see the beginning of another very special challenge, as our Paralympic Gold Medal-winning Ambassador Karen Darke will be cycling the length of the Ganges for SIA! Karen will ride from the river’s source high in the Himalayas down to its spiritual centre in Rishikesh, with every penny raised going towards her overall target – raising £79,000 for SIA! To follow Karen’s progress or to support her quest, visit www.justgiving. com/fundraising/karen-darke

11 OCTOBER EXPERT WITNESS SEMINAR, MANCHESTER 14 OCTOBER

MANCHESTER HALF MARATHON AND ROYAL PARKS HALF MARATHON 15 OCTOBER

SOLICITORS’ TRAINING DAY, LONDON 20 OCTOBER SIA’S SKYDIVE SPECTACULAR

DECEMBER

CHRISTMAS BUCKET COLLECTIONS 4 DECEMBER

LONDON BRIDGE STATION, ALL DAY LEICESTER SQUARE UNDERGROUND, FROM 3PM 6 DECEMBER KING’S CROSS STATION, ALL DAY VICTORIA STATION, ALL DAY 14 DECEMBER HYDE PARK CORNER UNDERGROUND, FROM 3PM 19 DECEMBER BAKER STREET UNDERGROUND, FROM 3PM TOTTENHAM COURT ROAD UNDERGROUND, FROM 3PM

SKYDIVE GOOD LUCK On 20 October, 25 adrenaline junkies will participate in our first ever Skydive Spectacular in order to raise £15,000 for SIA! With our youngest jumper being 17 and our oldest topping 70, it really will be a day for all ages. We are thrilled to have some of our corporate members involved – Bolt Burdon Kemp, Brethertons, Freeths, Shoosmiths, Spencers Solicitors, Tollers and our ongoing supporters, Williams Racing.

Thank you for taking a leap of faith for SIA!

FORWARD | OCTOBER 2018

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NEWS: FUNDRAISING

LONDON MARATHON BALLOT ANNOUNCEMENT

CHRIS MASSARELLA COMMUNITY AND CHALLENGE EVENT FUNDRAISING MANAGER E: C.MASSARELLA@SPINAL.CO.UK ctober 2018 will see the start of preparations for yet another London Marathon, bringing with it the chance for people to do amazing things to support SIA, and SCI people.

If you entered the ballot and were lucky enough to be offered a place (or you know someone who did), please do consider joining #TeamSIA where your support really can make a massive difference.

If you missed out but are keen to take on the challenge, email me on the address above to register your interest.

Alongside support and advice right up to race day, all our runners will get an SIA-branded running jersey and a fantastic fundraising pack, and will be treated to a wonderful post-race reception and goody bag to celebrate on the day.

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If you need more inspiration, read on to find out why one of our 2018 runners joined #TeamSIA. Lorraine’s brother Simon sustained an SCI while doing something he loved – playing rugby. A scrum collapsed during his first game of the season and sadly, due to the level of Simon’s injury, he passed away eight weeks later. In her own words, the motivation for Lorraine to do something to support SIA in memory of her brother was “simple”.

“The nurses supporting Simon when he was injured kept mentioning SIA and the charity’s support was amazing. So, when I got an email asking for people to run for SIA, I knew I needed to give it a try.

“Simon was an amazing character – charming, a practical joker and a wonderful son and brother. I miss him every day. His injury put things into perspective for us and I have since done things that would have been unthinkable before (including running

a marathon), which I know he would have found hysterical to imagine.

“I’ve never forgotten the love and support shown for Simon. Friends, family and locals managed to raise more than £25,000 for him after his injury. I promised myself that if I could ever do something to support people in the same situation I would. It took 20 years, but I got there eventually!”

Not only did Lorraine manage to raise more than £5,500 for SIA by completing the marathon, she also has the honour of saying she took part in the hottest London Marathon on record! Although Lorraine’s first thoughts after finishing were of exhaustion, she soon realised just what she had managed.

She said: “Disbelief was followed by exhilaration and pride at what I had managed. I still feel so, so proud and am very glad I made the decision to reply to SIA’s email! The race was tough, but whenever I struggled I thought ‘at least my legs work’ and knowing who I was helping really spurred me on.

“SIA was amazing throughout – always there for a chat or a few tips, and the staff were so reassuring that it made everything so much easier. They really took my motivation to heart – and it wasn’t just about the money, but about helping me to achieve something special. They really did help me through the blood, sweat and tears, and I am so glad that I got to take part in the event and give something back to SIA.” Asked what one piece of advice she would have for anyone thinking of taking on a challenge, Lorraine said: “Just go for it! I showed myself that you can do anything if you put your mind to it. You will be amazed at how willing people are to support you. I reconnected with people I haven’t spoken to in years, and the messages of support, offers of sponsorship and the warmth I was shown helped restore my faith in people. It reminded me how loved my brother was, and I can honestly say that running the London Marathon for SIA this year was the best thing I have ever done!”

➜ G ood luck and thank you to our Manchester and Royal Parks half marathon

runners! We’d also like to say thank you to the sensational 17 – our fantastic runners and wheelers who completed this year’s Berlin Marathon for SIA! Updates from the event will be appear in the next edition of FORWARD. If you can’t wait that long, visit www.spinal.co.uk and search ‘Berlin’ for the full report.

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NEWS: CORPORATE SUPPORT

WORKING TOGETHER Find out why Thompsons Solicitors supports SIA and how the firm helps SCI people going through a compensation claim. aking a compensation claim after an SCI can often be the first step towards regaining independence and getting life back on track.

SIA members may already be aware of Thompsons Solicitors and its work with SCI people. The firm has been working with only injured people (never acting for insurance companies) for the nearly 100 years it has existed.

Being a specialist firm and working for trade union members since it started, has meant that the firm has led the field and run many of the cases that have made the law. Its history of huge litigation experience on behalf of thousands of injured people, combined with its longstanding support for SIA, means Thompsons Solicitors knows the importance of focusing on ensuring SCI people receive the specialist care, treatment, rehabilitation and support they need to live fulfilled lives.

Early interim payments and compensation that will help cover the costs of housing, transportation and rehabilitation needs can

M

provide practical help for clients but they can also give a sense of justice.

ACCREDITED PARTNERSHIP

Every year, SIA releases a directory of legal firms that meet its stringent criteria and have a proven record of successfully supporting SCI people.

Thompsons Solicitors features in SIA’s directory in nearly every UK region. It’s also the only law firm currently listed for Northern Ireland.

Samantha Hemsley, National Head of the Serious Injury Team at Thompsons Solicitors, says: “We’re extremely proud to have an accredited partnership with SIA, and of our history of helping those living with an SCI to get the financial independence they need.

“Living with an SCI is difficult enough and we don’t believe people should have the extra worry of how to finance rehabilitation or any home or transport changes they may need, especially if they’re unable to work.”

Thompsons Solicitors has successfully supported thousands of people, of all ages and circumstances, through SCI compensation claims.

The firm has SCI specialists around the UK who undergo regular training and development in this niche area of law, acting quickly to secure the maximum amount of compensation for clients. As the firm works alongside a network of charities and organisations such as SIA, its solicitors are also able to signpost people to specialists who can provide additional advice and support to aid recovery, and help those injured to continue living as independently as possible.

Generally, an individual has three years from the date of their injury, or when they become aware of their injury, to start a compensation claim – though there are exceptions. This is why Thompsons Solicitors stresses the importance of seeking legal, as well as medical, advice as soon as possible.

CORISANDE’S STORY

While working part-time at a local shop to help fund her degree, a roll cage fell on Corisande’s back. The 21-year-old sustained a complete SCI. An interim payment secured by Thompsons Solicitors allowed Corisande to move into a property closer to her family that was fully adapted to meet her needs. She returned to university on a part-time basis 18 months later.

For more information about Thompsons Solicitors visit www.thompsons.law or call 0800 0 224 224.

FORWARD | OCTOBER 2018

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NEWS: VOLUNTEERING

MEET OUR NEW VOLUNTEERS We are committed to supporting as many SCI people as possible and, due to the demand for our Peer Support service, we have had to expand our team of Peer Support Volunteers. t the end of 2017 and up until April this year, we ran a recruitment drive to take on more Peer Support Volunteers to assist our Peer Support Officers. We specifically targeted the East Midlands, London, South Coast, Yorkshire, Wales, the East of England and the North West.

Following on from the success of the recruitment drive I’m delighted to introduce you to our new team members.

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JEN SIMS HR & VOLUNTEER CO-ORDINATOR E: J.SIMS@SPINAL.CO.UK

MEET YOUR NEW PEER SUPPORT VOLUNTEERS

Jo – assisting Peer Support Officer for the North West, Gary Dawson “I am excited to be able to share my personal experiences with others who might benefit from the knowledge and skills that I have acquired in the three-and-a-half years since my SCI. I feel strongly that I should put my SCI experiences to good use. No two experiences are the same but talking about your own can really help. My aim is to return to employment in the future and I think volunteering will be a great indicator of my physical ability and will help stimulate my mind. Volunteering with the Peer Support team will help others, in addition to enabling me to develop my own skills. It will give me an insight as to what working with an SCI will look like on a dayto-day basis. I lead an active life and have two children who keep me very busy, and I look forward to joining SIA as a volunteer!”

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Will – assisting Peer Support Officer for London, Lady-Marie Dawson-Malcolm

“Before my injury I worked in a commercial productions company with aspirations of becoming a film director. Since my accident in 2008, I have had to make many adjustments to my life but I am still the same person with the same positive energy. It has been ten years since my accident, so I feel I have enough life experience to provide relevant insight and useful information about the situation.

Being able to assist newly-injured people holds so much value. I’m still thankful to SIA’s staff and volunteers who visited me at the Stanmore SCI Centre when I was first coming to terms with my injury.”

John – assisting Peer Support Officer for the East of England, Kevin Ogilvie

“My SCI occurred ten years ago and, thanks to the support of the Stanmore SCI Centre and SIA, I have learnt how to have a meaningful and confident life with my family and friends. I am a retired electrical design engineer, which was enforced due to my disability. Initially, I thought my day-to-day life would be long and boring. However, this is far from the case, as each day is a positive experience, whether that is taking the dog for a walk on my mobility scooter, going for a drive or going on holiday – including flying to foreign climes. I am naturally a positive person and I have learnt to use this to good effect, not just for myself but also to help my wife and family adjust to the change of lifestyle my disability has brought us. I look forward to sharing my experiences and

NEWS: VOLUNTEERING lifestyle with others. To be able to encourage and offer support gives me a chance to repay all the help I have received.”

overcome obstacles, and help people feel happy and positive about their future.”

Receiving support from someone who has first-hand experience of dealing with the same challenges helps improve an individual’s confidence and self-esteem.

It can help people overcome perceived barriers to living a fulfilled life after injury.

By sharing their experiences and supporting others as they come to terms with their injuries, our Peer Support Volunteers can have a significant impact on how they rebuild their lives.

I look forward to updating you on how our new recruits get on and our progress recruiting for Yorkshire, Wales and the South Coast!

Christmas volunteers Marzena – assisting Peer Support Officer for the East Midlands, Chris Fitzjohn

“I am a sociable person, a very good listener and feel able to share my experiences of living with an SCI with others. I sustained my injury in 2005 after a road traffic accident.

Despite this, I lead a busy life. I play wheelchair tennis, badminton, basketball, archery, shooting and water sports. I chose to volunteer for SIA as I want to help others

Do you enjoy talking to people?

Would you like to help raise money for a national charity that relies on fundraising?

As you will have already read on page 13, we’re looking for festive volunteers who can help with our Christmas bucket collections. If you’re based in the London area and can spare a few hours in December, get in touch with either myself or Lauren Theodosi (l.theodosi@spinal.co.uk).

FORWARD | OCTOBER 2018

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HEALTH: XXXXX

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OCTOBER 2018 | FORWARD

HEALTH SECTION

HEALTH

DO YOU HAVE A QUESTION FOR OUR ADVICE LINE? CONTACT US ON FREEPHONE 0800 980 0501.

AGEING | URINARY HEALTH | PAIN MANAGEMENT

SCI

RESEARCH HEALTH MATTERS

Turn to page 26 for news on the latest research into catheterassociated urinary tract infections.

FORWARD | OCTOBER 2018

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HEALTH: AGEING

TO PUSH OR NOT TO PUSH?

When Martin Duffy was advised that he should transition from a manual to a powered wheelchair in order to preserve his mobility, he was hesitant and instead threw himself into exercise and looked at alternative therapies to improve his health. But the time has come to make the change and Martin reveals how his body has made the decision for him.

MARTIN DUFFY – SIA MEMBER his may seem like a daft question to ask someone with an SCI: “What is health to you?” Here’s another one: “What is independence to you?”

After more than 43-years paraplegic (T12), I thought I knew the answers to those questions but, once again, the universe has different plans for my future.

Yes, here comes another surprise: finally admitting I’m struggling – it’s time to get a powered wheelchair. Yikes! Four decades of rolling around the world in a manual wheelchair has taken its toll. My body is knackered; arthritic and with painful shoulders, hips, hands and spine. They’re all giving up. I’m struggling with transfers and vanishing energy levels. It’s time to do something I’ve been putting off for years.

T

AGEING SUCKS

I’ve also had ten bone fractures in the last decade since turning 50. Most are from daft sporting accidents – crashing my handcycle and breaking an ankle, fracturing my femur taking part in CrossFit, etc.

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Then there’s just the classic falling out of my chair in the kitchen while trying to pull up my sweat pants. Don’t ask. And no I wasn’t legless, so to speak.

My days of partying are long gone. I haven’t touched alcohol for decades. I don’t smoke. I exercise daily and I eat a plant-based vegan diet. Oh, and I don’t take any prescription drugs either. Come to think of it, I haven’t a clue who my GP is. I never go to the doctor. I believe I’m responsible for my health, not a doctor.

Each fracture took an average of a year to heal and drained my energy. I’m beginning to appreciate why elderly people who fall and fracture go downhill so fast afterwards.

Oh wait a minute. That’s now me. I’ll be 62 in a couple of months. Yet, I still think I’m 25. Just my body doesn’t agree. It’s sending me a different signal, usually painrelated, to get my attention. My body isn’t just talking to me, it’s screaming: “Back off dummy, get a powered wheelchair.” It’s a decision I’ve been resisting and putting off for a good 15 years or more.

HOW DID I GET HERE?

My shoulders packed up around the three-decade mark, in 2004. It was the result of pushing myself hard and not allowing anyone to help me for 30 years.

My consultant at the Salisbury SCI Centre used the dreaded ‘but’ word. That’s always the clue when bad news is coming.

He said: “You’re not old, Martin, but your injury is. Your shoulders are wearing out. You can’t go on like this. Give up work and give up riding your handcycle, especially up hills. Stop exercising and get a powered wheelchair.”

He also said something about taking a shedload of painkillers and gave me a

very unpleasant steroid injection in my right shoulder.

As if that wasn’t bad enough, here’s what my consultant said next: “Martin, if you don’t take my advice and stop hammering your body, you’ll lose the use of your hands and arms, resulting in tetraplegia.”

That really scared me. However, the idea of quitting, of giving up, just wasn’t on my radar.

Not to mention there’s no way I’m taking a shedload of drugs every day. Nonetheless, I did heed the warning signs, albeit not quite in the way my doctor intended.

I thanked him for his advice and never went back. Well, apart from the usual check-up and kidney ultrasound (so much easier than the old intravenous pyelograms we used to have).

Instead, I went to a gym and started to exercise. Yes, the very thing I was told not to do. My thinking was simple. I figured if my shoulders had eroded, maybe if I build up my shoulder muscles they would support my damaged joints. I had no idea if it would work, but it was, in my view, a much better option than poisoning my body with painkillers.

This was the beginning of what I call my self-healing journey.

IT’S JUST A PICTURE

While I didn’t want to agree with my consultant or accept his medical advice, his words were definitely a wake-up call for me. He did me a favour but, once I recovered from the initial shock of what he told me, I decided that his picture of how he saw me ageing with an SCI and rolling around in a powered chair, wasn’t the picture I had in mind.

HEALTH: AGEING Instead, I visualised a healthy Martin.

I made a commitment to myself to learn as much as I could about maintaining my health and independence as I age with SCI.

DELAYING THE INEVITABLE

I decided to quit work and focus on my health. When people ask me what I do for a living these days, I tell them that my fulltime job is staying healthy.

I set four clear goals to enable me to maintain my mobility and independence (notice they didn’t include a powered chair at the time).

• Keep my strength up – for wheelchair transfers, etc.

• Keep my weight down – so I have less bulk to shift around.

• Stop food poisoning – is what I’m eating causing my health problems?

• Collect my telegram from the King – I intend to live long and healthy.

I say no to drugs. I set out to identify the cause of my problems and not solely focus on the symptoms, which is exactly what prescribing and taking drugs is all about. I figured if drugs worked, we wouldn’t need to take them for chronic conditions.

When people ask me what I do for a living these days, I tell them that my full-time job is staying healthy.

I also realised how damaging the side effects of long-term drug use are. I prefer orthomolecular medicine – using high doses of vitamins to treat pain and improve health.

My other discovery was that aside from the wear and tear to my joints from over use, the other major cause of illness as we age is inflammation. It’s suggested that the biggest cause of inflammation and sickness in our bodies is the food we eat.

I’m a great believer that diet and exercise are the cornerstones for good health.

The other three for me are meditation, love and laughter. In other words, a stressfree lifestyle.

I often say: “If it isn’t fun, don’t do it.”

Transitioning from a manual wheelchair to a powered wheelchair is definitely

not my idea of fun. It’s stressful and the bureaucracy and expense is very challenging for me. I live in a small flat where you can’t swing a cat. I just don’t see a powered chair fitting in the loo.

BEGINNING THE TRANSITION

I’ve begun the process by meeting Ian Laker at GBL Wheelchairs. Ian is my wheelchair expert. I’ve been buying my manual chairs from him for decades. Now he’s helping me transition to a powered chair. Ian recommended a Quickie Salsa M2 from Sunrise Medical. Looks like I’ve got to come up with £6,000 to £9,000.

Price is an issue, so I’m shopping around.

I also got great service from Tara at Solent Mobility in Lee-on-the-Solent. Tara had a Salsa M2 in stock and allowed me to take it for a spin by the water. I spent a fun half-hour trying to figure out how to make it go faster.

I’ve also approached Hampshire wheelchair service to explore how they can help and if there’s a voucher in my future. How will I get on? Watch this space.

Changing to a powered chair also means giving up my car and getting a wheelchairaccessible van. More on that in part two.

The ageing journey continues …

FORWARD | OCTOBER 2018

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HEALTH: URINARY HEALTH

CARE OF THE BLADDER AND KIDNEYS IN LATER LIFE The correct and consistent management of your bladder is an essential part of life after SCI. It should become second nature, but no matter how meticulous you are, there will be complications such as urinary tract infections (UTIs) and other kidney issues.

JOY SINCLAIR – AGEING WELL CONSULTANT

THE BLADDER

The ageing bladder loses a degree of tone and elasticity, which can interfere with its ability to store urine. There is an increased risk of UTIs, in part because you may experience residual urine (where the bladder does not fully empty). UTIs are a common cause of hospital admission with the SCI population and this can disrupt both your work and social life. Chronic UTIs can lead to more serious complications such as the formation of bladder and kidney stones and, in extreme cases, kidney failure. Reducing the number of UTIs you get by finding and treating the root cause should be a priority.

HOW TO KEEP YOUR BLADDER HEALTHY

• An effective bladder management routine: establishing and maintaining a routine that works for you will help to prevent infections and other complications and help your life run smoothly.

• Cleanliness and correct technique: if you think you have developed bad habits you can get in touch with your SCI Centre for advice, or read SIA’s Bladder Management factsheet. It is important that you ask your carers and family members to practice an effective cleanliness regime around you.

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•F ood and supplements: certain foods help to keep your bladder healthy including natural yogurt, celery, watermelon, parsley, garlic, asparagus, cucumber, cranberries, blueberries and citrus fruit (especially if you are aiming to keep your urine slightly acidic to restrict the growth of bacteria).

• Cranberry juice/tablets: there are strong feelings for and against the use of cranberry in the prevention and treatment of UTIs. NICE (National Institute for Health and Care Excellence) has recently published its findings and concluded: “There is not enough good evidence to recommend it.” This issue has become very personal to some individuals, with reports that using cranberry, in either tablet form or juice, has been beneficial, especially when the early signs of an infection occur.

• Vitamin C: found naturally in food and in supplements, vitamin C makes the urine slightly more acidic, which helps prevent infections.

• Probiotics: these are live microorganisms, for which it is claimed there are various health benefits, including boosting the immune system. They are added to foods such as yoghurt.

• D-Mannose: this is a naturally-occurring sugar that has become popular within the SCI community as a means to help prevent bladder infections. Again, the jury is very much out in terms of its effectiveness. There is no official scientific evidence to prove it has any benefit.

• Echinacea: this herb is taken to prevent colds over the winter because of its ability to increase the number of white blood cells produced by the body, thereby helping to fight infection.

• Fluid intake: the recommendation for people living with SCI is two-to-three litres of water per day, as this will flush out the bladder and kidneys. Other drinks might include juices, but you should be aware that concentrated juice contains a lot of sugar, which causes the kidneys to work hard. Also, too much tea, coffee or alcohol can act as an irritant. Everyone has individual needs, so you should seek advice if you are unsure as to what is a healthy amount of fluid for you.

• Exercise: you should exercise as best you can and as regularly as you can.

Regular use of a standing frame has many benefits, including aiding kidney function, helping to maintain blood pressure and improving circulation.

HEALTH: URINARY HEALTH

HOW TO HELP KEEP THE KIDNEYS HEALTHY DIET

• Avoid too much red meat and foods that are high in fat and salt.

• Include plenty of green vegetables.

• Maintain a healthy and steady weight.

LIFESTYLE

• Avoid smoking.

• Be aware of certain medications such as painkillers and heartburn drugs, which make the kidneys work hard.

Long-term unsupervised use can be harmful, so check with your GP if you are buying over-the-counter drugs for pain and heartburn.

• Have your blood pressure checked to see if you need monitoring regularly.

WHAT ARE THE RISK FACTORS FOR DEVELOPING KIDNEY STONES?

It also helps to open internal cavities, giving internal organs more space and reduces the severity of osteoporosis.

• Immune system: a healthy immune system helps to protect you against infections. Over-use of antibiotics can contribute to the destruction of good bacteria in the gut and this can weaken your immune system. Make sure your diet contains enough immune-boosting nutrients, such as garlic, vitamins A and C and the mineral zinc.

• Health check-ups: these should take place preferably at your SCI Centre or a district general hospital. Regular urological check-ups will help to detect the early formation of bladder stones and early signs of bladder cancer. To reduce your risk of bladder stones you must drink sufficient fluids and keep your urine slightly acidic.

• Positive mindset: recognising when your routine is no longer fit for purpose, you will need to change the way you manage your bladder.

• Vigilance: report any changes to your GP or spinal consultant, within weeks rather than months.

Before you add supplements to your diet, it would be wise to seek advice from your GP or a dietitian.

ANTIBIOTICS

The overuse of antibiotics is now a cause of great concern and some people are keen to reduce the number of times they use them to treat UTIs. The more times you take antibiotics, the more at risk you are of building up resistance to them, thereby encouraging more infections to develop. It can become a vicious cycle. You can ask your GP to provide you with a ‘back up’ course of antibiotics, especially if you are susceptible to frequent infections.

URINE

Your urine should be pale and almost colourless and odourless. If you are advised to keep your urine slightly acidic, this can be achieved by eating citrus fruit. If it turns a dark colour then you are probably not drinking enough. Report any major changes to your GP.

THE KIDNEYS

It is easy to forget the importance of your kidneys, but they work continuously to filter the blood that passes through them to rid the body of waste products, producing urine. The kidneys’ other functions include helping to regulate blood pressure and helping to balance the body’s fluid levels.

References Smith, J. and James, K. (2013). Eat Well, Live Well with Spinal Cord Injury. PVA Publications.

Further reading and information • SIA’s Advice Line, Message Board and Bladder Management factsheet.

• Use reliable websites, such as Patient UK and NHS Choices.

• Not drinking enough water.

• Chronic bladder infections.

• Some people produce both bladder and kidney stones more naturally.

• Certain chronic medical conditions.

• Not attending regular health check-ups.

REFLUX

Reflux occurs when urine flows back up to the kidneys – this can dramatically increase the risk of UTIs, causing swelling of the abdomen, nausea and rising blood pressure. It is important not to overfill the bladder and to ensure it is emptied properly. Chronic untreated reflux can cause infection to spread to your kidneys.

BEING VIGILANT

• Report any changes, especially if you see blood in your urine.

• Have regular health check-ups, including urodynamic tests.

THE BIGGER PICTURE

A healthy and well-functioning urinary system not only gives peace of mind, but also improves self-esteem, gives you confidence in the workplace and allows you to conduct your social life without fear of accidents.

SUPPORT

Build good relationships with staff at your SCI Centre, a neurology consultant, community nurses, continence specialist nurses (employed by your GP surgery) and a nutritionist who understands the needs of SCI people.

FORWARD | OCTOBER 2018

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FORWARD | OCTOBER 2018

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HEALTH: SCI RESEARCH

SCI RESEARCH Read about the latest research study into an antimicrobial urinary catheter that prevents infection and blockage.

DR KATIE BELFIELD AND PROFESSOR ROGER BAYSTON, UNIVERSITY OF NOTTINGHAM MR RICHARD PARKINSON, NOTTINGHAM UNIVERSITY HOSPITALS NHS TRUST epeated infections and blockages are two major issues that affect indwelling urinary catheter users. For many SCI people who rely on a urinary catheter for their bladder management, there is no technology available to help prevent infections and blockages. We are pleased to share research from the University of Nottingham, which aims to reduce catheter-associated urinary tract infections (CAUTIs) and blockages in those who use an indwelling urinary catheter for more than 28 days.

We have developed a urinary catheter embedded with three antimicrobials – bacteria-killing drugs. The antimicrobials in the catheter material are able to continually replace those on the surface that are rinsed away by urine flow. This gives the catheter up to 12 weeks of protection, the maximum lifetime before the catheter is removed or replaced. The antimicrobials are also embedded into the balloon so that the whole catheter is protected. As the antimicrobials

R

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are in the catheter, they exist at a high concentration on the catheter surface where the bacteria are. This means oral antibiotics are less likely to be needed. This cuts the risk of side effects from oral antibiotics and the risk of bacteria becoming resistant to antibiotics.

By using a combination of three antimicrobials in the catheter, bacteria are unlikely to become resistant to the antimicrobials in the catheter, as to do so would require multiple simultaneous genetic mutations. The antimicrobial catheter can be made in any diameter and in female and standard lengths.

The National Institute of Health Research (NIHR) provided funding to carry out studies of our catheter in the laboratory and in patients.

In laboratory models that replicate conditions in the bladder, our antimicrobial catheter kills the major bacteria that cause CAUTI for 12 weeks. This includes bacteria that have become resistant to antibiotics and bacteria that cause mineral deposits on the catheter surface. By killing the bacteria responsible for mineralisation, our catheter prevented blockages in the laboratory models.

The laboratory studies were encouraging.

The next step was to show that this catheter is safe and well-liked by catheter users, before rolling it out to bigger trials and for use by the NHS. After approval from an NHS Research Ethics Committee, 30 participants volunteered to have the antimicrobial urinary catheter for their normal duration of catheterisation. The study verified that the

antimicrobial urinary catheter was safe and well-liked by most participants. We analysed the antimicrobial catheters in the laboratory after removal from the volunteers and compared them to their original, standard catheter. There were significantly fewer bacteria on the antimicrobial urinary catheters.

We are now planning a larger clinical trial in the UK to find out if this antimicrobial urinary catheter prevents symptomatic infection in long-term catheter users, prevents catheter blockages, and reduces antimicrobial resistance development. Based on studies in the laboratory we expect that it will, but we need the help of long-term catheter users to confirm this. Urethral or suprapubic indwelling urinary catheter users will be invited to join the trial. We are working with SIA to encourage the participation of SCI Centres around the country. We hope that by working together on research we can deliver a catheter for long-term use to the NHS that improves the quality of life of those who suffer from repeated catheter infections and blockages. If interested, watch this space for when trial recruitment begins.

This is independent research funded

by NIHR under its Invention for Innovation (i4i) Programme (Grant Reference Number II-LA-0214-20007). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health. Further information can be found at www.nihr.ac.uk

HEALTH: XXXXX

FORWARD | OCTOBER 2018

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HEALTH: WALKERS

SIA HEALTHCARE Feedback from our 2018 SIA Healthcare customer satisfaction survey…

92% 93%

would recommend the service to other people

of service users are either satisfied/very and extremely satisfied with the service

92%

find their dedicated customer advisor helpful/ very and extremely helpful

ARACHNOIDITIS – SURVIVING THE PAIN Pain management is an ongoing issue for many people living with SCI. For Dinara Farina, she has had to develop coping strategies to help her manage the day-to-day challenges of living with arachnoiditis.

DINARA FARINA COMMUNITY FUNDRAISER sustained an SCI in October 2012 resulting from an epidural during childbirth. In the years following, I started to develop neuropathic pain. It felt like bolts of lightning passing through my body. I also had pins and needles, numbness, wrist pain, blocked ears and occasional frontal headaches. To this day, the pain is very unpredictable.

It comes and goes randomly across my body without any provocation.

As the symptoms progressed, it became clear that there was something going on and that I wasn’t imagining it all in my head. I received many diagnoses for these symptoms – hypochondria, panic attacks, stress and fibromyalgia. In the end, I had to see a private healthcare professional to get an accurate diagnosis. I saw a leading neurosurgeon in Oxford, who in January this year diagnosed me with arachnoiditis – a pain disorder caused by inflammation of the arachnoid, which is a layer of membrane surrounding spinal cord nerves.

There seems to be little understanding of the condition amongst healthcare

I

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communities and there is no known cure.

My GP is fantastic and recommended I try Pilates and work on my mental wellbeing to try to stay positive. She has also referred me to a pain clinic upon the advice of my neurosurgeon.

Many people with arachnoiditis follow the survival protocol developed by Dr Tennant, an American pain management physician who has devoted nearly 40 years to understanding this condition. I manage my symptoms of arachnoiditis by following advice in Dr Tennant’s survival protocol and adopting a holistic approach to life.

I do the following to manage my symptoms: •S leep for at least eight hours a night and with guided meditation • Walk regularly and do spinal exercises to keep the spinal fluid moving • Swim and do gentle stretches • Refrain from lifting or bending • Wear a lot of silver and copper jewellery to eliminate the build-up of electricity • Take pain medication and natural supplements such as turmeric and serrapeptase • Drink plenty of water • Follow an anti-inflammatory diet – my doctor described arachnoiditis as neuroinflammation, so keeping inflammation down is key

94%

find SIA Healthcare reliable/ very and extremely reliable

“SIA Healthcare is a breath of fresh air.

Having a monthly phone call, 100% reliable service and friendly customer advisors makes a huge difference.

Thank you.”

“The service is excellent. All of your advisors are very pleasant and helpful.

I couldn’t be more satisfied with the service.”

“I would just like to comment on how helpful, reliable and customer-friendly the staff are. Since using this service my condition has been much more manageable. It has given me a lease of confidence, thank you.”

Get in touch today to find out more about SIA Healthcare: Visit www.spinal.co.uk/how-wehelp/sia-healthcare Call 0800 023 8841 Email enquiries@siahealthcare.com

• Talk to my body for healing purposes • Practise deep breathing • Walk barefoot for at least ten minutes a day as a grounding exercise • Keep myself mentally active.

I have no choice but to live with arachnoiditis and manage it best I can.

I am the administrator of a Facebook group called Arachnoiditis from Childbirth Epidural/Spinal Anaesthesia. It has more than 100 members and we support each other around the world. There is little awareness in the UK about arachnoiditis, but I hope to increase understanding of it and work with doctors and clinicians to help improve the quality of life of those living with the condition around the world.

HEALTH: ADVERTORIAL

MOVING WITH THE TIMES Active Assistance is committed to meeting the individual care needs of its clients and promoting individuals’ choices and independence.

To achieve this, the complex care agency works with its clients to embrace new technology, innovation and collaborative working.

CLAIRE WESSIER – CARE SERVICE MANAGER ELIZABETH ATHERTON – CLINICAL IMPROVEMENT AND DEVELOPMENT MANAGER WWW.ACTIVEASSISTANCE.COM ne of our clients is currently trialling a new turning system for managing their pressure relief, maintaining their skin integrity and optimising safer peoplehandling procedures. One of our Care Service Managers has worked in collaboration with the client and occupational therapy to implement this new piece of equipment.

The system comprises of a frame that sits on top of a standard or profiling bed. All the functions of a profiling bed can be used with this frame. It reduces the workload of the PA and the client when they are moving on the bed, and is particularly useful for clients who have no ability to assist their PAs with their movement.

The benefits of using a system such as this are that it reduces the risk of musculoskeletal injuries to the client and the PA. As the system takes on

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the workload of the movement, it can be used safely with one PA. With the correct training, a very simple piece of equipment such as this can be used by both PAs and family members, and can make people handling a safer and more pleasurable experience.

A simple turning system can help to maintain skin integrity due to the strong cotton fibre sheets that are used in such systems. Pure cotton is extremely strong, so not only is it the best material to use, it doesn’t irritate the skin, potentially causing skin breakdown; perfect for those clients with ongoing dermatological conditions.

This particular model also has an integral slide sheet. When a client naturally slides down the bed during bed rest, the cotton top sheet moves with the body across the slide sheet, therefore reducing the risk of shearing to the client’s skin.

As there is a permanent integral slide sheet, there is no longer the need for the PA to insert or remove a slide sheet, so it is much less invasive for the client.

There is far less contact between the PA and client, meaning that there is a reduction in pulling and straining on the

client’s limbs and skin; particularly useful for our SCI clients who live with pain.

Systems such as these turn the client, slide them back up the bed when gravity has repositioned them and slide the client across the bed to bring them closer to the PA for sling insertion or personal care, all with minimal PA support and reduced contact.

SUPPORTING CLIENTS AND PAs

The feedback received by the Care Service Manager from the client has been very positive. As the client has reduced mobility, he was unable to assist with his moving and handling and his PAs were struggling to provide a safe, effective handling procedure. He was confined to either his bed or to the wheelchair with little option to be able to pressure relieve or be transferred to bed during the day. The client also has skin allergies and was unable to use a standard slide sheet without his skin breaking down. A turning system has allowed the client to be more in control of his movement and he has regained the ability to be given a choice and therefore a level of independence in deciding his daily routine. The cotton sheet stays under the client while in bed with no risk to the client’s skin and it can be comfortably slept on.

The use of a turning system has also had a positive impact on the PA’s health and working conditions alike. They like that it can be safely and simply operated by one PA. It has greatly reduced the strain that they had previously felt when conducting manual handling procedures, as there is no longer a need to stoop, reach, pull or lift, as the system supports the workload with only guidance from the PA. We are currently providing ongoing support and training for PAs working with innovative systems such as these, as part of Active Assistance’s dedication in providing a safe working environment for our staff and our ongoing dedication in supporting a culture of independence and enabling person-centred care for our clients.

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FORWARD FOCUS: FASHION

INCLUSIVE FASHION Clothing – fashionable clothing in particular – can be something of a holy grail for disabled consumers. Over the next few pages we look at the retail landscape and representation of disabled people in advertising, and bring you fashion tips and advice from SCI people. income, why are businesses not meeting their consumer needs?

CHANGING TRENDS

hen I set out to write this article, I envisaged providing readers with a long list of shops and online outlets that offered a wide range of accessible and, most importantly, fashionable clothing lines.

You may recall in the June issue of e-clips (SIA’s monthly e-newsletter) that I asked subscribers to share their fashion tips and advice with me, which I would then share in this feature. While several people replied to say that they were glad we were broaching this elusive subject, I didn’t get the sudden influx of information that I was hoping for. Having done my own research, I can understand why – on the whole, retailers are dragging their heels when it comes to meeting the needs and wants of diverse consumer audiences.

This is a major fashion faux pas in itself if the statistics are anything to go by.

According to the Government there are more than 11 million disabled people living in the UK. The spending power of disabled people and their families, often referred to as the ‘purple pound’, is estimated to be worth a huge £249bn a year. So, if disabled people collectively have access to such a substantial amount of disposable

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Mama Cax modelled for ASOS in 2018

Photo: ASOS

BREDA DUGGAN PUBLICATIONS MANAGER

The lack of accessible, fashionable and affordable clothing is not just a British problem.

Stephanie Thomas is an American fashion blogger, who founded www.cur8able.com to share her experiences of dressing with a disability. During an insightful TEDx Talk called Fashion Styling for People with Disabilities, Stephanie alarmingly pointed out: “We have more clothing in stores for dogs than we do for people with disabilities.”

However, we are slowly seeing a change in trend with premium and high street

brands featuring disabled models in their advertising campaigns and on runways.

In 2016, Tommy Hilfiger was the first designer to showcase an adaptive clothing line for children with disabilities. The line was expanded to include clothing for adults and this year, Tommy Adaptive was unveiled – a stylish collection of accessible clothing for children and adults with disabilities. The garments were designed with magnetic buttons, Velcro closures, one-handed zips, adjustable hems, sideseam openings and adjustable waists.

A company spokesperson said: “Tommy Adaptive’s mission is to be inclusive and empower people of all abilities to express

FORWARD FOCUS: FASHION GB Paralympic hopeful Chloe Ball-Hopkins (front) collaborated with ASOS this year

Photo: ASOS

themselves through fashion.” The clothing is due to go on sale in the UK next year.

In 2017, American designer Derek Lam featured 18 models with cerebral palsy as part of his Design for Disability fashion show in New York. He worked with The Cerebral Palsy Foundation and students from three of the top fashion design institutes to create a stylish collection suitable for disabled people.

Talking about the inspiration behind the collection, he said: “We are talking about very serious things like diversity, gender and empowerment — but I feel like the conversation never really comes up about a large segment of the population, which is those with disabilities. I was quite taken aback that I didn’t know more.”

Closer to home, our high street retailers are starting to make progress with the representation of disabled models in advertising. This year, River Island celebrated its 30th anniversary and launched its campaign, #LabelsAreForClothes, to celebrate individuality. Soon after, the retailer collaborated with anti-bullying charity, Ditch the Label, to launch a kids advertising campaign featuring clothing modelled by six children with different disabilities.

Speaking about #LabelsAreForClothes, River Island said: “The models were selected for the campaign to reflect the diversity of our customers and celebrate an ethos that rings as true in society as it does our wardrobes, that being different is more than OK.” One of the leading online retailers, ASOS, has also taken steps to improve its product offering for people with disabilities. With the British festival season in mind, this summer ASOS released a tie-dye waterproof jumpsuit, which was designed specifically for wheelchair users.

GB Paralympic hopeful Chloe BallHopkins collaborated with ASOS to design the jumpsuit and modelled the fashionforward garment on the company’s site.

The one-piece features a longer hem at the back, a soft jersey inner lining, a front pocket and a mid-section zip to separate

the jacket and trousers. Speaking to the BBC at the time of launch, Chloe said: “It was just literally those little tiny details that make the difference to people like me. We don’t want to have to look like we’re just doing practicality, we still want to be able to look fashionable.”

ASOS also made headlines this year when the company featured model and blogger Mama Cax in its activewear campaign. Mama was diagnosed with

cancer at the age of 14, which resulted in the amputation of her right leg. The striking photos garnered widespread coverage and instigated many conversations online about the need for a greater representation of disabled models in the fashion industry.

What do you think? Share your thoughts with us and each other by starting a conversation on our Message Board under the category ‘Forward Magazine’ – www.spinal.co.uk/forums

HOT OFF THE PRESS … PURPLE TUESDAY The UK’s first dedicated accessible shopping day, ‘Purple Tuesday’, will take place on 13 November. The initiative is being led by the disability charity Purple, and high-profile chains including Argos, Asda, Sainsbury’s and Marks & Spencer, as well as online outlets, have signed up to take part. Shopping centres are also getting involved, including Bluewater in Kent and the Bullring in Birmingham. The aim of the event is to increase awareness and confidence amongst shop staff when helping disabled customers and, in turn, to make shopping a more inclusive experience for people with seen and unseen disabilities.

Retailers will train their staff ahead of the event and measures will be put in place to overcome accessibility issues that many consumers face.

If you decide to take to the high street or do a bit of online shopping on 13 November, don’t forget to share your experiences on our Message Board.

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FORWARD FOCUS: FASHION

STRIKE A POSE

Social media has transformed the way in which we receive and share information. As well as being great for getting tips and advice on anything and everything, many social media users share their experiences to promote positive self-image and inspire confidence in other people. work for me sitting down all day, especially bottoms that are comfortable without zips, or stretchy enough to get on and off with ease. But I think I’ve reached a point in my life where I know what to look for and what to avoid to ensure clothes are suitable for me to wear while I’m in my wheelchair.

Q. DO YOU HAVE ANY FAVOURITE BRANDS?

A. I love ASOS, Primark and New Look.

Q. DO YOU HAVE ANY FASHION TIPS TO SHARE?

SOPHIE BRADBURY-COX WWW.INSTAGRAM.COM/FASHIONBELLEE/ ere are two social media stars who promote positive selfimage and want to show the world that fashion and style can and should be enjoyed by everyone.

First up, meet Sophie Bradbury-Cox. Sophie has spinal muscular atrophy type three. As you will see for yourself, Sophie’s fun and bold personality takes centre stage in her imagery.

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Q. WHY DID YOU SET UP YOUR INSTAGRAM PAGE AND WHAT WAS THE INSPIRATION?

A. I set up my account because I love fashion and styling clothes in different ways. I wanted to inspire other disabled people, particularly people in wheelchairs, to feel positive about fashion and to wear whatever they want and be confident doing so.

Q. HOW EASY IS IT SHOPPING FOR OUTFITS IN TERMS OF FINDING FASHIONABLE PIECES THAT ARE COMFORTABLE?

A. I really struggle to find clothes that

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A. I would recommend people with disabilities try lots of different things.

Sometimes it can be so easy to wear the same things because they are effortless, but I often try different styles and especially those that I think might not suit me. I usually end up loving them! I tried wearing a stretchy tube midi skirt for the first time this year and now I own four of them. Also, I would recommend shopping around. I always struggle to find wide fit shoes that fit my feet, but there are quite

a few brands now incorporating wider fit shoes in their collections. Although it can be a pain trying lots of different styles, I usually find something I love in the end.

FORWARD FOCUS: FASHION

LORRAINE LOLLY MACK WWW.INSTAGRAM.COM/LORRAINELOLLYMACK/

Next up we have Lorraine Lolly Mack. When a drunk clubber fell from a balcony and landed on top of her in a nightclub, the injury resulted in an SCI at C4/5. Despite the tough times that followed during her rehabilitation, Lorraine is determined to raise awareness of SCI and live her life to the fullest – while looking her best!

Q. WHY DID YOU SET UP YOUR INSTAGRAM PAGE AND WHAT WAS THE INSPIRATION?

A. Fashion and clothing are extremely important to me and always have been.

I’ve been very fashion conscious from a young age and I worked in the beauty industry for over ten years. For me, fashion makes a big statement and I’m also a firm believer that when you look good, you feel good! When I first had my SCI, my weight increased and I went up to a size 16, but I didn’t let that stop me from wearing what I wanted. I battled with my weight for many years and three years ago I made big lifestyle changes. By doing so, I dropped four dress sizes. It was the best thing I ever did as it reduced the swelling in my joints, my mobility improved and I felt healthier all round.

Q. HOW EASY IS IT SHOPPING FOR OUTFITS IN TERMS OF FINDING FASHIONABLE PIECES THAT ARE COMFORTABLE?

A. I have a C4/5 complete SCI, so getting around some shops in a wheelchair can be challenging as the aisles can be very narrow. Some shops have steps with no ramps. In certain posh shoe shops, I’ve been known to be lifted in by the store’s security! That’s when I’m on a mission to purchase a pair of shoes that I just have to have. Accessibility should not be a privilege it should be a right.

When I was non-disabled, I didn’t really think about embellishment on clothing that could mark my skin, or seams and lengths of dresses or skirts etc. I’ve tweaked a few outfits by removing sequins from the back of dresses so that I don’t sit on them.

I can usually find what I’m looking for and I do love shopping online too. I like the fact that I can try clothes on at home and you can send them back free of charge if they’re not suitable.

Q. DO YOU HAVE ANY FAVOURITE BRANDS?

A. I have a lot of favourite brands for different occasions. I tend to shop in River Island, Topshop, Zara and H&M, as well as online via Pretty Little Thing, Missguided – too many to mention!

I like mixing high street with designer brands. It’s amazing what a designer handbag or shoes can do to a high street dress. Always try on everything! I’ve fallen in love with so many outfits but when I’ve tried them on, they look completely different.

Q. DO YOU HAVE ANY FASHION TIPS TO SHARE?

A. Whatever you wear have the confidence to rock the outfit! Don’t be shy – if you really love something just wear it. If it makes you feel good then go for it. Don’t let anyone put you in a box just because of a disability. I was horrified when I was in hospital in the early days after my SCI, when the nurses told me I would have to wear trainers, tracksuits and loose clothing now that I was in a wheelchair! What? This made me feel so depressed and I felt like I was losing my identity. I said to myself: “No way!” I wanted to wear the clothes that I wore before my injury and I had so many high heels that I just had to get back on!

THE MALE PERSPECTIVE …

Marc Cherrie shares his experiences of self-image following his injury and how by taking care of his appearance, he has also improved his outlook on life.

MARC CHERRIE SIA MEMBER Until 15 months ago, I spent four years hiding – closing curtains, not answering the door and just wanting to die. I pushed everyone away and no longer engaged with professional services, to the point that I was slowly going insane.

Then, SIA got involved with my care,

and other life-changing professionals and friends helped too.

Over time, I started to rebuild my life in a wheelchair and actually, life is jolly good. It’s not always straightforward, as a lot of us know, but it’s doable and one of the things that’s incredibly important is how I look. I’ve bought a lot of clothes in the last year and it makes me feel good.

I used to work in Westminster and tried to look the best I could. I always wore the best suits and shoes – the best of everything. When my circumstances changed, both in terms of my lifestyle and financially, I just stopped caring.

However, today it’s not unusual for someone to comment on how well I look. I think as a disabled person it’s very easy to get stuck in the quagmire of disability discrimination. The purple pound is worth billions and why shouldn’t we spend it on fashion and

dressing well? It has certainly made a difference to my life. By just taking a bit of time to make sure that I look the best I can, I feel like a greater part of society.

Skincare is another neglected area.

Luckily, I have a friend who is an antiageing consultant. My skin was in a bad way and I visited dermatologists and the GP, but no one was able to help me. My friend advised that I needed six months of gentle creams and potions, and then facials. Today, my skin is in tiptop condition. Usually, the only aspect of skincare that we focus on is pressure relief, but it’s really important to keep the face – and skin in general – well nourished too.

I’d like to thank everyone who has stuck by me and helped me become the person I am today, which is someone who is positive, with a great outlook (and wardrobe), and a long way from the person who once hid behind the curtains.

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FORWARD FOCUS: FASHION

THE BOLDER THE BETTER SIA’s Lady-Marie Dawson-Malcolm is known for her glamorous and colourcoordinated outfits, just as much as she is for her warm and kind character.

Having lived with SCI since 1992, we asked her to give us an insight into how she organises her outfits and what tips and advice she can pass on.

LADY-MARIE DAWSON-MALCOLM PEER SUPPORT OFFICER, LONDON E: L.DAWSON-MALCOLM@SPINAL.CO.UK was always interested in fashion and made sure that I looked the part when going out. In the early days following my injury, I found it very difficult to find things that I liked to wear. During my rehab in hospital, I had the fear of God put in me when I was told not to wear bras or anything too tight. I was informed that I would have to wear trainers and tracksuits in order to avoid pressure ulcers. My initial thought at the time was: “I’m finished with life.” However, I soon learnt that a life resigned to colourless and shapeless clothing void of all personality was not necessary.

I have a keen eye for designs and colour coordination. If I have an event to attend, I first think of a colour scheme. I then look at which fabric would look nice in that colour.

Then I think about what I want the outfit to look like, before going to buy the fabric. I am fortunate to have a fantastic seamstress who makes my clothes for me. It’s great because she can literally make anything to order. For example, if I see a lovely jacket in the shop but the skirt or trousers are inappropriate, I would not let that deter me. I’d purchase the jacket and take it to my local haberdasher to match the material as close to the jacket as possible. My seamstress would then make the skirt to match.

I buy most of my clothes on the internet, but I often buy jackets from Next or JD Williams. I then trawl the internet to

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find shoes and handbags to match. I discovered a website called Shoes of Prey, which allows you to design your own shoes in the colour and size you need. If on arrival the shoes do not fit you, you can return them for a refund or to be resized.

Over the years, I have discovered different tips and tricks to make clothes more comfortable. For example, I would recommend buying clothes with zips placed on the side or on the front. You should always try to avoid sitting on zips for a long time as they can cause skin damage. It is always best to wear straight skirts if they’re long. If you wear flared skirts/dresses, they can get caught in the wheels of your chair. To overcome this problem, tie a knot in the centre at the tail on the back of the dress/skirt. No one will be able to see it and it will stop excess fabric from floating around.

As a female wheelchair user, looking good makes you feel good. I find that when you express your personality through clothing, people are drawn to you, the person, and they do not see your chair. It is especially lovely when people compliment

you on how lovely you look, particularly when you wear bold colours. There is an assumption from some people in the public that wheelchair users can’t look just as good as non-disabled people. I take great pleasure in challenging that. It’s important to take pride in your appearance because the ‘beautiful you’ on the inside will shine through your appearance and build your confidence when you face the world.

FORWARD FOCUS: FASHION

PREPARED FOR ALL WEATHERS Sam Neale has always enjoyed being outdoors, come rain or shine, but would become frustrated when heavy downpours and soaking wet clothing put an end to his fun. So, he decided to do something about it and designed his very own waterproof trousers.

SAM NEALE SIA MEMBER t's typical in Britain to plan an outing with friends and family, only for it to be put on hold or not enjoyed as much as it could be due to bad weather. This especially applies to people who live with SCI, as sitting in wet trousers all day is not ideal for general comfort, let alone skin issues.

This has happened to me many times.

On one particular occasion, I went on a ten-minute roll to the shops but got caught in the rain and was soaked by the time I got home. When things like this happen, I have to either sit around trying to dry out or get out of the chair and onto my bed to change my trousers. This is not an ideal situation and if I was out and far from home it would put a real downer on my day.

On a separate occasion, I went to visit friends and the parking situation was not ideal, so I had to park down the road. The weather was awful and, even though I only had to travel two minutes from the car, I was drenched by the time I got to their house.

As I enjoy the great outdoors, I’m determined to not let this stop me from going out but I still want to keep my dignity and wear something that I feel happy and comfortable wearing. I do not want to have to put up with or feel embarrassed about my appearance.

This is how the idea of Fast Fit Clothing came about; I did not want to miss out on events or have to stay at home because of the rain, etc. Using my engineering background and my mum's sewing skills, we came up with a prototype of waterproof trousers. It was then time to choose the material, so I bought samples to test. When I selected the winning fabric, I purchased a few metres of material.

All I needed to do now was find a seamstress to make them for me.

After ringing around a few places and not having much luck, I started to give up on the idea until I came across a small and local seamstress. We arranged a meeting and together decided there were a few things that could be improved in terms of the design. We

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FASHION DIRECTORY

Here are some of the outlets you shared with us that specifically make accessible clothing and accessories: Able2Wear www.able2wear.co.uk Chairmelotte Wheelchair Couture www.chairmelotte.com Clothing Solutions www.clothingsolutions.org.uk designed2enable www.designed2enable.co.uk

did this a few times until we agreed that my prototype was fit for production.

Here is an overview of the product benefits: • They are made for men and women • The waterproof overtrousers are designed especially for wheelchair users • The product fits over your existing trousers in under three minutes, give or take • They’re easily fitted while you are seated in your chair • They come with a waterproof bag for easy storage.

Living Made Easy www.livingmadeeasy.org.uk Rollitex www.rollitex.co.uk Yours www.yoursclothing.co.uk

➜ For more information or to speak to Sam about his unique design, you can email him at samneale121@live.co.uk FORWARD | OCTOBER 2018

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DAILY LIVING: XXXXXX

SPECIALIST LIVE-IN SPINAL INJURY CARE Our specialist approach to bespoke care services offers you the flexibility to live life as you want it – we champion the spontaneity that superior live-in care brings.

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Fully managed care

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Long or short term respite

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Holiday and travel PAs to accompany you on trips abroad or in UK

Owned and managed by Peter Henry, who has himself a C5/6 injury, Origin has a unique insight into how liberating, reassuring and life enhancing good quality live-in care can be.

This guiding principle is at the heart of everything we do.

Providing live-in care services nationwide

Tel: 01524 34100 • www.origincare.com 36

OCTOBER 2018 | FORWARD

DAILY LIVING SECTION

DAILY LIVING

GET USEFUL DAYTO-DAY TIPS AND ADVICE FROM SCI PEOPLE.

TRAVEL | FLYING | FAMILY LIFE

ACHIEVING

UP, UP GOALS AND AWAY

FLYING HIGH

Turn to page 42 to find out how Aerobility can show you the world from a bird’s-eye view.

FORWARD | OCTOBER 2018

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DAILY LIVING: TRAVEL

VENICE OF THE NORTH Amsterdam is a laid-back metropolitan city and top European destination, which welcomed a staggering 6.7m foreign hotel guests in 2017. Offering the perfect blend of history and modern culture, it makes for a great city break or weekend away.

The boarding process was undignified as always. I was hauled out of my wheelchair by two guys, perched precariously on a narrow aisle chair, tied in, wheeled onto the plane, squeezed down the ridiculously narrow aisle as everybody watched, before being unceremoniously dumped into my seat. It’s always a pleasure.

Once we arrived at Amsterdam Airport Schiphol, a pre-booked wheelchair accessible minibus took us to our hotel.

THE HOTEL

ALEX SQUIRE SIA MEMBER have a C1 incomplete SCI and I am a tetraplegic, poweredchair user. I love travelling and, back in April, I visited Amsterdam for the first time.

Amsterdam is known as the ‘Venice of the North’ because of its 165 picturesque canals. The city is famous not only for its waterways but also its culture, architecture, and, ahem, its cannabis.

On 26 April 2018, my two carers and I flew to Amsterdam for five days from East Midlands Airport. The trip was organised by an accessible travel company.

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We stayed in the Hotel Ibis Amsterdam Centre, which is right next door to Centraal Station. There are lots of attractions within walking distance, so it’s a great location.

My room had floor-to-ceiling windows on two sides of the room, lots of space and a wheel-in shower. Being on the seventh floor, we got a fantastic view of the city.

I shared a room with one of my carers and the other one had a separate room.

My room contained a double bed and a pull-out sofa bed. It would have been nice if the double bed separated so I could have slept on the bigger bed. However, the pull-out bed was fine and I managed with a pressure-relieving mattress.

THE CITY

Most of the main streets in Amsterdam are relatively flat and easy to roll around.

Some areas are quite cobbled, such as Dam Square. Nevertheless, the cobbles weren’t too bad. I’ve experienced worse in England.

Most of the bridges are step-free so you can roll over them fairly easily. There are some very narrow alleyways and streets in the city, especially around the famous red light district. These narrow alleys can be difficult or impossible to get a wheelchair down. However, you can still see most of the area.

Frustratingly, I didn’t find a single public disabled toilet while I was there. Not even in any of the restaurants. So, I had to resort to going in dark corners most of the time or sidestreets and hoping no one saw me. I wasn’t the only one either.

Amsterdam must have some disabled toilets somewhere but they are obviously not signposted very well.

However, it is quite easy to stroll around the city. The trams are accessible as well, which can be a quicker and easier way to get around. There is a raised platform at most of the tram stops and it’s usually level with the floor of the tram.

DAILY LIVING: TRAVEL

PLACES I VISITED… BODY WORLDS EXHIBITION

This exhibition displayed real human bodies from people who had donated their bodies to science. The bodies were treated to convert them into plastic statues, which have been arranged in different poses.

Each of the bodies have had their fat and skin removed, so you can see all the muscles and internal organs. It’s a fascinating way to learn about anatomy.

The whole exhibition is wheelchair accessible and there is a lift to take you to all six floors. Unfortunately, the disabled toilet is on the second floor, so if it’s busy there can be a wait for the lift. Overall, this exhibition was amazing and it’s definitely something I’d recommend seeing if you’re interested in human anatomy.

KING’S DAY

King’s Day is a Dutch national holiday and takes place on 27 April each year – which is the King’s actual birthday. Throughout Amsterdam, there are street parties and thousands of people fill the city. Everyone wears orange and at every turn there is music and you see people dancing. Boats packed with revellers glide down the canals pumping out dance music.

In the main square there was a DJ playing electronic music with a large crowd dancing. Many people were selling their unwanted items from blankets on the streets. On King’s Day, anyone can sell their belongings on the roads; it’s one big flea market.

It can be quite hard to get around on King’s Day as there are so many people

around. In addition, they stop all the public transport for the day so you have to walk everywhere. However, it’s great to take in the atmosphere as everyone just has fun.

The downside of King’s Day is that the museums are closed. So really, it took one day of sightseeing away from my trip.

But it was a good experience in itself and I enjoyed the party atmosphere.

RIJKSMUSEUM

If you like paintings then you will love this place! The Rijksmuseum contains lots of paintings from famous artists such as Rembrandt, Vermeer and Van Gogh. The accessibility of the museum was very good. There were lifts to get Alex in front of Rijksmuseum

to the different floors and the staff were very helpful. When we asked someone for directions they didn’t just point in the general direction, they actually led us to where we wanted to go, which was nice.

Some of the more famous paintings can get quite crowded at busy times of the day. So it’s probably better to go to the museum at quieter times to avoid the crowds. Also, book your ticket online beforehand so you don’t have to queue at the entrance.

CANAL CRUISE A great way to see the city is by taking a cruise on the famous canals. I went on one with the Blue Boat Company, which has six accessible boats. These have lifts that enable wheelchair users to board.

Although disappointingly they don’t have an accessible toilet on board. The cruise lasted for 90 minutes and luckily I didn’t need to use the toilet, but I’m not sure what I would have done if I did.

I went on a night cruise that started at 10pm and it was great to see all the city lights. The cruise offered personal audio commentary but, as I have hearing loss, I couldn’t understand what they were saying anyway.

THE VERDICT

Overall, many attractions in Amsterdam are accessible. It’s quite easy to get around the city by either walking/rolling or using the trams. However, lots of the buildings are quite old and may not be very accessible.

Also, it’s difficult to find disabled toilets, which could be a problem. That said, it’s definitely a place worth visiting and I look forward to going back in the future.

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DAILY LIVING: TRAVEL

ORLANDO BY WHEELS Florida is known as the Sunshine State, the home of Mickey Mouse, the Wizarding World of Harry Potter and so much more. With 72m visitors last year, it can be slightly overwhelming with so much to see and do.

Dustine West gives an insight into his family’s favourite holiday destination.

DUSTINE WEST SIA MEMBER have been visiting Orlando annually with my family for more than 20 years and have watched it grow and change throughout this time. In 2011, my life changed when I was knocked off my motorbike by a drunk driver and sustained an SCI. I spent nine months in hospital and had to learn basic life skills all over again, albeit from a chair.

This opened my eyes to the needs of people with disabilities, as I was now a fully-fledged member of the club and saw things from a different perspective.

The first time I returned to Florida in a wheelchair I was full of anticipation of what it would hold in store for my family and me.

It’s safe to say, it didn’t disappoint.

Thorough planning is essential for a stress-free holiday but even more so when in a wheelchair. Plenty of research to find accessible accommodation is recommended, so book in good time.

Good communication with the travel agents and airlines can make travel through the airport and throughout the flight as smooth as possible, although this can

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vary depending on the airline. My issue has always been about the storing of wheelchairs, as people invariably forget they are your legs – the last thing you want to do is arrive for a much-need holiday abroad to find your chair damaged.

I have found US airports to be well prepared, with staff quickly on hand to provide assistance, help you through customs and even collect your baggage for you (always handy to have some dollars to tip).

We booked our hire car in advance and always choose a good-sized seven seater. This gives us plenty of room for my wheelchair and everyone’s luggage.

The first thing I noticed about Orlando is how accessible things are. There are no major obstacles that restrict where you can go and no steps to overcome (or hardly any).

We found the local people friendly and helpful, particularly when trying to get a table at a restaurant. Floridians are generally happy to help and engaging.

They don’t talk to my wife when I am buying something and act as if I am not there; it’s my legs that don’t work properly not my brain or my mouth (although that’s questionable).

The first thing I noticed about Orlando is how accessible things are.

There are no major obstacles that restrict where you can go and no steps to overcome (or hardly any).

The theme parks are set up for people with disabilities and particularly those in wheelchairs. The majority of the rides are accessible. They do provide an accessible pass in the parks but, over the years, this has changed due to the number of people who abused the system by pretending to be disabled, turning up in wheelchairs just so they could get to the front of the queues. Now the passes don’t get you to the front of the queue but will give you a return time to queue through the Fast Pass queue, which may be quicker, but you still have to queue.

We ventured out beyond the theme parks and major tourist hot spots and visited Treasure Island, a beach on the west coast near Tampa. It is so beautiful and not generally crowded, which made it

DAILY LIVING: TRAVEL

We also visited Wild Florida Airboats. This was more remote and although I had my concerns, it actually turned out to be a good experience.

even better. The best news of all was that beach wheelchairs are available for use from the beach cafe for free. All you have to do is leave proof of ID and it’s all yours. It made a day at the beach really memorable.

One of our main highlights was going to see our first basketball match with Orlando Magic playing at the Amway Centre. I had some initial problems obtaining tickets and had to travel to get them, rather than order them over the phone. Once complimentary dining and drinks. they were aware of the issue, they made The Orlando Magic team went out of every effort to ensure we had a fantastic its way to give us a night to remember. night. We were initially invited courtside to We cannot wait to go back next season. watch the pre-match warm-up and then We also visited Wild Florida Airboats. taken down the players tunnel, where This was more remote and although I had we were able to high-five the players as my concerns, it actually turned out to be they came out for the game. We thought a good experience. The ground was a bit we were being escorted up to our seats harder to get round with its loose gravel, afterwards, but instead were surprised with but staff explained that the pathway they aComplete reservedCare tableUnique in oneadvert of thelandscape.qxp_Layout boxes with had1 before got washed away1 in the recent 14/09/2017 09:23 Page

storms. Other than that, it was a really good day and even better getting up close to a sloth, which my daughter loved.

There is so much to do in Florida and generally, everything is accessible. Shops and restaurants are big and roomy, staff seem to have all the time in the world for you and getting round the parks is good.

With staff always on hand to assist, your holiday experience is what it should be – relaxing and stress free.

Your life, your way

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DAILY LIVING: FLYING

AEROBILITY – CHAIRBORNE TO AIRBORNE If you would like to feel the freedom of flying, find out how Aerobility can make your dream a reality.

LEE CAIRNS PEER SUPPORT OFFICER, ARMED FORCES E: L.CAIRNS@SPINAL.CO.UK his year hails the 25th anniversary of Aerobility, the national disabled flying charity in the UK. Aerobility had humble beginnings when it was established back in 1993 and over the years it has gone from strength to strength. It now boasts a fleet of five universally accessible aircraft, which serve more than 1,000 disabled people per year and, without exception, offers the opportunity to fly an aeroplane.

Aerobility is based out of Blackbushe Airport near Camberley, offering fully accessible facilities including offices, classrooms, hangars and a cafe that serves excellent cake! The charity also utilises other airfields throughout the UK, so being unable to get to Blackbushe will not preclude participation.

I was invited to Aerobility by Stu Rowbottom, my now friend who I supported in my capacity as SIA’s Armed Forces Peer Support Officer at DMRC Headley Court. Stu served in the Army and, following medical discharge due to sustaining an SCI, he took up position at Aerobility.

Stu has very successfully transitioned from the forces and his current role as the

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Military Wounded, Injured and Sick (WIS) Manager at Aerobility, is the perfect fit for him. Stu is proving an asset to the charity and the veteran community.

So, with the offer of some cake, a tour of the facilities at Aerobility and the opportunity to go up in an aircraft, I could not refuse the invitation. Aerobility offers several options to fly, from air experience flights to flying lessons and, where appropriate, the opportunity to obtain a private pilot’s licence. Given that Aerobility is a charity, it’s worth noting that it’s not all free. There is some funding available for air experience flights and flying lessons, but anyone interested should contact Aerobility directly to discuss their needs.

Aerobility accommodates all disabilities and from an SCI perspective it’s accessible to all. They have special hoists available for people who require them. While I am writing from my perspective as a veteran, this is something open to everyone and there are specific funding streams for ex-forces.

I arrived at Blackbushe on a warm and sunny day in July with clear blue skies; the perfect day to be flying. After a quick catch-up with Stu, he introduced me to JJ who was to be my instructor for my flight.

As expected I was full of questions but I’m not going to lie, the first thing I did was check how long he’d been flying. A fair question I thought!

JJ is an exceptionally skilled pilot and, satisfied that I was in safe hands, we moved airside and JJ showed me around the plane that we were going to go up in.

While JJ went over the safety brief, we also discussed how I would get into the aircraft.

The method of entry does depend on ability. I opted to transfer onto the wing and bum shuffle up it and into the aircraft. There were plenty of things to grab hold of and JJ was there to give advice and assist when needed. All the pilots at Aerobility are well experienced in helping and giving advice to get people safely in and out of the aircraft.

Once safely in the aircraft, JJ took my wheelchair and stored it securely in a nearby hangar before joining me in the plane. The next order of the day was pre-flight checks and a rundown of the controls. We discussed everything at length and did not go anywhere until JJ was happy that I had grasped it. Once we were ready, JJ started the engines and we taxied to a hold point and awaited permission to take off. I was allowed to steer the aircraft to the hold point, so that I could get a feel for steering the aircraft with the rudder that was on a hand control. It took some getting used to, but it wasn’t as hard as I expected.

We received permission to take off and the aircraft was back in the hands of JJ, so we could get airborne. We taxied to the end of the runway and within minutes we were rattling along and taking off. As we climbed away from Blackbushe I could see Camberley and Reading sprawled out beneath us; it was a spectacular view.

Throughout the flight, JJ gave me a running commentary and there was

DAILY LIVING: FLYING

opportunity to ask questions. Once we For those who prefer to keep their feet/ further flying lessons. As the saying goes, I had caught the bug. were levelled out and doing circuits in the wheels firmly on the ground, the cafe has a I found my time in the air quite a profound allocated airspace above Blackbusche, I viewing area and, as mentioned, the cake experience, which took me by surprise as I was able to take control of the aircraft. JJ is worth a try. wasn’t expecting it to be. For the 45 minutes talked me through some turns plus a little Aside from going up in an aircraft, I was up in the air I completely forgot that my Aerobility also runs the Building a Dream bit of ascending and descending along legs don’t work; those moments are rare. with some instruction on the instruments project, with the aim to construct and fly I finally understood the phrase I had seen and the skill that flying is. a Zenith CH750 aircraft. It will be the first banded around at Aerobility: “If I can fly a All too soon, it was time to bring the aircraft to be built and flown by a disabled plane, what else can I do?” aircraft in to land, so I handed control team. A section of the hangar is fitted with I whole-heartedly encourage everyone to back to JJ who put us back in circuit high and low workstations and specialised have a go. One 30-minute flight experience tools that enable anyone of any ability to and set us on the approach to land. This is all it might take to open the door to provided more time for me to take some get involved. Bespoke training days are bigger things and show that there is life photos, ask questions and enjoy the organised to provide instruction on all tools after SCI. moment. and techniques.

Once we had landed, my exit from the aircraft was a reverse of my entry – a notAnyone interested in being involved with the Building a Dream project or so-elegant bum shuffle down the wing but going on a flight experience should contact Aerobility directly via the experience was well worth the effort. frontdesk@aerobility.com Full details can be found at www.aerobility.com Back on solid ground I bid goodbye to JJ DM ad_63mm x193mmV4_HR 04/07/2017 13:18 Page 1 and went to register my interest to have

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DAILY LIVING: SPORT

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 Care Certificate Standards and 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 44

OCTOBER 2018 | FORWARD

DAILY LIVING: FAMILY LIFE

NAVIGATING THE WORLD OF SCI THE FAMILY PERSPECTIVE Knowing first-hand how difficult it can be for families and friends of SCI people in the early days of injury, Samantha Duffy encourages others going through the experience to seek support at the earliest opportunity.

SAMANTHA DUFFY FAMILY & FRIEND MEMBER n March 2017, I received the phone call no one wants, the call to let you know your loved one has been in an accident and it’s serious. My partner Andy was out on his motorbike with his brother when he was involved in a road traffic accident. Due to the seriousness of his injuries, the air ambulance was dispatched. During the journey to the hospital both of Andy’s lungs collapsed and he suffered two cardiac arrests.

The next 24 hours were the worst of my life, as we didn’t know if he was going to survive. I would have given anything for a glimpse into the future to end the torture of the unknown. We were told to prepare for the worst, as the medical team couldn’t guarantee anything. Thankfully, Andy pulled through and although he was still wired up to a lot of machinery (including a tracheostomy, which meant he couldn’t speak to us), as he gradually woke up it was clear that he recognised us, which was such a relief.

Andy was diagnosed with a C4-7 complete SCI. He’s paralysed from the top of his chest down with little movement in his fingers and 60% lung capacity.

Following his time in intensive care at two Nottingham hospitals, Andy was sent to the Sheffield SCI Centre for nine months of rehab. The journey from my home to Sheffield took one-and-a-half hours, which meant I could no longer see Andy on a daily basis. During this period, I returned to work full time. I couldn’t believe how nothing there had changed. How could

I

people still be acting normal when our lives were in complete turmoil?

I travelled to Sheffield every Friday to spend the weekend with Andy and during the week, with help and support from our amazing family and friends, I tried to plan how we could adapt our house. It was not accessible for Andy and had to be ready for his discharge from rehab.

All of this was a massive learning curve. The change of lifestyle, living in our new home alone and trying to support Andy with phone calls every night, was a struggle both mentally and physically.

Little professional support regarding available funding was provided and we had no idea which way to turn or where to go for advice. At this point, on top of everything else, I threw myself into researching all aspects of living with disabilities. Although it is a huge blow when you recognise some of the realities of living with an SCI, the research prepared us both in coming to terms with these realities.

Positive stories from inspiring people also gave us hope for the future.

In hindsight, being able to talk to other people in similar situations who had experienced these difficult processes and who could have offered us guidance would

have saved so much time, frustration and setbacks in applying for funding and adaptions. It would have also helped me mentally from speaking to someone who has been through similar personal issues.

Andy’s been home for a while now and we’re getting our lives back on track. Our home is being adapted and the funding level has finally been agreed for his care package.

I found it unsettling having carers at first, as it felt awkward having them in our home to take care of Andy’s physical needs. However, it meant that he was getting professional care and we could concentrate on being a couple again, which has helped us immensely.

As expected, we have good and bad days and are both aware that we still have a long road ahead with much to learn and hurdles to overcome. However, we know how lucky we are. I believe the accident made us stronger as individuals but also as a couple. Our relationship has developed and grown as it’s been tested.

During his time in hospital, I needed to be strong for Andy, but this kind of injury has affected both of our lives and now we lean on each other. If I could give any advice, I would tell others to not be afraid to ask for help and when it’s offered by loved ones, take it!

LET SIA HELP YOU AND YOUR LOVED ONES We offer a range of services to help SCI people and their families and friends, from peer support to telephone counselling and healthcare funding casework. Visit www.spinal.co.uk or call 01908 604 191 today.

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EMPLOYMENT: VOLUNTEERING

WOULD YOU LIKE TO SHARE YOUR EMPLOYMENT EXPERIENCES? EMAIL BREDA AT B.DUGGAN@SPINAL.CO.UK

SHARING MY EXPERIENCE – HELPING FUTURE GENERATIONS When Lauren Doherty sustained an SCI as a result of a road traffic accident, she decided to share her experiences to help educate community groups about road safety and accident prevention. was a carefree teenager who lived life to the max, always hanging around with my friends; we loved going out.

Career wise, I didn’t really know what I wanted to do, but I always had a job. This changed when I was successful in gaining a position at a local college, supporting individuals living with visual impairments. I knew that I had found my vocation in life.

A few months after starting the course, life as I knew it was to change forever.

It was a summer’s evening in August 2008 and I had been out with a group of my friends in our local town to watch a band play. Some of us went back to a friend’s house and at about 4am I set off walking back home. A friend walked with me.

I don’t know what made me cross the road at the wrong time, but I did it without looking and taking due care and attention.

I was hit by a van and I’m now completely paralysed and need everything doing for me.

I broke my neck and required an operation to stabilise the vertebrae. My pelvis and wrist were also broken. I had a bleed from my aorta requiring a stent and compartment syndrome requiring an operation on my legs. I also needed a skin graft on my legs and a tracheostomy for ventilation. I was in an induced coma for the first three days and subsequently spent three-and-a-half weeks in intensive care.

In total, I spent 16 months in different hospitals, with the last eight months spent in an SCI Centre.

I remember all the conversations that used to go on at my bedside. One in particular was around the fact that I wouldn’t be able to breathe again for myself. I remember feeling so determined

RAISING AWARENESS

I

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LAUREN DOHERTY SIA MEMBER

that I would be able to do so, I made it my focus to prove everyone wrong. Eventually, after two years of trials, I was in a position to not be completely dependent on a machine to help me breathe all of the time, which means a great deal to me.

On 23 November 2009, I moved back to my parents’ home which was redesigned (they had only just had a new extension completed!) to allow the installation of all my equipment and to accommodate the two carers I needed with me at all times. The task of totally rebuilding my life began. By October 2013, I was able to move into my own purpose-built bungalow. This allowed me to live independently, which I so wanted.

I always wanted to speak about road safety in schools, but felt anxious about doing so; how would it be received?

In 2016, I visited my first primary school.

I was grateful for the opportunity as it helped me to gauge the children’s reaction.

It was really well received by the children and the staff. To date, I have spoken at more than 20 local schools and groups (Brownies, Cubs etc.). I have received such a warm welcome at every place I have visited, which I really do appreciate. I have also recently started promoting what I do through social media and have had a great response to this too.

I talk about the fact that my accident didn’t only have an impact on me, it has had a massive impact on my family and also the driver.

I believe that being open and honest about my life is the best way to be with the children. They respond extremely well and ask a lot of questions. My hope is that by sharing the reality of what can happen if you don’t take care when crossing the road, it will, in a small way, help reduce the number of accidents on the roads.

The message I wish to get across is aimed at all age groups. From holding parents’ hands, not using your mobile phone while crossing the road, to being aware of the roads on a night out. It’s all relevant.

SPREADING THE WORD

I got involved with the Royal Society for the Prevention of Accidents (RoSPA) recently, after I approached them about sharing my story. The organisation shares real-life experiences of all types of accidents on

EMPLOYMENT: VOLUNTEERING

its website in the hope of saving lives and preventing life-changing injuries. I hope to work with the RoSPA again to raise awareness amongst all age groups about road safety.

GETTING SOMETHING BACK

By volunteering my time in the community, I have a gained a purpose again as well as having a project I can focus on. When I have a bad day, which I still do ten years on from my accident, I often think about the work I am doing, the great feedback, letters, emails and pictures I have received from the children, their parents, teachers and even my local MP. It motivates me to stay positive.

I hope also to benefit others in demonstrating that just because you have had an accident and you are in a wheelchair, your life isn’t over. You have to try your best to readjust to your new life and make the most of every new opportunity available to you.

COMMUNITY RECOGNITION

Unbeknown to me, I was nominated for a bravery award from a local radio station by someone who works closely with me on my road safety presentations. I was nominated for the work I do in local schools and clubs to raise awareness around road safety and the impact an accident like mine has on not just your life, but also your family’s life.

I was very overwhelmed to receive the award as there were some amazing nominees in the same category as me, who I felt all deserved to win.

Although I do spend time by myself, I must have a baby monitor by my side in case I need any assistance or if there is an emergency. If I make a call to my friends or family, my conversation is heard through the monitor. I have had to accept that this is my life now.

To use my TV, computer, phone and to turn my lights on and off, I use a device called an Eyegaze, similar to an iPad. I control it using my eyes. It detects my eye movement or when I tire of this, I can use a mouthpiece, which is like a computer mouse.

I enjoy shopping, going out and spending time with my friends, going to the cinema and concerts, taking my niece out and spending time with my family. I just can’t do anything quickly or without planning now. The times I would just nip to see a friend or nip into town by myself have gone.

My life will never be the same again as a result of not concentrating on the road and making a life-changing, split-second decision to cross it at the wrong time. I hope that by sharing my story, it makes people aware of the impact an accident can have, not only on your life, but on everyone involved. If my story prevents even one person from experiencing what I have been through, then talking to people about my life and road safety is worthwhile.

COMING TO TERMS WITH WHAT HAPPENED

VOLUNTEER FOR SIA

The reality is that I now need two carers around me all the time, if not by my side, then in a room near me. They do everything for me from getting me washed, brushing my teeth, scratching my nose if I have an itch, cooking and feeding me my tea and enabling me to go places.

If you’d like to volunteer to either give back to the community or to develop and learn new skills, why not volunteer for SIA? There are lots of opportunities available. Email Jen Sims at j.sims@spinal.co.uk

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CLASSIFIEDS

OCTOBER 2018 CLASSIFIED ADVERTS VEHICLES 2017 VW CARAVELLE EXECUTIVE SWB 1,452 miles. Excellent condition. RRP £76,000. Starlight Blue. Professionally adapted for rear wheelchair passenger access. Lots of extras and full documentation. For more info/ photos contact 07759 177573 or email janetamines@gmail.com £43,000 ONO.

EQUIPMENT TRAVEL HOIST Molift Smart 150 electric travel hoist. Never used. £2,000. Bournemouth. Would consider delivery within reasonable distance. If courier is required, terms to be agreed with buyer. Email bij100@hotmail.co.uk

PORTABLE SHOWER CHAIR AND COMMODE SELF-PROPEL Cushioned seat (18 inches in width), adjustable foot rest, padded arm rest, brakes, comes in wheeled travel case.

Bought in USA. Never used. Cost €2,000.

Located in the west of Ireland. County Galway. Buyer must arrange courier fee. Can send photo on request. Price negotiable. Tel: 0035 3877 993 778.

Email: endacoleman8@gmail.com

PROPERTY FOR SALE FAREHAM, HAMPSHIRE 4 Bedroom detached house for sale in Stubbington near Fareham, Hampshire.

Close to shops and other local amenities.

House adapted for a wheelchair user including a Wessex VM36 lift and V4 ceiling hoist in master bedroom. Family sized bathroom including wheelchair accessible shower. Large lounge and dining room, office, large conservatory, kitchen and WC downstairs. Attached

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garage and workshop. Shrubs and off road parking for 4 cars at front with gated access to large mature garden at rear.

Guide price of £450k to £465k. Tel 01329 664783 for more details.

HOLIDAY TRANSPORT 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 07785-338497.

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. Height-

adjustable 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

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.

SPAIN, COSTA BLANCA, JAVEA Spacious, fully-equipped, luxury, five-bedroom villa, sleeps 10. Three bathrooms (two ensuite, one with rollin 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

CLASSIFIEDS SPAIN, COSTA BLANCA, TORREVIEJA Established, detached family villa with lovely gardens in sunny Torrevieja on the Spanish Costa Blanca. Huge wheel-in 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

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 !

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

Complimentary accessible car, pool lift, hoist, shower trolley, shower/commode chair, massage table, airport transfers.

Fantastic family holiday villa, www.algarvevacations.com e-mail info@algarvevacations.com or call 00 351 919 032 377.

CYPRUS 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

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 – wheel-in wetroom, hoist, shower chair. Theraposture profiling or Baltic beds, ceiling hoist. 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

AFRICA

ALAMANCIL, ALGARVE Outstanding, fully-accessible luxury private villa set in beautiful countryside.

Three bedrooms, all ensuite with wheelin 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

PORTUGAL ALGARVE Luz do Sol 4 bedroom villa with pool enjoys panoramic sea views, peaceful location Sleeps 7 spacious and light.

AMERICA

ORANGE TREE, ORLANDO, FLORIDA Five bed/four bath, purpose-built wheelchair accessible villa overlooking lake and conservation area. Level access throughout. Wheel-in shower and shower chair. Non-chlorine x-large pool with spa, both accessible by hoist.

Free Wi-Fi, sleeps 12, short drive to attractions and amenities. Paraplegic owner. www.ayersfloridavillas.com Email: lucy@ayersfloridavillas.com

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, selfcatering 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.

SCOTLAND

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

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

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CLASSIFIEDS

ENGLAND 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

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 heightadjusted 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.endeavouruk.co.uk Contact Becky becky@ endeavour-uk.co.uk 01202 630 075.

SUPPORT SERVICES SIA MERSEYSIDE The ever popular Merseyside SIA support group meets on the first Wednesday of each month at 2 - 5pm in the Brain Charity

building, Norton Street, Liverpool L3 8LR. The meeting is open to anyone in the North West area, and we usually have a dozen or so attendees. A free lunch is available from 1pm. Visit www.spinal.co.uk for more information. Click ‘Get Support’ at the top of the screen and then select ‘SIA Merseyside’.

JO-ANNE’S PERSONAL ASSISTANCE SERVICE Taking bookings throughout 2018. 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 December 2018 issue is Wednesday 7 November 2018.

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.

Origin Respite (Thumbs up) Final Nov 2016 193 x 63 Choice (Forward) Page 1 SIA cannot take responsibility for any inaccuracies or omissions andgirls_Origin purchases/bookings made are entirely 24/11/2016 at your own risk.11:21 If you have any comments, please email b.duggan@spinal.co.uk

RELIABLE RESPITE CARE…

FOR A FEW DAYS OR A FEW WEEKS l l l l l

Exclusively focused on spinal injury care All PAs trained in spinal injury care Respite packages or holiday bookings Personally interviewed, English speaking PAs Driving skills assessed

Quality live-in care - when you need it most!

For further information call Peter Henry (C5/6) or Linda Adamsen on 01524 34100 or visit www.origincare.com 52

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YOUR NO-FUSS FORWARD MAGAZINE SUBSCRIPTION ONLY £20 A YEAR

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Read about the latest eye-catching designs and innovative technologies.

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IN LONDON AND LIVERPOOL THIS SEPTEM PAGE BER 13

NEVER MISS YOUR COPY! SUBSCRIBE BY DIRECT DEBIT Fill in the form below and return to Spinal Injuries Association at SIA House, 2 Trueman Place, Milton Keynes, MK6 2HH. Or, you can set up your Direct Debit by speaking directly with a member of staff. Call our membership hotline on 01908 208 541.

BROUGHT TO YOU THROU GH OUR PARTNERSHIP WITH

BROUGHT TO YOU THROUGH OUR PARTNERSHIP WITH

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Choose your Annual FORWARD Subscription (please tick as appropriate)  £20 for individuals within the UK  £25 for individuals within the EU  £32 for individuals outside the EU  £200 life subscription Your details: We will use your contact details to process your subscription.

Title:.................... First Name:........................................................................................................ Surname:......................................................................................................................

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Email Address :............................................................................................................................................ Telephone Number:....................................................................................

TO STAY IN TOUCH

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.

Instruction to your Bank or Building Society to pay by Direct Debit Please fill in the whole form and send it to: Spinal Injuries Association, SIA House, 2 Trueman Place, Milton Keynes, MK6 2HH Name and full postal address of your Bank or Building Society To: The Manager

Service user number

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Bank/building society

Address Postcode Instruction to your Bank or Building Society Please pay Spinal Injuries Association Direct Debits from the account detailed in this instruction subject to the safeguards assured by the Direct Debit Guarantee. I understand that this instruction may remain with Spinal Injuries Association and, if so, details will be passed electronically to my Bank/Building Society.

Name(s) of Account Holder(s)

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Date DDI 8 5/15

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The Direct Debit Guarantee • This Guarantee is offered by all banks and building societies that accept instructions to pay Direct Debits.

• If there are any changes to the amount, date or frequency of your Direct Debit Spinal Injuries Association will notify you 14 working days in advance of your account being debited or as otherwise agreed. If you request Spinal Injuries Association to collect a payment, confirmation of the amount and date will be given to you at the time of the request.

• If an error is made in the payment of your Direct Debit, by Spinal Injuries Association or your bank of building society, you are entitled to a full and immediate refund of the amount paid from your bank or building society.

- If you receive a refund you are not entitled to, you must pay it back when Spinal Injuries Association asks you to.

• You can cancel a Direct Debit at any time by simply contacting your bank or building society. Written confirmation may be required. Please also notify us.

EXCLUSIVE TO FORWARD READERS – SUBSCRIBER BENEFITS SCHEME Add value to your annual subscription and save money on insurance, holidays and home improvements.

Our partners offer up to 10% discount to FORWARD subscribers for their products and services.

Participating partners in the scheme include Fish

Insurance, Fast-Tec Wetroom Solutions and Flexicruise.

We will continue to add new partners to give you discounts over a wide range of products and services.

For more information visit www.spinal.co.uk or call the Supporter Care team on 01908 208 541.

FORWARD | OCTOBER 2018

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FINAL WORD: SIA VICE-PRESIDENT

FINAL WORD

MEET ONE OF SIA’S VICEPRESIDENTS.

LADY GILLIAN HOWARD DE WALDEN SIA’s Vice-Presidents have long-standing connections with the charity and support its vision of a fulfilled life for everyone affected by SCI. Read about Vice-President Lady Gillian Howard de Walden, and how she has supported SIA since the early 90s. joined SIA as a Vice-President in 1991. I knew Monty Court, the editor of Sporting Life at the time, who was already a supporter of SIA. He asked if I could help with the Charity’s race days. My husband, Lord Howard de Walden, was involved with racing so it was natural that I should lend my support. My old friend and Founder of SIA, Baroness Masham of Ilton, welcomed my involvement.

At the time, SIA was located at St James’ Lane in Muswell Hill, London, where SIA’s first Executive Director, Stephen Bradshaw, was in post. He played a big part in my association with the Charity, which he led for more than 20 years bringing about many of the legislative changes that exist on the statute books today.

In earlier years, my husband and I would host an annual evening reception to which we invited around 60 of the leading SCI healthcare professionals, consultants, surgeons and head nurses. It was a great opportunity for the specialists from all over the country to discuss the care, treatment and needs of SCI people with their peers.

Baroness Masham would also attend and they were happy and rewarding occasions.

The majority of my support has centred on SIA’s equestrian fundraising events.

Over the years, the Charity has hosted many successful race days at Doncaster,

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HRH The Princess Royal and Lady Gillian Howard de Walden attending an SIA fundraiser at Ascot, 2014

Newbury and Newmarket. Through the connections and generosity of another SIA Vice-President, Paul Roy, we have also held several race days at Ascot, which have resulted in considerable financial success.

I have also taken part in community fundraising events such as Going the Distance, where our generous supporters have given their time to raise funds for SIA. It is particularly rewarding to see our members and their families and friends all coming together for not only the Charity, but also the wider community and those affected by SCI. SIA has changed phenomenally over the years, supporting an ever-increasing number of people. It has been a pleasure to watch the valuable Peer Support service grow and the introduction of the SCI Nurse Specialist service. It’s another wonderful achievement and milestone in the Charity’s history. The unique SCI Nurse Specialist service is not provided by any other spinal charity and the demand for such support is growing at a significant rate.

We are fortunate that HRH The Princess Royal became our Patron on the Charity’s 10th anniversary in 1984. She has faithfully supported the organisation as it has grown and developed over the years and attends our events regularly.

It is important to remember that none of this would have been possible without our Founder and President, Baroness Masham.

Through her work for SIA and as an active member of the House of Lords, she has worked miracles not only for SCI people but also for the wider disability community.

In this age of austerity, one of the biggest challenges facing charities is securing income. However, I have experienced that the United Kingdom is particularly sympathetic and supportive of others and, thanks to grants, corporate sponsorships, legacies and donations, we have gone from strength to strength over the past 44 years.

Sustaining and generating new income streams remains a priority to ensure that the Charity continues to support everyone affected by SCI, and helps those living with SCI to live fulfilled lives.