SIA forward Autumn 2023

Ihope you enjoyed a relaxing and sunshine-filled summer. As the seasons begin to change and we look towards autumn, I’m reminded that for farming communities, this is a season of harvest, of reaping the fruits of months upon months of labour.

While looking around me at the work of everyone here at SIA over the past few years, I can’t help but draw parallels with our ambitions and achievements as an organisation. It has been a time of immense growth. And as you will read about on pages 46 and 47, our exciting new Strategy 2030 will ensure our services continue reaching more and more people with spinal cord injuries (SCI) and their families over the next seven years.

Our strategy was launched at the Rebuilding Lives Festival held at the Library of Birmingham back in June, where I was struck by the power of shared storytelling. This was the second year SIA has run the event, which I was privileged to co-host alongside our vice

REBUILDING LIVES

president Gerard McDermott KC. The festival aims to educate and empower junior legal professionals to help make it a better world for people living with spinal cord injuries and you can read more about it on page 48. Over 200 attendees had the chance to learn more about the impact of SCI and how SIA supports people post-injury through talks from staff and leading industry experts. We heard powerful, personal stories from SIA members Jerry Ward and Suzanne MacLeod and of course from our keynote speaker Jonathan Goodwin. For those attendees learning about SCI for the first time who will go on to use that knowledge in the work they do, these personal stories of living with SCI are invaluable and we are so grateful to all our speakers.

I was also delighted to attend SIA’s first ever Polo Event thanks to the help of some new supporters we met during the Martin’s Mountain project. Our patron, HRH The Princess Royal, attended the event, held on a beautiful summer’s day which

WHO WE ARE

provided us with the opportunity to welcome supporters old and new to SIA and to our work. You can read more about the day on page 48.

In this autumn issue of Forward you will read many powerful stories and hear how the people behind these stories have rebuilt their lives after SCI. Beginning on page 8, surgeon Mo Belal describes the balance he strives to achieve between his work and family lives alongside his own health priorities as someone living with SCI. He explains that his injury has made him a “different kind of doctor”. We are all changed by spinal cord injury and SIA is here to ensure that all those affected have the support, guidance and tools to rebuild their lives.

With our new strategy in mind, I look forward to seeing how we continue to grow over the next seven years and to reaching more people than ever before.

FAISAL

f.hussain@spinal.co.uk

SIA

We are all changed by spinal cord injury and SIA is here to ensure that all those affected have the support, guidance and tools to rebuild their lives

So, There I Was... at a ‘notorious’ Duran Duran concert

26 Becoming a mindset coach – read Shanice Green’s astonishing story

What does being part of our support network mean to our incredible volunteers?

EDITOR’S COMMENT

EDITORS’ COMMENT

Strategy 2030: SIA’s seven-year plan to improve lives, tackle healthcare inequalities and rally support for our cause

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“This swathe of dummy text is helpfully written to be inserted for general visual purposes and to facilitate.”

Welcome! We’re full of introductions in our autumn issue – to our invaluable new support coordinators and of course to Strategy 2030, which sets out SIA’s ambitions to enable more and more people with spinal cord injury to live fulfilled lives of their choosing. Tell us what you think!

From Sally and Emma.

READ MARK RICHARDSON’S REPORT ON PXX

ON THE COVER 40

45 Welcome from our CEO Nik Hartley

46 Introducing SIA’s new seven-year strategy

32

DAILY

Meet SIA's newest support coordinators

56

MAKING THE

The challenges of working as a surgeon after spinal cord injury

Iwas injured while out cycling with a friend in February 2021. I was hit by a falling tree and sustained a T4 ASIA B spinal cord injury (SCI). I spent four months in the London Spinal Unit at Stanmore before getting home to my family in Birmingham. I returned to Stanmore for three months of inpatient rehabilitation before getting back to work in November 2022 at the Queen Elizabeth Hospital, Birmingham where I’d worked for 12 years.

“Reflecting on the experience of returning to work as a surgeon after SCI, I realise there’s lots I don’t yet know and have still to learn. But here’s what I’ve learnt from this journey so far.

PLANNING

“When thinking about returning to work, hold in mind the kind of person you are – both before your injury and now. What kind of things gave you pleasure or a sense of achievement before?

For me I was always busy and enjoyed giving back, so I knew it was worth the effort to try and achieve that again. Others prefer a quieter life, but still need a connection to others and a role outside the home which work can give.

“I remember when I first returned home from the London Spinal Unit, I told my wife I planned to be back at work in a few months. I soon learned this wasn’t realistic. Returning to work takes significant planning. I had to be honest with myself in accepting my body and brain needed more time. Equally, giving myself goals was helpful in pushing me.

“I was fortunate to get a lot of support; from work colleagues, occupational health, physiotherapists and my NHS Trust, which was needed to navigate practical barriers. This included considering my journey through work in a step-bystep way: which aspects can I complete at home, how to ensure parking, bathroom access etc. For me to

MO BELAL Consultant urologist

Mo received a warm welcome on his return to work at the Queen Elizabeth Hospital, Birmingham.

Returning to work takes significant planning. I had to be honest with myself in accepting my body and brain needed more time

be able to begin surgical work, lots of equipment was tested and trialled. You may find some things won’t work – so look for another way round the problem, or there may be times you need to accept your role might have to change. It is normal to be concerned about returning to work but without trying, you’ll never know.

PRIORITISING HEALTH

“It’s essential to prioritise our physical health after spinal cord injury. Work puts extra strains on us and there are additional risks to weigh up alongside the benefits. It’s essential to ensure your environment is safe and is supportive to your needs. I personally have accepted that work for me will never be full-time, due to the strain it puts on my body (skin, fatigue, physical strain etc) and the need to keep up my health routine. Once we’re working, we have less time for the crucial regular physio and health activities. I have had to ensure physio, exercise, muscle stimulation and regular standing are scheduled into my week.

KEEPING WORK-LIFE BALANCE

“Once you return to work it’s easy to fall into bad habits, such as neglecting self-care and the people who are important to you. Ensuring I schedule in time with those I care about as well as other activities out of the home helps. But sometimes the exhaustion needs to be listened to and I need to take time to just rest. As people with spinal injuries, we all know the need to adjust. It’s not going to be the same – in some ways, it can be better.

“I’ve learnt so much about myself and about others since my injury. At work this learning has made me a different kind of doctor. It’s made me more patient and has given me a better understanding of other people’s challenges. I also really appreciate work now, after being unable to for so long.

“I have a new sense of purpose. It makes me happy to be able to give back to those in need. After experiencing real need myself, and after receiving so much help, I’ve such an awareness of how important this is. My work has most importantly allowed me to widen my perspective; it’s easy to get stuck in your own rehab world!

“Lastly, working lets me represent my SCI community, and hopefully encourages others to strive for a rich and fulfilling life.”

Mo and team after finishing his first successful round of operations post-injury

Enjoying time with his family on holiday

SPINAL CORD INJURY AWARENESS DAY 2023

Shining a spotlight on the everyday obstacles

Earlier this year Mo Belal kindly helped support our work during Spinal Cord Injury Awareness Day (SCIAD).

An annual event, SCIAD gives us a platform to raise awareness about spinal cord injury (SCI) and shed light on the daily challenges faced by individuals and our members.

This year’s focus revolved around our bowel care campaign #serioussh1t which aims to stop patients with SCI suffering harmful neglect through lack of essential bowel care in medical settings. Appropriate specialist bowel care is

crucial and our campaign highlights the serious consequences of not receiving adequate help.

Appearing on our social media channels to promote the day, Mo said: “There is still a lack of knowledge around the public perception of SCI. SCI Awareness Day is important so more of us have a greater understanding of the many issues that people living with SCI face on a day-to-day basis. After a spinal cord injury, you long to walk, but this is just the tip of the iceberg. As time goes on, it’s bladder and bowel control you desperately want.”

More information about the #serioussh1t campaign can be found here: spinal.co.uk/this-is-serioussh1t/

#SERIOUSSH1T

THIS IS

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WHAT MATTERS MOST

Thanks for sharing the issues that matter most to you during our annual survey – your responses matter!

What Matters?’ is the annual survey SIA conducts to find out what really matters to you and others in the spinal cord injured (SCI) community.

To those who took part, thank you. This year, we had our biggest response yet to the survey, with almost 1,000 people taking time to share their experiences, 876 of whom are those living with SCI.

MIND

The survey findings do not make an easy read. You’ve shared heart breaking and shocking experiences with us. But in doing so, you’ve lent your voice to a movement for change; when we join together to be louder and bolder we make it harder for society to look away from these issues.

HANNAH AUBREY SIA Academy and impact manager h.aubrey@spinal.co.uk

Covering three key areas –Mind, Body and Life – we present a summary of the ‘What Matters?’ survey findings below.

For more information and to download the report in full, please visit spinal. co.uk/news/whatmatters-2023/

This year we wanted to learn more about how SCI impacts wellbeing, emotions and mental health.

Almost half of our respondents –47% – told us anxiety or depression has affected them, with 41% telling us friend, family and intimate relationships had been impacted. Having a SCI affects so many aspects of life – personal relationships can make a difference to the person injured and their family.

41% 47% 41%

47%

Anxiety and depression has affected 47% of people living with SCI.

41% of respondents reported that the anxiety or depression caused from living with SCI impacts their relationships with family, friends and partners.

“My mental health and physical health have suffered. I don’t see friends anymore. I feel like a burden.”

“(I) have a wonderful family who have helped me through the last 38 years, but I still get depressed when I cannot help or do anything in return.”

“I’ve generally fewer friends [because of the] ability to go out to meet or go to friends’ homes. (I’m) restricted with hobbies leading to boredom and depression.”

BODY

Bowel and bladder management remain key issues. Being able to feel comfortable, confident and to manage these aspects of everyday life is challenging, according to our survey respondents. Many also feel they do not have professional support available to them through the NHS or that healthcare professionals have a good enough understanding of their unique needs in medical settings, like general hospitals. We’ve highlighted this through our #Serioussh1t campaign, which highlights the importance of good bowel care for people living with SCI if they find themselves in hospital.

“The cardiac ward had no one allowed to help with bowel management. I was very weak after being transferred from the intensive care ward. (I was) just left to try and sort myself out in bed.”

WHAT MATTERS 2023 – COST OF LIVING

This year’s cost-of-living crisis put many of our survey respondents through a really challenging winter.

As heating bills soared, many reported pain levels increasing due to being unable to keep warm at home. We were told that some resorted to wearing ski clothes indoors or wrapping themselves in blankets and duvets and staying in bed all day, rather than turning on the heating. Many said the cold adversely affects pain levels and their ability to walk, with some struggling even to move around their own homes.

Simply switching off the heating isn’t a safe option for those who cannot regulate their body temperature. We heard stories of hidden additional costs such as an increased use of the washing machine due to double incontinence.

With benefits falling short, exactly 80% of respondents said they were already worried about next winter. We were told that people turned to debt and food banks, which increased feelings of anxiety and depression.

Many reported feeling angry, isolated and upset as they were forced to cut back on food and their social lives. Anxiety about increasing bills was another stress with one person telling us:

“I feel scared to death – currently spending £430 a month on gas and electricity.”

35% 35%

Ageing and how this impacts those living with SCI was a concern highlighted by 35% of respondents this year.

“Ageing with SCI is probably the most challenging thing I face. I can see me losing the ability to do the things I could do before e.g. independent transfers, driving, going out etc. Therefore, shrinking my environment even further.”

Now the temperature has warmed up, things have improved but many respondents have no way of increasing their income and are concerned about how to absorb these additional costs next winter.

Turn over to read more findings from our 'What Matters?' survey

“There were no wheelchair accessible toilets on the ward so I had to use the public disabled toilet in the hospital entrance after 10pm instead.”

“Talking about everyday problems is not always easy for able-bodied people to understand. I feel good any time someone comments that they view disabled people differently after meeting me.”

LIFE

Accessing the outdoors and countryside is challenging for most of our respondents – 90%. Issues with accessible parking was highlighted by 84%. Whether it’s going to the shops or enjoying a meal out, lack of accessibility can impact feelings of inclusion and an ability to join in with what others are doing.

Sadly 89% of our respondents do feel society’s attitude towards disabled people impacts their lives. Martin’s Mountain, which saw our vice president Martin Hibbert scale Tanzania’s Mt Kilimanjaro in a wheelchair has helped raise the profile of people living with SCI greatly this year. We hope that this, alongside our campaigning, will help more people in the SCI community feel respected, appreciated and understood.

“Everything I do and everywhere I go needs researching to the nth degree and then usually goes horribly wrong. Steps into buildings, someone already in the wheelchair space, no-one with a ramp to get off the train, accessible toilets or lifts not provided or ‘out of service’.”

89% 89%

See page 13 for more detail on how the cost of living crisis’ is impacting the SCI community of respondents feel society’s attitude towards disabled people impacts their lives.

“Shifting public perception matters to me. I need people to understand that we (disabled people) don’t accept inaccessibility just because we’re used to it.”

A DAY IN THE LIFE OF A BULLEN HEALTHCARE DRIVER

Delivering care and essential supplies to SIA Healthcare patients

It’s 7am and Bullen Healthcare driver Lorraine Pennington has just arrived at work. She begins her day by logging into her PDA (mobile device), which displays all the information she needs to efficiently carry out her work.

In partnership with SIA, Bullen Healthcare plays a crucial role in providing essential stoma and urology products, as well as medication prescriptions, to patients in need. Lorraine, as a dedicated Bullen driver, ensures that these lifechanging supplies are delivered to SIA Healthcare patients promptly and with the greatest of care.

“I love my job, as I know we make such a difference to people’s lives with the essential services we deliver. I know how important and sometimes uplifting our visits can be to our patients. I would like to think I have a great rapport with patients young and old. I think this is key to making them feel comfortable as sometimes I am the only person they see for hours at a time. I love to see them day in day out, to see them smile and have a catch up.”

compassion and understanding towards the patients she serves. Recognising how these deliveries help maintain the well-being of her customers, she goes above and beyond to ensure that not only the supplies but also genuine care and support reach those in need.

Lorraine’s schedule varies depending on the day, but she usually returns to the depot by 5pm. Once back, she reports any challenges encountered during deliveries to supervisors, allowing the team to swiftly address any issues by contacting patients for potential redelivery or adjusting delivery instructions.

Lorraine's commitment is shared by her fellow Bullen drivers, all working towards a common goal of providing unwavering support to SIA Healthcare members

Lorraine understands the importance of seamless service and ensures every member receives their parcels. Where an emergency arises, Lorraine collaborates with the on-call driver or one of the supervisors to deliver urgent parcels on the same day. This exceptional level of responsiveness ensures critical supplies reach members without delay.

Lorraine's commitment is shared by her fellow Bullen drivers, all working towards

a common goal of providing unwavering support to SIA Healthcare members. Despite any challenges that arise, such as logistical hurdles or potential delays, the drivers remain steadfast in their commitment to delivering essential supplies. Compassion, professionalism, and a deep understanding of the importance of their work form the foundation of their routines.

Lorraine first checks her vehicle is in good working order for the day's deliveries. She then proceeds to load up the parcels, carefully comparing them against her daily route plan. With the help of her PDA, Lorraine can easily identify any missing or extra parcels and efficiently resolve any issues before hitting the road.

It’s now 10am and Lorraine has arrived at the home of an SIA member who has been using the service for five years. Having built a rapport over time, Lorraine understands her visits extend beyond the delivery of supplies. After placing the parcel on the kitchen table as per the prescribed instructions, she takes a moment to have a friendly chat with the member.

As the day continues, Lorraine follows her well-established route and with each encounter, demonstrates unwavering

Lorraine understands that her role as a designated delivery driver for Bullen Healthcare helps ensure the wellbeing of SIA members

WALKING WITH A SPINAL CORD INJURY

As you age, living with spinal cord injury brings all sorts of challenges. But how do those challenges differ if you have a SCI but can still walk? Here, our ageing expert Joy Sinclair looks at some of the common physical changes of those with SCI who can walk

JOY SINCLAIR

Ageing well consultant

The issues faced daily by spinal cord injured ‘walkers’ can differ greatly from those of wheelchair users. It is difficult for the general population to comprehend the extent of a walker’s injury. You may feel you are not given the necessary space or respect that you deserve when your injury is invisible or unseen to the outside world.

For the general public, and even sometimes in the healthcare world, it can be easier to understand the needs of someone in a wheelchair. The mental and physical challenges for a ‘walker’ can be much less obvious, sometimes resulting in reduced help and understanding. Here we take a look at how to manage some of the common physical changes experienced by ageing SCI walkers.

Physical changes ageing ‘walkers’ may experience include:

1. Wear and tear on upper limb joints and knees

2. Changes in bowel and bladder function

3. Changes to skin integrity

4. Fatigue and general weakness

5. Spasms

6. Pain (and sensation)

1. WEAR AND TEAR ON UPPER LIMB JOINTS AND KNEES

Simple steps to reduce the impact of wear and tear on your joints as you age include:

• Have regular reviews with a physiotherapist who can suggest exercises to help you stay flexible and avoid stiffness, which in turn will help to prevent injury

• Use the correct walking aids and splints; are they still fit for purpose? Old, broken or inappropriate aids may be doing you more harm than good

• Keep your weight even and steady so as not to put any undue pressure on certain parts of your body

• Don’t ignore abnormal levels of pain. Changes in pain levels or new areas of pain may be warning you of important changes so book in to see your doctor

2. CHANGES IN BOWEL AND BLADDER FUNCTION

Changes in bowel and bladder function may take years to develop and you may not have expected changes to occur. Don’t delay seeking medical advice and the other relevant support available to you such as:

• Your nearest Spinal Cord Injury Centre or specialist neurological centre

• Continence Specialist Nurse, based at your GP Surgery

• SIA Specialist Nurse Team which you can access online directly or through the Advice Line: 0800 980 0501

3. SKIN MANAGEMENT

Ageing skin loses elasticity, becomes thinner, and has reduced blood supply, which can add to the risk of developing pressure ulcers. It is vital to remain vigilant, prevention being better than cure. You may need to purchase specialist pressure relieving equipment, which is particularly important when ‘travelling long distances. You can seek advice on equipment, for example a cushion, and skin management from:

• Your nearest Spinal Cord Injury Centre

• Tissue Viability Nurse, based at your GP surgery

• SIA Specialist Nurse Team

4. FATIGUE AND GENERAL WEAKNESS

This may be due to a loss of strength and muscle function. Do take fatigue seriously, it may be associated with how long you have been injured and it probably won’t go away on its own, so it is worth trying to determine the underlying cause. You could consider using a wheelchair sometimes, both for conserving energy and for your safety, especially when in crowded places. Taking the right type and quantity of exercise can reduce fatigue. You may need some professional advice and guidance but yoga and Pilates may be good starting points.

5. SPASMS

Spasms can increase or decrease with age and can contribute to falls and injury in SCI walkers. If you are experiencing an increase and intensity of spasms, this could be an indication that something is going wrong and you may find medication, physiotherapy and aids which may help. Seek advice from your SCI centre or GP.

6. PAIN (AND SENSATION)

Many people living with a spinal cord injury, whether a ‘walker’ or a wheelchair user, live with a degree of pain, which can be chronic or intermittent and may increase or decrease with age. Either way pain is an important warning sign that something may be physically wrong, so it is not to be ignored. An important note for walkers with part or full movement but who may have impaired sensation, the potential for injury to joints, limbs and skin is increased as you may be unaware of an injury having occurred. Do visit your nearest SCI centre or GP if you experience changes to your pain and sensation levels and be vigilant of injuries occurring.

Not to be ignored are the psychological changes you may go through. You may not have sought psychological support when you were first injured, but that doesn’t mean you wouldn’t benefit from it now if you feel things have changed. You may experience mood changes (possibly caused by hormonal changes as you age) or bouts of depression. Try to engage with family and friends to support you and seek appropriate professional treatment.

FORWARD FOCUS

MINDSET COACHING

BE YOUR BIGGEST CHEERLEADER P26

SO, THERE I WAS…

…with my wife and two of her girlfriends sitting down and feeling ‘Hungry Like the Wolf’. Where’s this going, you’re probably thinking? Just bear with me...

We had a table booked at a very wheelchair-friendly Argentinian restaurant at the O2 called Gaucho. The music was a bit loud and the decor a little too kitsch but the steak-based menu was excellent. After several courses and some decent wine, supper wasn’t cheap but it was a one in a million evening so we ‘Save a Prayer’ (a classic) and settled the bill.

My wife, Emma and Henrietta are all absolutely lovely people but mildly psychotic when the subject of one of the greatest bands ever to rock a nation, the ‘Notorious’ (no-no-notorious) Duran Duran is mentioned, especially when we’re about to watch them up-close and personal!

The concert itself was magical, with the songs of our youth belted out in just the

same way as they were back in the ’80s. It must be more than just ‘The Reflex’ (thank you) of professional rock n’ roll stars that can still get 20,000 middle-aged men and women trying to recapture their youth. You certainly do get fantastic seats as a Blue Badge holder in theatres and concert halls, as me and my fellow 199 wheelchairusers found! We were so close I’m almost sure a certain Mr Le Bon waved at me!

Huge screens reflected the exuberant faces of the audience as we all sang along to each ingrained anthem! With such (*clears throat*) ‘Wild Boys’ as Nick Rhodes, John Taylor and Simon Le Bon, there were, unsurprisingly, many ‘Girls On Film’ (do you see what I’m doing yet?) as the cameras swung across the vast auditorium.

And all too briefly, with an encore, it was over.

Those of you who have an elemental grasp of English geography know that the Docklands is a bit of a distance from West Sussex and for all of us to return home was going to require the very careful ministrations of the London Underground. Even as efficient as it often is these days, 20,000 is a lot of people to filter into individual carriages and with everybody keen to get home and only going into one North Greenwich tube station entrance, progress was bound to be slow.

This is where we inadvertently played our trump card as I looked pitifully at one of the security guards. He immediately took me under his wing and we circumvented the mile-long queue and with glances like ‘A View to a Kill’ (I can’t stop now) directed at our little troop, we all sailed past the patiently queuing throng.

‘Is There Something I Should Know?’ (the last one, I promise) you could see everybody thinking until they saw me frantically pushing my little wheels as fast as I could and staring innocently forward. As we left ‘Planet Earth’ (sorry) and descended into the bowels of London’s underground system, this evening turned into one of life's little victories. And I even, as always, got a seat on the way home!

EDWARD BRIDGER-STILLE SIA member

Thursday, 16 November

2023 sees the next Stop the Pressure Day take place – an annual event to raise awareness of the impact of pressure ulcers. Here, we take a look at some of the basics of pressure ulcers and what you can do to minimise the risk

As you will read on page 46 of this issue, SIA have set out new s trategy goals for the next seven years . One of the three key goals is to work towards a health and care system that works for people who live with spinal cord injury.

With this goal in mind, SIA will, as always, be supporting the 2023 Stop the Pressure Day on Thursday, 16 November; creating awareness to work towards a healthcare system that is educated in pressure ulcers and fully understands the complications that can arise from misdiagnosed or poorly treated ulcers.

And with an estimated 80% of people living with SCI developing a pressure ulcer in their lifetime, the need to raise awareness is paramount.

Here we share some basics of how to minimise the risk for yourself.

STOP THE PRESSURE

WHAT ARE PRESSURE ULCERS?

Pressure ulcers happen when your skin is put under pressure for extended periods and your blood, which carries oxygen and nutrients around the body, can’t get to that area, creating a build-up of waste products. This can lead to breaks in the skin and serious infections if left untreated.

The top three risk factors for pressure ulcers are:

• Pressure on the skin

• Damaged skin

• Poor self-care

Some things you can do to prevent pressure ulcers:

• Get into the habit of checking your skin before getting up and on returning to bed – meticulously checking your skin once or twice daily should become part of your routine

• Ensure you are in the correct seating position in your wheelchair and move often. An occupational therapist can help with this, and some specialist spinal injury centres run seating clinics

• Lift and pressure relieve regularly

WHERE TO GET FURTHER ADVICE:

How to identify an ulcer:

• Look for reddened areas (or purple on darker complexions), blisters, flaky skin, cracks, swelling, bruises, septic spots, shiny or hot areas, calluses and wrinkles

• Check for indentations from seams or elastic binding

• Look for hard or jelly-like lumps over bony parts of your body

• Watch for areas that have been broken in the past – scar tissue breaks easily

• Check for pus forming or redness around your fingernails and toenails

• Pain on part of the skin if you have sensation

What you should do if you notice a red/purple mark:

• Take bed rest at once and relieve pressure from the affected area

• Take pictures of the pressure mark and email them to your spinal centre healthcare professionals so progress can be monitored

• Contact a professional such as a district nurse, GP or outpatient department nurse or liaison nurse at your spinal injury centre

• Eat a high protein diet and drink plenty of healthy fluids

You can read more information about ulcers on the SIA factsheet here: tinyurl.com/pressurecarefactsheet or by using this QR code: Look out for more information on our website and social media channels about how to get involved in Stop the Pressure Day

GIVING BACK

Volunteering for SIA’s support network is rewarding for everyone involved. Here

‘VOLUNTEERING HAS TAUGHT ME THERE’S A LIFE TO LIVE’

Peta Barratt, 60, is based in Buckinghamshire and began volunteering in 2018. She sustained a T10 complete spinal cord injury in May 2016 after falling from her loft at home.

1 1

What role has SIA played since you became injured?

Whilst I was rehabilitating at Stoke Mandeville, I formed a relationship with Carol Barraclough [one of SIA’s regional support managers] who visited the unit weekly. She was such a wealth of knowledge; my husband was especially grateful for her help and advice. She was just such a friendly person to talk to who ‘got it’. 2 2

being, I needed to be kept busy. In 2018 she pointed me towards a volunteering role with SIA. I considered this could be an opening to a job once I’d gained sufficient experience. However, once I started volunteering, I fell in love with the role and the commitment was just perfect for me. I no longer sought a ‘paid’ role. 3 3

What does your role involve?

Why volunteer?

After my accident I was unable to continue working. I’d talked to Carol about getting a job but felt I had no relevant qualifications. I wasn’t someone to admit defeat. For my mental health and well-

Primarily visiting Stoke Mandeville once weekly to offer peer support to newly injured patients. I am on the disability focus groups for both Luton and Stansted Airports and visit patients at the Royal Buckinghamshire Hospital. Additionally, I do home visits and telephone calls to ex-patients.

three volunteers share what this unique role means to them

Peta says that as a volunteer, simply listening can help people the most

4 4

What’s the most meaningful part for you?

Hoping I’ve helped someone. I don’t pressure anyone to talk; they just talk about their feelings, frustrations or anxieties. Whatever it may be, they get the time to vent to someone who understands or ‘gets it’. Most of the time it’s just someone listening, that’s the bit that helps most. Not judging just listening.

5 5

Are there any challenges?

It’s hard digesting the sadness patients reveal. I find a good dog walk and glass of wine help me move on. I need to process the stories to be able to move on but occasionally it’s too difficult. Some stories stay with you forever.

6 6

What would you say to someone considering volunteering for SIA?

Volunteering can lead to employment if that’s what you’re searching for. However, there’s nowhere I’d rather be than with other wheelchair users. We’re a community. Volunteering has taught me that a fulfilled life can be achieved and can be helpful for those who can’t return to their careers.

‘I WANTED TO GIVE BACK’

Daniel Colley, 27, from Shropshire has been volunteering for SIA since April. He sustained a C5 incomplete spinal cord injury following a road traffic accident in 2015.

1 1

What role has SIA played since you became injured?

It’s played a massive part. I always remember [SIA support network manager] Gary Dawson visiting me just after I was injured. Seeing a person in a wheelchair for the first time was quite emotional but also helpful and inspiring. Gary would visit the spinal unit weekly and it was great having someone in a similar situation I could bounce problems off. I have a very loving family but someone who could relate to my injury really helped.

2 2

What compelled you to become a volunteer?

I always knew I wanted to give back, so I waited until I'd gained some valuable experience living with my injury. Having a suprapubic catheter and a colostomy bag, being a father and other experiences since my injury – I hope by sharing my stories I can help others through their injuries and journeys.

3 3

What does your role involve?

I’m the first point of contact at Oswestry with newly injured patients which I thoroughly enjoy. I will also be running a monthly support network cafe in my local

area for people within the Telford, Shrewsbury and Oswestry area.

4 4

What is the most meaningful part of volunteering for you?

Being able to give back what I’ve received and sharing experience gained through my injury. I want to show that a spinal cord injury is not the end of your life, it’s the start of a new life and that can be fantastic and meaningful. A spinal cord injury is life changing and can be hard – there are real adversities to face. But you can get through these hard times to experience things you might never have as an able-bodied person.

5 5

What are some of the challenges?

Juggling personal and family life can be challenging. I need to make sure I’m back in time from Oswestry to pick my daughter up from school and I have skin problems to manage. All of it is manageable if I plan well.

6 6

What would you say to someone considering a role as a SIA volunteer?

Helping people who are in a dark place after their injuries and showing them life as a wheelchair user can be fantastic is really worthwhile.

Daniel (pictured with daughter Sienna) began volunteering earlier this year

Jonathan Makin, 35, lives in the Ribble Valley, Lancashire and has been a SIA volunteer since 2020. He was involved in a car accident in 2008 and sustained a T4 incomplete spinal injury.

1 1

What role has SIA played since you were injured?

Since day one, SIA has been there. In the early days it was a source of useful information about spinal cord injury (SCI). Now, 15 years on from my injury, SIA is still a great place to go to for advice and information.

2 2

What compelled you to volunteer?

Two words...Gary Dawson [one of our support network managers]. Gary really helped in the early days of my injury and when the opportunity to become a support network volunteer came up, I thought if I could help the way Gary helped me then I'd love to give it a go. It's been hard work doing things virtually over Teams or on the phone during the Covid-19 pandemic and I'm now enjoying getting out and meeting people in person.

3 3

What does your role involve?

I provide support to people with SCI, whether they're newly injured or further down the line. I go to local community support groups in Preston and Manchester and chat with people about SIA services. I also get referrals to see people on a one to one basis in the North West of England. I also visit my local spinal injuries centre in Southport, and provide support to inpatients there, like Gary did for me, all those years ago.

4 4

What’s the most meaningful part?

Seeing the relief when someone realises they're not the only person to have experienced certain problems. Or when it finally clicks that living with SCI isn't the end of the world and they can still live a fulfilled life.

5 5

What are some of the challenges?

Managing my time. I'm selfemployed and run my own business, which naturally requires a lot of my time. It's just a challenge though and forces me to become better at time management.

6 6

What would you say to someone considering a role as a SIA volunteer?

What are you waiting for? It's a wonderful charity with amazing people. If I can find a day a week to volunteer in my busy schedule anyone can. The feeling you get knowing you've made a difference to someone struggling to come to terms with their injury is AMAZING!!

For more information on volunteering for our support network, please visit spinal.co.uk/get-involved/ volunteering/

‘KNOWING YOU’VE MADE A DIFFERENCE TO SOMEONE WHO IS STRUGGLING IS AMAZING’

Jonathan began volunteering virtually during the Covid-19 pandemic and now enjoys meeting people in person

DISABILITY EMPOWERMENT:

MINDSET COACHING

Shanice Green, 29, from Essex, has a rare neurological condition, arnold-chiari malformation, as well as syringomyelia and scoliosis. Here she shares her astonishing journey from childhood operations to mindset coaching

At the age of seven I had my first of a long list of surgeries. By the time I was ten years old, I'd had 11 operations and had become paralysed from the neck down due to a blood clot that formed at the base of my brain.

Thankfully after another surgery and successful removal of the clot, I am no longer paralysed, but still a wheelchair user.

Growing up as a teenager in a wheelchair wasn’t easy, I learned to grow thick skin but inside I had limited belief in myself – I felt insecure, like I was a burden, never fitting in and uncomfortable in my own skin.

THE LUCKIEST PERSON ALIVE

At the age of 18 I had my first child, something I thought would never happen. I felt like the luckiest person alive, but I felt unworthy for such a blessing to enter my life and the selfdoubt immediately set in. Could I be a parent? Could I give my daughter all that she needed? Would she wish that she had an able-bodied mum? But I had my daughter, my beautiful little girl. We adapted and grew together and less than two years after having my baby girl, I had a beautiful baby boy, and I am so grateful each and every day to be their mummy.

Shanice Green, empowerment mindset coach

Despite the joy, there was pain, both mental and physical. Less than two months after I had my daughter, my hero, my grandad, suddenly passed away and I lost myself. That was compounded during my second pregnancy when I was told that there wasn’t much left my neurosurgeon could do for me.

I remember the day that changed everything – I looked at my daughter and son and something inside of me just clicked – I had a fire in my belly and I knew I had to do something. However long I had left on this earth, I was going to work and fight to give my babies everything they needed for their futures.

I realised that the way I had gotten through my many life obstacles, gotten through the days where I couldn’t lift my head off the pillow, the days where doing simple daily tasks was a challenge, was through the power of my mind.

And so began my journey to become a disability empowerment mindset coach, helping individuals to create a fulfilling life and access their inner power through their mind and belief systems.

Life isn’t all rainbows and fairies, and some days can be tougher than others. I still have days where I want to scream from the top of my lungs, but I can now see the beauty of what’s around me, and every single day no matter how much of a challenge it may be, I always express my gratitude, because for now I am alive and I have so much to live for.

BE YOUR BIGGEST CHEERLEADER

Becoming a transformational and empowerment mindset coach completely changed my life and helped me realise there was a reason I was given the life-changing obstacles that I was given. Helping my clients transform their anxiety and self-esteem issues and seeing them become their own biggest cheerleader means so much to me.

So, whatever your disability, here are five easy tips to help you start your empowerment mindset journey:

1

Set an alarm on your phone three times a day and when it goes off, notice your five senses. What can you see, hear, feel, smell and taste? By doing this it brings you back to the present moment and helps you become grounded and mindful of your surroundings.

2

Ask yourself what are you grateful for?

It might be big things like your partner or children, or small things like the electric that keeps you and your family warm. Regularly naming some of the things that make you grateful in your life has a powerful and positive effect on your mental health.

3

Journalling is a great way to help you have a positive outlook on life. Writing down how your day has been is often a good place to start. Journalling has been recognised as an effective way to reduce stress, help with depression and anxiety and focus your mind. Self-reflection can also help you get to know yourself better.

4 Create positive daily habits. Whether that be to read a few pages of a book, or listen to upbeat music, meditate, get dressed each day. It can be anything that fits into your life. Creating routine and

positive daily habits can bring about a sense of calm and reinforce a sense of control and ownership of your own life.

5 Challenge your negative thought patterns. Techniques include saying three things you love about yourself for every negative thing you think or say about yourself. Alternatively, each time you think a negative thought about yourself, challenge it with logic, fact and truth; say to yourself, is that true? What would be the benefits if I didn’t believe that to be true about myself? Challenging your negative thought patterns is proven to have a positive effect on your mental health.

FURTHER INFORMATION

If you’d like to find out more about my work, please head over to wheelempower coaching.com or contact me on wheelempower coaching@gmail.com

Note: The author is a mindset coach, not a qualified counsellor or psychologist.

© ADOBESTOCK

DAILY LIVING

CONQUERING EVERYDAY MOUNTAINS

Our #EverydayMountains competition was a great success. Here we meet one of the lucky prize winners

Emma Cawood, 46, from Leeds, West Yorkshire, loved the idea of taking on a big challenge like Mount Snowdon when she saw the mountain trike was the star prize of our #EverydayMountains competition, but didn’t think in her wildest dreams that she’d win!

Emma says: “I was absolutely thrilled. I rang my family and just kept saying it couldn’t be true because things like this don’t happen to me. We all enter competitions at some time in our lives but never really think we’ll win!”

Diagnosed with cauda equina syndrome (CES) in February 2020, Emma spent four months in hospital during the first Covid-19 lockdown. There was no visiting allowed for most of that time, which was incredibly hard for Emma, husband Phil and their sons Max, 21 and Theo, 15.

For Emma, having the trike will open so many more opportunities. She explained: “It means I can access more places, spend more time with family doing fun things and take on more challenges myself. I’m very excited about what I can get up to in the future.”

Our vice president Martin Hibbert presented Emma with her prize. She said: “Having followed Martin’s story, it was great to meet him. I don’t think I’ll ever be as ambitious, but you never know. If someone had told me three years ago, I’d be planning a climb up a mountain, I would have laughed.”

Now she has the trike, Emma plans to climb Mount Snowdon next year. She said: “I’m really looking forward to pushing myself. Since my injury I’ve found that setting goals is my coping mechanism. However big or small, these goals are my mountains.

THE #EverydayMountains COMPETITION

When SIA’s vice president, Martin Hibbert, scaled Mount Kilimanjaro last year, he proved that, with the right support, disabled people can literally climb mountains. To inspire others to tackle their own personal challenges, we launched the #EverydayMountains prize competition to provide accessible equipment (including the mountain trike Martin used), support packages, and experiences to people with spinal cord injuries (SCI).

The prizes

We had an incredible 200 applicants who shared stories of how these prizes would enable them to go outdoors, spend time with family, improve their fitness, or simply access equipment. A panel of judges (pictured right) selected our lucky winners. Thanks to our generous sponsors for helping make this possible – Bolt Burdon Kemp, Fletchers Group, HCC solicitors and Key Group. Thanks also to our prize donors, including Williams Racing, Leigh Day, VIM Healthcare, Minster Law, Active Hands, BundleBean, PYC mobility, Josh Landmann, Dustine West, and Elevated.

“In the beginning these were small – like sitting up without falling over or being able to move around in a wheelchair without dragging objects. They progressed to going out alone, learning to get up and down kerbs and transferring without a sliding board.

“My goals are not as frequent now, but there are still many challenges I’d like to try. I will keep striving to push myself!”

Meet other #EverydayMountains winners in the winter issue of Forward

SKILS L

FOR LIFE

Want to learn wheelchair skills? Try TikTok or YouTube!

Although there are more than a million wheelchair users across the UK, training in using a wheelchair isn’t offered by the NHS.

Having been a wheelchair user for the past 17 years following a motorbike accident, Pete Donnelly understands the importance of learning wheelchair skills and the impact these have made on his life. It’s why he set up a social enterprise, The Wheelchair Skills College – to ensure every wheelchair user has access to these vital skills.

Pete says: “Giving someone a wheelchair is only the start of supporting someone with mobility issues. Ensuring that they have the skills to use the equipment is critical.”

In the latest development of services offered by The Wheelchair Skills College, people can now access nearly 30 videos on YouTube and TikTok to get an insight into how to use their wheelchairs.

Pete explains: “I’ve always taught wheelchair skills in person. I believe that is by far the best way to do it. The reality is that developing that kind of offer will take years and people need access to these skills now.”

Wheelchair skills are techniques people can use to do more in their daily lives. Basic skills start with pushing and turning, and as people progress, they can learn how to carry a cup of coffee or open doors while using their wheelchair.

The videos demonstrate wheelchair skills across four difficulty levels: beginner, intermediate, advanced and expert. The videos use a natural progression system that allows people to push themselves at a comfortable rate, so building confidence and independence while doing it.

Pete says he’s been delighted by the response to the videos. He adds: “It’s been fantastic to get such positive feedback so early on after starting my channel. People say they’ve got so much from seeing skills they didn’t know about before. The bite size format has got great feedback. Most videos are less than two minutes long.”

Feedback on the YouTube video for pushing forwards reads: “Thank you so much for these videos! I sat and watched all the basic level vids yesterday and today I've been out shopping by myself. I tackled slopes and doors successfully.”

Pete already plans to expand the current video library. He says: “Videos that are online are the core set of wheelchair skills. We’re only scratching the surface and there’s lots more to come.”

FURTHER INFORMATION

To access the wheelchair skills videos on YouTube or TikTok, visit wheelchairskills.org/YouTube or wheelchairskills.org/TikTok

More information can be found on The Wheelchair Skills College here: wheelchairskills.org

© PEDRO TORRES

Pete Donnelly has created super convenient, bitesized wheelchair skills videos

AWESOME A PPS

Planning an outing with accessibility in mind can make or break a trip. With apps available to find accessible restaurants, locate toilets and parking, and loads more besides, we asked SIA staff to share their app recommendations so you can feel confident heading out and about

RESTAURANTS / VENUES

Sociability (sociability.app)

Sociability encourages users to find, tag and share accessible places so others can enjoy them too. On a mission to give peace of mind to disabled people everywhere, they cover all the brilliant local venues you want to visit; cafés, restaurants, bars, clubs and more.

AccessAble (accessable.co.uk)

AccessAble is here to take the chance out of going out. Find wheelchair friendly venues or check out disabled access and facilities in venues across the UK and Ireland, including shops, pubs, restaurants, cinemas, theatres, railway stations, hotels, colleges, universities, hospitals and more.

Snowball (company.snowball. community)

Snowball will give you global information on disabled friendly places of business and what disabled facilities are available. The user can then choose which bar, restaurant, shop, cinema, corner shop, tourist attraction, supermarket or coffee shop they can visit without being disappointed or turned away.

HELP UPON ARRIVAL TOILETS AND PARKING

See Around Britain (seearoundbritain.com)

An app to help disabled people and visitors plan trips. See Around Britain includes more than 500,000 photographs of facilities such as toilets, access information and disabled parking at points of interest. View the suitability and accessibility before you plan to visit or arrive at the venue.

WheelMate (coloplast.com/ products/bladderbowel/wheelmate)

WheelMate gives you an instant overview of your nearest wheelchair-friendly restrooms and parking spaces on an interactive map. Wheelchair users add and verify every single location themselves, ensuring it works the way it should. It has more than 35,000 locations across 45 countries.

Welcome (wel-co.me/app)

Welcome aims to give you the confidence that your specific needs will be understood and met upon arrival at every participating destination. Set up your personalised accessibility profile and search and select a venue. The venue gets notified of your visit and receives an overview of how to interact appropriately with your needs.

EXERCISE

Blue Badge Parking (bluebadgeparking.com)

BlueBadgeparking.com is a worldwide map and database of disabled parking places. Through the power of crowdsearching, Blue Badge Parking are building a comprehensive database of disabled parking locations. Search a particular area and print off your own map or download the information to your SatNav.

Fuel Service (fuelservice.org)

Helping disabled drivers find and get assistance refuelling their cars, the Fuel Service app will confirm which nearby stations can offer you assistance. You can confirm your arrival via the app and get confirmation of how long before an assistant will be out to help refuel your car.

Accessercise (join.accessercise.com)

A complete fitness app offering a directory of accessible gyms and fitness facilities as well as an exercise video library where every exercise is performed by someone with the same impairment as the user. Accessercise are committed to making it easier for people with impairments to exercise without judgement or difficulty.

PETS AS THERAPY

Furry friends don't just look cute! Having pets can help boost your mental health, according to experts

As someone with spinal cord injuries (SCI) who has also had bouts of depression, I know no matter how I feel, my cat Leonora will be with me, pressing her furry body against mine in an act of feline solidarity.

Pat also knows that feeling. He has a (C3, C4) incomplete SCI with a brain injury and has three dogs, Golden Retriever Willow, Cocker Spaniel Megan, and Betty, a Patterdale Terrier.

Pat said: “At night, and when I take a nap, I put their comfort above mine. So, even though they snore and take up most of the bed, I find it weirdly relaxing, knowing they’re comfortable. I also find I can pick up their emotions. If they’re calm or excited, so am I.”

Just how much these animals mean to owners like Pat has been researched, with evidence that pets can help those with mental health needs who have longterm conditions in terms of managing emotions and enhancing social identity.

This is at the core of charities such as Pets As Therapy (PAT). Here, volunteers and temperament-assessed pets visit a wide variety of settings like schools, nursing homes and hospitals, including those that look after people with SCI.

Matthew Robinson from PAT said: “PAT teams bring a smile to people’s faces and allow them to immerse themselves in the moment, no matter what might be going on in their lives.”

Similarly, Support Dogs is a national charity where dogs can be trained to assist their owners in daily life. Disability assistance/support dogs can increase independence for the owner, keeping them active and safe. Danny Anderson from Support Dogs said applications from those with a SCI would be very welcome. He said: “Go to our website and check the criteria. You will need to have your own pet dog aged between one and two years of age.”

Dr Helen Brooks, senior lecturer in mental health at the University of Manchester, who led the research in this area, said: “The results have demonstrated the intensiveness of connection people report with their companion animals, and the different ways in which pets help to manage a mental health condition, particularly in times of crisis.

“These included pets providing emotional support, helping their owners to manage symptoms when they arose and providing their owners with a sense of purpose and meaning in life.

“Participants also felt that pets encouraged routine and exercise which was beneficial to their mental health and pets were considered important in improving existing and developing new relationships with other people.”

Stephen says having Crumble helps him get out and about.

RUTH F HUNT

Mental health columnist

At night, and when I take a nap, I put their comfort above mine. So, even though they snore and take up most of the bed, I find it weirdly relaxing, knowing they’re comfortable

Stephen, who has (C5/C6) incomplete SCI, has had his support dog Crumble for the past three years. He said: “One of the major things with having a disability is being stuck in the house. Having a dog gets you out and about, and you must go for a walk twice a day in all weathers, whether you want to or not.”

Whether your interaction with a pet is direct, through a scheme, or friends or family members, Dr Brooks says this could give a mental health boost.

Brian, who has a (T9) complete SCI, says his spaniel, Barney, brings him so much joy – despite the fact he runs off with his socks and hides them!

A pet can provide solidarity, aid relaxation, give assistance and bring joy. They put in that crucial support alongside medical help (when required) with this partnership especially helpful for those who have mental health needs, as well as SCI.

Signing off with a pen and a paw. Ruth

For more information on therapy and support dogs, visit petsastherapy.org and supportdogs.org.uk

To read Dr Helen Brooks’s research in full, visit: bmcpsychiatry. biomedcentral.com/ articles/10.1186/s12888018-1613-2

Willow, Megan and Betty snore and take up most of owner Pat’s bed, but he wouldn’t be without them.

Barney is a serial sock stealer – but his owner Brian forgives him!

COSY TASTES OF AUTUMN WITH THE 2 SCI CHEFS

CHEF JON SAYS:

It’s been five years since I got my SCI, and upon reflection I see that my passion for cooking and my determination to get back to the kitchen has helped massively with my recovery, even now, all these years later, offering a distraction from the daily trials of a spinal injury. I look forward to thinking about and planning every meal from breakfast to tea. So, what’s my perfect start to an autumn day? When I get fed up of cold cereal but not quite ready for porridge I prep some overnight oats. Try the toffee apple inspired recipe opposite. After breakfast, I’m already thinking about meals for the rest of the day.

Mackerel pasta is a perfect dish for when summer crosses over into autumn, warming but still light. Smoked mackerel fillets are readily available in most supermarkets now; my personal favourite is the peppered variety.

And I want to top it all off with a beloved autumnal family recipe: my Nana's Ginger Cake. It’s uncomplicated and delicious – the perfect combination! I've added a richer tone with black treacle. This lovely loaf gets better over a few days so you’ve got plenty of time to try it served plain with a cuppa, spread with butter or slathered in custard.

Chef Jon’s Warm And Light Mackerel Pasta –serves 3-4

Ingredients

• 275g x pasta

• 200g x spinach

• 200g x cream cheese

• 200g x smoked mackerel fillets, skinned and flesh flaked into large chunks

• 2 tbs x horseradish

• ½ tsp x black pepper

• 90g x cheddar cheese, grated

Jon’s Breakfast Basic: Toffee Apple Inspired Overnight Oats – serves 1

Ingredients

• ½ x cup oats

• ½ x cup milk

• ¼ x cup plain yogurt

• ½ tsp x vanilla extract

• 1 x small apple, chopped

• 1-2 tsp x maple syrup, golden syrup, honey or toffee sauce (to taste)

TOP TIP: TOP TIP:

Add a sprinkle of granola, nuts or seeds for crunch

• ½ tsp x cinnamon (to taste)

Optional extras

• 1 x pinch of sea salt

• 1 x teaspoon chia seeds

• 2 tbsp x chocolate chips

• 1 tbsp x peanut butter

• ¼ x cup fresh berries

Method

In a screw top jar, start layering with oats, then apple, and drizzle yogurt, vanilla extract and syrup/ honey. Put top on, then leave in fridge overnight. Give it a good stir in the morning and enjoy!

Method

• Cook pasta to al dente according to packet instructions

• Preheat oven to 180°c

• Drain pasta, reserving a cup of the pasta water

• Stir in cream cheese, horseradish and pepper

• Add some of the pasta water if the mix seems dry

• Fold in the mackerel and spinach

• Place pasta mix into a large ovenproof dish

• Sprinkle over the cheese

• Bake for approx. 20 mins

As we move from the vibrancy of summer to the cosy quiet of autumn, try these homely, delicious dishes and enjoy the flavours of this restful season

Nana Lucy’s Original Ginger Cake

Ingredients

• 4 oz x marg

• 3 tbs x golden syrup (or 2 tbs x golden syrup and 1 tbs x black treacle to make it more rich)

• 200g x self raising flour

• ¼ pint / 5 fl oz x boiling water

• 1 level tbs x bicarbonate of soda

• 3 level tsp x ground ginger

• 4 oz x caster sugar (2 oz brown and 2 oz white)

Method:

• Pour the boiling water over the marg and syrup, stir until melted

• Put the rest of the dry ingredients into a large bowl, add the syrup mixture and stir until smooth

• Line a loaf tin and pop in a fan oven at 160°c for approx. 40min, check with a skewer, if it comes out clean it’s ready!

CHEF TONY SAYS:

At the end of the summer I was busy moving house. It’ll come as no surprise to you all that the kitchen is my favourite room – it’s so much bigger than my old one and everything in it is adapted so I am really looking forward to cooking up a storm in autumn. One thing I can’t wait to cook in it is a big bowl of beautiful chilli to keep the autumn chills at bay. Below is my favourite recipe, guaranteed to keep you cosy all autumn long.

AUTUMN TIP: AUTUMN TIP:

Seasonal squash – if you can pick them yourself, great, if not, the local shops have plenty at this time of year. Air fry wedges, blend into soups or pop in your pies! Squash keeps longer than your average veg too, so you save on wastage.

Ingredients

• 500g x mince (any type)

• 3 x cloves garlic finely diced

• 1 x yellow onion diced

• 1 x red onion diced

• 1 x can kidney beans (washed and drained)

• 1 x dessert spoon of tomato paste

• 50g x sundried tomatoes

• 1 x tin of chopped plum tomatoes

• ½ x red, yellow and green pepper finely diced

• 1 tbs x chilli powder

• 1 tsp x dried chilli flakes

• 1 tsp x ground cumin

• 1 tsp x cocoa powder

• 1 tsp x smoked paprika

• Splash of red wine vinegar

• ½ x square of darkest chocolate you can find

• Oil to brown

• Salt and pepper

• Nacho chips

• Sour cream

• Hummus

• Chopped fresh tomatoes for garnish

• Chopped green onions

• Grated cheese

Method

• Mix all spices together and set aside

• Preheat oven to 175°c

• Heat oil in pan and brown off the meat

• Remove meat and fry the red and yellow onions until translucent (5 mins)

• Add in garlic and cook for a further 3 mins

• Add in peppers and stir

• Stir in tomato paste

• Stir in the can of chopped tomatoes

• Half fill tomato can with water, swish around and throw that in the pan

• Put the meat back into the pan

• Add the mixed spices and cocoa powder and give it a good stir

• Add in the washed and drained kidney beans

• Stir well, ensuring mix is slightly wet (add more water if not)

• Place the full mixture into a crock pot or oven proof pan with lid

• Place in oven for 75-90 mins

• Stir in the square of chocolate until it melts

I like serving poured over nacho chips with sour cream or simply with rice but why not try a Mexican lasagne? Layer up the chilli mix, pasta sheets and bechamel sauce, add grated cheese and bake in an oven proof dish for 60 mins.

Tony’s Chilli

As Forward editors, we often get told how much you enjoy reading about accessible holidays. So, heading up our new holiday review pages is the beautiful city of Seville in southern Spain. Join SIA’s support volunteer Graeme Rudd as he shares his experience of this charming and surprisingly accessible city

HOLIDAY REVIEW: Seville

Earlier in the year, my wife and I enjoyed four days, five nights in the beautiful city of Seville. After a mid-evening flight from Gatwick, we took a short 15 minute taxi ride into the city centre (25 Euro) where we had booked into the Soho Boutique Hotel on Avenue de la Constitucion – almost right opposite the magnificent Cathedral de Seville. We had an adapted room, which was fine, albeit the main room was slightly on the small side, with a good bathroom.

The following morning, and for the whole duration of our stay, it was wallto-wall sunshine, not a cloud to be seen and mid 20s to low 30s. Perfect.

Our first impression was the beauty of the architecture, mostly classical but

elsewhere super contemporary, the cleanliness of the streets, the fantastic cafe/bar/restaurant culture and the whole buzz and vibe the city had.

Terrain wise, the streets and paths were much better than I’m used to in York. I even spotted a dedicated van and team of guys working on “paths and roads maintenance” or the Spanish equivalent, “pointing up” the odd gaps in the paths’ surfaces. That said, this was around the main tourist sites and the back streets (barrios or old town) were more cobbled, where ideally a FreeWheel/ Batec/Triride would have come in handy. I didn’t bring my Freewheel but managed to flip or wheelie over any undulations where necessary. It was definitely worth the effort. Crucially, the city is really flat, so no steep inclines to contend with.

Day 1 – A short pushing distance from the cathedral was the Royal Alcazar of Seville, a palace with large, impressive gardens. Access was very good to most if not all areas, and surprisingly it was free for both of us, rather than just the usual “carer” concession. Cheekily make your way to the front of the queue and you’ll just get waved through.

TOP TIP:

Day 2 – We made our way to the Plaza de Espana, which really was quite spectacular, and also free to get into! It had extensive gardens which, even to me, not a huge gardens fan, were definitely worth the couple of hours we spent there. A bonus was an outdoor flamenco dancing show which was very entertaining with crowd participation encouraged. However, I know my limits, and flamenco in a wheelchair is not for me.

We broke up each day with numerous stops at quaint road side cafes for breakfast, tapas, coffees, the odd beer/wine or two and a restful time people watching. Similarly we ate out every evening at either a nice restaurant we’d spotted during the day, or one that had been recommended by the hotel. Despite some being quite small, all seemed to have excellent disabled access with a dedicated disabled or baby changing type loo.

The city’s buses, trams and metro trains are all wheelchair accessible and had we had another day, we think we’d have caught the train to the coast.

Day 3 – We took the City Sightseeing hop on/hop off tour with English “audio description” via headphones. It was ok, we felt we saw much more “on foot” but it did get us to two areas of Seville which would have been too far to push – La Macarena and Triana. These were more “gritty” working parts of the city, but no less enjoyable for it, as it showed a real side of Andalucian life, which was so much more evident than on the usual “Costas”.

The city of Seville celebrates ‘Holy Week’ in March or April. The festival is spectacular but if you are looking for a quieter visit, I would suggest checking the exact dates as the city, hotels and hotspots will be rammed.

After our final brunch in our by then favourite street, we checked out of our hotel and caught a taxi to the airport.

We’ve visited many European cities over the years, and we felt Seville was possibly the most beautiful and enjoyable to date. We’d definitely recommend a visit.

Day 4 – Our last day was actually Palm Sunday, where it seemed as if all of Seville had donned their most stylish outfits, grabbed an olive or palm branch and were promenading their way to either church or some other social gathering. The streets were buzzing with chatter, laughter and clinking of glasses. One place definitely worth checking out in the evening is the roof top terrace and bar at the Querencia Hotel, which had the best views of the cathedral as it was slowly lit up in spotlights as the night progressed.

WE WANT TO HEAR FROM YOU!

Are you planning a holiday that you would be happy to review for us? Contact us at forward@spinal.co.uk

AIR TRAVEL FOLLOWING SPINAL INJURY

The Spinal Injuries Association (SIA) can advise on appropriate insurers with experience in providing cover for people with spinal cord injury.

AIRLINE FORMS

BEFORE BOOKING

Preparation is key to ensuring you have the best experience when flying, so do ask the airline about the disabled facilities for the flight before booking (some airlines do have “accessible” toilets although in reality they can be difficult to access).

If you have the option of pre-booking your seat, ask for a bulk-head seat. There is more leg room and space to carry out any manual handling such as repositioning or pressure relief. If that is not available ask for an aisle seat with arm raise facility. If this isn’t an option, check in early to request a seat with extra legroom.

INSURANCE

Ensure that you have comprehensive travel insurance to include cover for possible complications relating to your spinal cord lesion.

For example:

• Medical treatment for an infection

• Pressure area problems (skin problems)

• Repairs to your wheelchair if it becomes damaged

Make sure the airline and travel tour operator know of your disability and requirements. If you need any assistance, you will probably have to fill in an Incapacitated Passengers Handling Advice form (INCAD). You can get this form from the airline or some travel agents. It will tell the airline about any services, facilities or assistance that you will need during the flight.  Some airlines require medical clearance using a MEDIF (Standard Medical Form), of which Part 2 needs to be completed by your doctor. These forms are available from the airline and should be requested well in advance of travelling. The MEDIF form only lasts for one journey and on the dates stated on your ticket so if you alter your journey, you will need a new form.  For more information go to caa.co.uk/ media/mp3lmyyd/iata-medif-form.pdf or scan the QR code on the opposite page.

AIRLINE FACILITIES

On arrival at the airport, go directly to the Special Assistance area for support through check-in, security, passport control, and to the plane itself.

If you would like further advice, some useful contacts can be found below spinal.co.uk/ contact-our-scinurse-specialists/ accessibletravel.co.uk disabledtraveladvice. co.uk

gov.uk/transportdisabled/planes

nhs.uk/NHSEngland/ Healthcareabroad/ EHIC/Pages/aboutthe-ehic.aspx

Flying for the first time as a wheelchair user can be a daunting experience. Here, SCI nurse specialist Damian Smith offers advice on how to take the stress out of air travel

DAMIAN SMITH Spinal cord injury nurse specialist d.smith@spinal.co.uk

Once checked in, you should arrange to remain in your wheelchair until it’s time to board the plane. At the entrance to the plane you should be assisted into a narrow aisle chair, carried aboard in the chair and helped into your seat on the plane. You will usually board first and disembark last.

If there is a problem which can’t be resolved at the gate, ask for a complaints resolution officer (CRO). All airlines are required to have one at the airport. This person is empowered to act on behalf of the airlines (but may or may not be overruled by the pilot for safety reasons).

Make sure that your wheelchair is tagged on the main frame as this will go into the baggage hold. Take anything that is easily removable, such as wheelchair footplates, side guards and arm rests into the cabin for storage. Request that your wheelchair is brought to the airplane on arrival. The cabin crew can arrange this. You will then be assisted through security and arrivals.

DEEP VEIN THROMBOSIS/PULMONARY EMBOLISM (DVT/PE)

Much has been publicised about DVT/PE and it is not our intention to worry you unnecessarily but to raise awareness of the condition.  You may need to discuss blood-thinning drugs or the use of elastic stockings with your GP if you are in a high-risk group. Elastic stockings are widely available from pharmacies and pharmacists can provide advice on use and fitting.

CUSHIONS

If possible, take your cushion onto the plane to sit on throughout the flight. Do not have it stowed away in the baggage hold as it can become easily damaged or lost. Check if the plane seat is wide enough to accommodate your cushion. If it doesn’t fit, stow it away with your hand baggage and try to relieve the

pressure by pressure lifting in the seat or leaning forward and side to side.

Roho cushions will need the air pressure adjusted due to the cabin pressure at high altitude. Air will need to be removed as the plane reaches high altitude and re-inflated on arrival.

Be very careful if using a Vicair cushion. There is little allowance for the changes in pressure within the individual air pockets (take advice from your Wheelchair Services if you want to consider removing some of the air pockets while at altitude).

UPON ARRIVAL

Check that the transport from the airport to your destination is accessible for you. Try to arrange this prior to travelling to ensure you already have an agreed price.

Do you use intermittent catheters?

The Continence Care Registry (ConCaRe™ study) online research study intended to collect information from people performing Intermittent Self-Catheterisation. Your participation in this study will contribute to creating abetter understanding of the lives of people living with urinary retention.

You may qualify for the ConCaRe™ continence care registry study if:

•You are 18 years or older

•Use an intermittent catheter and self-catheterise

•You have an email address and are willing to complete online questionnaires

If you qualify, you will receive compensation, in the form of an electronicgift card, for each set of questionnaires that you complete.

Are you interested in learning more about the ConCaRe™ continence care registry study?

Please scan the QR code or visit the following webpage to learn more: https://concarestudy.com/uk-en

Forward magazine is having a refresh! We’ll still be bringing you the very best articles, real-life stories, info and news but we’ll be doing it even better!

Our upcoming new look will showcase bright, page-popping, contemporary designs, visuals and photography to really bring our articles to life.

We’ll be designing our stories so they’re easier to read and your favourite bits of the magazine will be quicker to get to.

IN OUR NEXT ISSUE

Meet SIA’s new ambassadors, including Jonathan Goodwin and Amanda Abbington

AN INTRODUCTION TO SIA NEWS

In our summer issue of Forward I briefly outlined our new and ambitious Strategy 2030, with a promise to share more details in this, our autumn issue. If you turn the page, you will find exactly that; a lovely visual summary of our seven-year plan, not just to improve the lives of double the numbers of people living with spinal cord injury (SCI) but to tackle the systemic blocks to a health and care system that works for people with SCI . It has been a lot of work to hone and refine this strategy, with a 4 0 -page plan that backs it up. I am delighted to be able to share it with you and even more excited to be started on the journey to enable more and more people living with SCI to lead a fulfilling life – a life they choose. V isit the following link or scan the QR code to see a wonderful animation explaining just what we are setting out to achieve: bit.ly/siastrategy2030 Also in the news pages, I urge you to turn to page 50 to read about the nine principles

set out by the Equality and Human Rights Commission (EHRC). The principles outline the ideas that should shape and reform social care planning, policy and practice going forwards. SIA fully supports and welcomes the nine principles and urges the government to understand and take action to implement the

important measures set out by the EHRC for adult social care. Indeed, in our Strategy 2030 as well as a goal for a health and care system that works for people who live with spinal cord injury we have a goal for a UK government and public who champion our cause

The EHRC principles will be a great guiding frame for that. It is nearly five years since I joined SIA; nearly 50 since SIA was founded by our late president Baroness Sue Masham. In my short time I have come to realise that we have, and always have had, a humanitarian cause, where people, young and old, are still, 50 years later, being failed by a lack of anywhere to turn. Almost every service needed exists somewhere, but a lack of means, a lack of knowledge and worst of all a lack of coordination, means too many – often the most in need and least well off – are failed by the system. If we can be there for every newly injured person from day one, we can support, coordinate and link everyone to better services with better outcomes. Join us in achieving our Strategy 2030.

NIK HARTLEY OBE CHIEF EXECUTIVE

If we can be there for every newly injured person from day one, we can support, coordinate and link everyone to better services with better outcomes

INTRODUCING SIA’S NEW SEVEN-YEAR STRATEGY:

2023 2030

Tens of thousands of people in the UK live with spinal cord injury (SCI) and every day seven more people will be paralysed for the rest of their lives because of damage to their spinal cord. As SIA continues to fight for the rights and needs of everyone affected by SCI, we have launched Strategy 2030 to transform the situation faced by people who live with SCI nationwide

OUR VISION

A fulfilled life for everyone affected by spinal cord injury

On Saturday, 1 April 2023, SIA launched its new seven-year strategy. Underpinned by our continued vision of a fulfilled life for everyone affected by spinal cord injury, our strategy plans are simple to state, mighty to plan and inspiring to imagine.

For 50 years we’ve been the UK’s national association for people who live with SCI. We are made up of passionate individuals, who fight for the rights and needs of people living with SCI nationwide. We have become the expert, guiding voice – for people who live with spinal cord injury, their families, for professionals and organisations in our sector and for the public, the media and the government. And that continues to be the purpose at the heart of our strategy.

OUR PURPOSE

To be the expert, guiding voice for life after spinal cord injury

OUR KEY GOALS

It is routine for people who live with SCI and their families to face inadequate or inappropriate health and care services or support. Barriers to accessing carers, transport, livelihoods and housing, and a lack of public awareness of the realities of this lifelong condition are common. Our new strategy has been built to transform the situation faced by people living with SCI. With these vital issues in mind, our Strategy 2030 centres around three transformative goals.

OUR APPROACHES

1 A HEALTH AND CARE SYSTEM THAT WORKS FOR PEOPLE WHO LIVE WITH SPINAL CORD INJURY

To achieve these ambitious goals, we have developed four key approaches, which will help us to ensure that by 2030, more and more people living with SCI will lead fulfilling lives. Lives they choose. We know what needs to be done and we know that we, in collaboration with our partners, are the right people to do it.

2 DOUBLE OUR MEMBERS ACCESSING OUR NETWORK OF SERVICES

3 A UK GOVERNMENT AND PUBLIC CHAMPIONING OUR CAUSE

OUR VALUES (guiding everything we do)

It’s going to be hard work, there is no denying that. But with our values of compassion, inclusivity, courageousness and collaboration guiding everything we do, we are ready.

We will be Compassionate …in our response to everyone who comes to us for help. We will always take a holistic approach to supporting a person and their situation.

We will be Courageous …bringing our passion, knowledge, skills and commitment to everything we do. We will always fight for the rights and needs of our members without fear or favour.

1 Provide critical health and care support for all who live with SCI –through support and advocacy

2 Coordinate a network of support services nationwide – through a national network of partners and development of local communities

We will be Inclusive …not just in who we support and who works for us, but how we work. We will always do whatever we can to serve whoever is in need, with equity, openness and respect.

And we will be Collaborative …forging an ever-stronger movement of people and organisations. We will always start and end with the lived experience and voice of our members.

3 Build vital specialised health and care expertise across the sector –through training and education, research and development and influencing policy and practice

4 Campaign for change – through national campaigns, memberled local campaigns and mobilising public engagement

NEWS IN BRIEF

POLO DAY

We were delighted to hold our first ever Polo Day with the help of some supportive contacts made during the Martin’s Mountain project. Held in July at Cirencester Park Polo Club, we were honoured to have our Royal Patron, HRH The Princess Royal, join us for the second

time this year. Guests enjoyed a three-course lunch, a game of polo and afternoon tea.

During her speech, The Princess Royal paid tribute to the enthusiasm and energy of our founder and president, Baroness Sue Masham, who died in March. She said that every time she comes to an SIA event, she sees all of Baroness Masham’s successors

REBUILDING LIVES FESTIVAL

More than 200 people joined us for our second Rebuilding Lives Festival at The Library of Birmingham back in June. Comprising an afternoon of educational seminars and an evening reception in the library’s beautiful book rotunda, there were 10 exhibitors and a roster of fantastic speakers including SIA members Jerry Ward and Suzanne MacLeod, and a keynote speech from Jonathan Goodwin. The event was kindly sponsored by Stewarts Law and Libertatem Healthcare, who helped ensure we raised a fantastic £58,000. During the event, we launched our seven-year organisational strategy. The event allows us to raise key funds for SIA while also providing an opportunity for networking and building knowledge about SIA and spinal cord injury.

following in her footsteps and using their experience to make it a more positive one for the next person who experiences spinal cord injury.

SIA member Tina Lancaster spoke eloquently about her late father David and how SIA were pivotal in helping support him and the rest of the family. On the day, guests bid on some great auction prizes including a custom piece of artwork by artist and SIA member Dustine West and a private tour of Williams Racing. Hello! magazine also covered the event for their readers.

Royal Patron HRH The Princess Royal, with SIA chief executive, Nik Hartley

VINE AND RHINE

On Thursday, 18 May, 40 intrepid cyclists began travelling 180 miles over three days across France, through Germany and eventually finishing in Schaffhausen in Switzerland as part of the 2023 SIA Overseas Bike Ride.

This year titled the Vine and Rhine, joining our team were representatives from several of our partners and business members including Lime Solicitors, JMW Solicitors, CFG Law, HCC, Stewarts Law, No5 Chambers, Higgs, Levenes, Leigh Day, and Fletchers Solicitors. Accompanying them were many other fantastic SIA supporters who were taking on the challenge to raise vital funds for people with spinal cord injury.

Our team of cyclists enjoyed spectacular views, amazing meals and great company over the duration of the trip. A massive thank you to our sponsors for this year’s ride; JMW Solicitors, Fletchers Solicitors, CFG Law, Lime Solicitors and ISF Coatings.

To register your interest for next year’s ride, visit: spinal.co.uk/get-involved/events/siaoverseas-cycle-ride-2024/ or scan the QR code. Or contact Ollie Buncombe at o.buncombe@spinal.co.uk for more information.

BUSINESS MEMBERSHIP: WELCOME TO OUR NEWEST SUPPORTERS

We’re thrilled to announce details of the organisations which have pledged their support to people living with spinal cord injuries (SCI) by joining the SIA Business Membership Scheme this August.

Most recently we were joined by Wellspect, Corporé, and Boyes Turner. These companies bring with them a wealth of knowledge, experience and expertise, and share SIA’s vision of a fulfilled life for everyone affected by spinal cord injury.

SIA is the expert guiding voice for life after spinal cord injury, and we carefully choose our business members to help ensure that every firm signing up is committed to our charitable aims of helping all people living with SCI access the services and support they need.

As well as their financial contribution to our work, our business members are keenly engaged in our activities, whether that’s taking on a marathon or shark dive, hosting a table at a black-tie dinner or introducing us to their clients and wider networks.

From everyone at SIA, we’d like to say a big thank you to the fantastic firms that make up our Business Membership Scheme!

FIND OUT MORE

For a full list of our business members or for more information on joining our scheme, visit spinal.co.uk/businessmembership/

EQUALITY AND HUMAN RIGHTS IN SOCIAL CARE

Nine principles identified to guide social care decision-making and reform

The EHRC nine principles are:

Equality and human rights should be built into social care and guide decisionmaking and reform in the sector, according to the Equality and Human Rights Commission (EHRC).

As the public body responsible for promoting and enforcing equality and non-discrimination laws, the EHRC has detailed nine principles they’d like to see embedded in social care planning, policy and practice.

11

Available: everyone with social care needs can get the support they need to live a dignified life, with a system that is sufficiently and sustainably funded to achieve that.

22

Accessible: social care services should be easy to navigate and help people to make informed choices. Services must anticipate the needs of disabled people and any adjustments required, including independent advocacy.

33

Person-centred: care should be personalised and tailored to individuals’ needs, including needs related to their protected characteristics. Health, care and wider community services should be coordinated around the individual.

44

Choice and control: individuals should have maximum choice and control over what social care they get and how it’s provided. The voices of those with care needs should be at the centre of decisions that affect them, in line with the principles of participation and co-production.

55

Community and connection: people should be supported to live in their own homes and access social care services close to home, communities and support networks.

66

Effective redress: routes to challenge decisions and raise complaints should be effective and accessible.

DAVE BRACHER Campaigns manager d.bracher@spinal.co.uk

77

Robust regulation: regulators should work to promote equality and human rights and ensure accountability and continuous improvement in social care services.

88

Support for unpaid carers: services should recognise the vital role of unpaid carers and work in partnership with them. Carers should be able to access the support they need, including financial help.

A valued workforce: caring should be a valued profession with fair recruitment, pay and treatment, and opportunities for training, development and progression. This should be recognised as important for improving standards of care and upholding people’s rights.

99

The EHRC hope the principles will be used by:

• Governments and parliamentarians: when making decisions about social care frameworks, funding and reform

• Social care commissioners, providers, and social workers: to help embed equality and human rights into policy and practice

• Regulators: to help guide their important work to improve standards in the social care sector

• Those with care needs and carers (and those who advise and support them): as a resource to help them understand and realise their rights

While we welcome the significant contribution from the EHRC about what adult social care needs to look like in the future, we must remember that the desperately needed reform of social care has been promised repeatedly by successive governments for many years. Despite the cross-party acknowledgement that a solution must be found, they have then all failed to deliver on their pledges. Social care also needs significant investment; it’s been estimated by the Health and Social Care Select Committee that a minimum of £7bn a year extra by the end of this Parliament is needed just to maintain current standards of care.

The social movement Social Care Future describes their vision for social care like this: “We all want to live in the place we call home, with the people and things we love, in communities where we look out for one another, doing what matters to us.”

SIA wholeheartedly endorses this definition and believes this vision, alongside the nine principles from the EHRC, should form the basis of the long-overdue reforms to the social care system.

SIA MERSEYSIDE

Supporting SCI patients and their families for over 25 years

Additionally, we:

• Have regular product demonstrations and talks about benefits and legal issues

• Nurture close ties to local universities and enjoy visits from students and lecturers. Importantly, this helps us spread the word of SCI to the next generation of healthcare professionals

As a support network group, we at the SIA Merseyside & NW branch aim to help our members lead better and more fulfilling lives after a spinal cord injury.

Over the years we’ve become aware of just how many people get left out of the loop and struggle post-injury. We’ve been helping patients and their families for over 25 years. Once part of a broader support network, for around 15 years, we have been the only affiliated group in the country.

Now back to in-person meetings again following our virtual sessions during the Covid-19 pandemic, one of our members, Jo Grover, who is injured at C3/C5 following a spinal stroke/bleed in 2014, said SIA Merseyside had been invaluable in helping her achieve goals of independent living and getting back to work.

She added: “There’s a lot of help available online but I wanted to meet face to face and build relationships with people who might visit the same places as me or eat in restaurants I go to. I hoped they could offer me practical advice about living independently. I was also interested in volunteering and getting back to work.”

So, what is it that we do? Thanks to the outstanding commitment of our group’s officers and members, we have access to a broad range of seminars and other interesting projects that we encourage our members to get involved in.

• Help members into volunteering and employment

• Socialise together and organise our own fundraising events to ensure self-sufficiency

• Raise awareness of SIA through running a marquee at the Warrington Disability Awareness Day

It’s hard work keeping a group like ours running and harder for new groups to start. That’s why it’s great to see SIA’s Gary Dawson and David Eastham helping new groups to start up as part of the SIA support network across our region, which we are proud to be a part of, and a role model for. Recruiting and maintaining new members is crucial for survival, and having continuity helps ensure knowledge is passed on to new members and officers. I was grateful to receive excellent advice from Peter Adams when I took over as chair of our group. Peter had the role for several years, and I was saddened to hear he had passed away in April. He was well known and respected in spinal circles and will be sadly missed.

If you are interested in joining our group, we meet on the first Wednesday of each month at the Brain Charity, Liverpool L3 8LR. Meetings start at 2pm, with a free lunch available from 1pm. To join online, contact siamerseyside@hotmail.com for a link.

STEPHEN CRONIN Chair, SIA Merseyside & NW

SIA Merseyside have been invaluable in helping Jo Grover achieve independent living goals

£300,000

AWARDED TO RESEARCH UTI PREVENTION

Patients with spinal cord injury at heart of major new studies

Two new research projects will investigate how to prevent urinary tract infections (UTIs) in patients with spinal cord injury thanks to Stoke Mandeville Spinal Research (SMSR).

As part of its 10th anniversary year, SMSR will be funding over £300,000 towards the new research, including a project which uses a vaccine never used before in patients living with spinal cord injury (SCI).

“People with SCI suffer with more urinary tract infections than average”, explained SMSR research manager, Derek Cutler. He added:

“Unfortunately, even with the best treatment, severe infection can happen which in some cases may even lead to death. To stop infections happening so frequently, patients may take a daily low dose antibiotic. However, bacteria are becoming resistant to antibiotics, and the more antibiotics used, the worse this problem becomes.”

Involving patients with SCI at the Duke of Cornwall spinal treatment centre, Salisbury, the first study will see researchers from the Royal Berkshire Hospital undertake

a three-year investigation using new vaccine Uromone as an immune-stimulating UTI prophylaxis. Developed to stop bladder infections from happening, Uromone is a spray used under the tongue every day for three months.

Scientific trials from around the world have shown it to have a 90% success rate in preventing water infections in people prone to frequent infections despite using other treatments.

This treatment could be life changing, yet it has never been used in SCI patients. Researchers hope to change

this by comparing how effective Uromune is at preventing bladder infections against a fake Uromune by using the most scientifically accurate type of research study.

The second project is a two-year international study which will be conducted at the University Hospital Basel, Switzerland, examining whether re-use or single use of catheters in SCI patients is the safest and best option in the prevention of UTIs.

FURTHER INFORMATION

To find out more, visit lifeafterparalysis.com

This treatment could be life changing, yet it has never been used in SCI patients

CHRISTMAS CARDS 2023

NEW FOR 2023

Festive Woodland Wreath, designed by Alice Perrin

Size: 126 x 172mm

Greeting inside: Season’s Greetings £5.95

Robin, designed by Alice Perrin

Size:126 x 172mm

Greeting inside: Season’s Greetings £5.95

Polar Bears, designed by Alice Perrin

Size: 140x 140mm

Greeting inside: Season’s Greetings £5.95

“These cards are dedicated to my wonderful friend Samantha Maund Morris, and her love of animals. Before my career in tattooing, I was a carer. This is how I met my now very dear friend Sam, whom I still treasure 10 years later, who sustained a spinal cord injury when she was a young girl. Thank you for our beautiful friendship.”

EXCLUSIVELY DESIGNED FOR SIA BY SCI ARTISTS

Size: 140 x 140mm

Greeting inside: Season’s Greetings £5.95

Size: 126 x 172mm

Greeting inside: Season’s Greetings £5.95

Christmas Wreath, drawn by Dustine West

Size: 150 x 150 mm

Greeting inside: Season’s Greetings £5.95

All Christmas cards are supplied in packs of 10 with envelopes

Go green this Christmas! You can order electronic versions of your favourite card to send, helping reduce paper and printing use. Visit www.charitycardshop.com/SIA to send yours today!

Size: 150 x 150 mm

Greeting inside: Season’s Greetings

£4.95

Size: 150 x 150 mm

Greeting inside: Season’s Greetings £4.95

Please complete the order form overleaf

NEW for 2023 - send large volumes of e-cards at discounted prices! Whether for a company or for friends, this is a simple way to send e-cards in bulk!

Dachshund through the snow

Corgis in Hats

Specially designed by Alice Perrin from TV’s Tattoo fixers

Alice Perrin

Three Wise Men, painted by Clive Hills

Angel Gabriel, painted by Clive Hills

CHRISTMAS CARDS ORDER FORM 2023

Buy your Christmas cards today!

Orders will be accepted up until 15th December 2023, please allow up to 14 days for delivery. Return this completed form with a cheque made payable to Spinal Injuries Association to the address opposite.

Alternatively, please fill in your card details on this form, call us on 01227 811 641 or visit: www.charitycardshop.com/SIA

Our phone lines are open Monday to Thursday 8.30am - 5pm and until 4pm on Fridays.

Please return this form to: Spinal Injuries Association

Christmas Cards

Appledown House

Barton Business Park

New Dover Road

Canterbury

Kent CT1 3TE

1 Festive Woodland Wreath, designed by Alice Perrin

2 Robin, designed by Alice Perrin

3 Polar Bears, designed by Alice Perrin

4 Three Wise Men, painted by Clive Hills

5 Angel Gabriel, painted by Clive Hills

6 Christmas Wreath, drawn by Dustine West

7 Dachshund through the snow

8 Corgis in Hats

Please add your postage & packing within UK*

*Please note that you will be responsible for postage & packaging costs if you return part or all of your order unless faulty.

Orders up to £10 - £3.75 Between £10.01 to £50 - £4.75 Orders over £50 - £6.75

I am a UK taxpayer, and if I pay less income tax and/or capital gains tax in the current tax year than the amount of Gift Aid claimed on all my charitable donations, it is my responsibility to pay any difference.

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Address:

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I am paying by: Cheque made payable to Spinal Injuries Association

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We will only use your cards details to process your order, after which they will be shredded. You can find out more about how SIA uses your data and protects your privacy at spinal.co.uk/privacy-policy

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Please complete all fields otherwise we’ll be unable to process your order.

You are receiving this because you have previously supported SIA. If you would like to change your contact preferences, please email supportercare@spinal.co.uk or call

OUR SUPPORT NETWORK IS GROWING!

We’re delighted to introduce two new support coordinators –Gaynor Thompson and Richard Devine – to our incredible team

Gaynor, 31, lives in South Wales with husband Dale and six-year-old son Joey.

“I hurt my back and was struggling with pain in my lower back and legs. I was diagnosed with sciatica over the phone in December 2020. Four weeks later, I attended A&E as I was struggling to walk or stand up straight. I was diagnosed with the rare condition cauda equina syndrome (CES) and needed emergency surgery. In February 2023 I had revision

surgery. Unfortunately, this didn’t help my condition and I’m awaiting my third procedure.

“I have L4,5 and S1 damage. I can walk and use a walking stick, depending on the pain and my day-to-day life. It is a hidden disability which is quite hard to live with as people assume you are ‘normal’. I suffer with bladder and bowel issues and loss of sensation. Also, with nerve damage affecting both of my legs but mostly my right side, I struggle to stand or sit for long periods of time. This also affects my mental health and my sleeping ability.

“I want to help others suffering with CES and support them as I was unable to find much help and guidance on this condition. As I struggled to find mental and physical help after my emergency operation, I cannot wait to help

and support others going through such a traumatic and life changing event.

“I think newly injured people, their friends and families benefit from connecting with support coordinators because of our personal experiences. We have knowledge and can offer advice and support, and people can relate to us through the traumatic experiences they’ve had.” Gaynor’s role covers South Wales and the West of England.

Richard is 35 and lives in Durham with his family.

“I competed for Great Britain in martial arts and a few of my teammates had gone into stunt work. I decided it was a good opportunity for me. In 2012 I was working as a stuntman abroad when I had a trampolining accident during training and sustained a C6 spinal cord injury.

“Becoming completely independent again after my injury is still personally one of my greatest achievements. Although the spinal units are amazing, I don’t think you always get all the support and information you need while you’re there, which can hold you back emotionally and physically. I think getting the lived experience from support coordinators, either to a newly injured person or their family is invaluable.

“I don’t think there’s anything quite as rewarding as helping someone who’s newly injured and really seeing them benefit from it. I’ve often been invited back to spinal units to show new patients how to do things and I’m over the moon to be now doing that as a job.” Richard’s support role covers all of the northeast and Carlisle.

GAYNOR THOMPSON Support coordinator g.thompson@spinal.co.uk

RICHARD DEVINE Support coordinator r.devine@spinal.co.uk

CLASSIFIEDS

PROPERTY FOR SALE

LARGE VICTORIAN FAMILY HOME FOR SALE

Lived in by a T7 complete paraplegic for the past 20 years. This home has a through-floor lift, wheelchair-accessible shower room, and large ramps, making this 4/5 bedroom house a perfect family or multigenerational home. Comprising of 3 reception rooms on the ground floor, 1 with a log burner and 1 with an open fireplace, a large study/5th bedroom with its own external access, a generous open hallway with original Minton tile floor, kitchen, utility room and shower room. The first floor boasts 4 bedrooms, a large family bathroom, and 2 of the rooms are linked by a jack-and-jill wheelchairaccessible shower room. The property

ITEMS FOR SALE

EASYSTAND GLIDER 6000 - LARGE £2,500.00

Buyer to collect from N. Devon Enquiries to: ray48uk@gmail.com

ROMA MEDICAL TWIN WHEEL WHEELCHAIR PACK FOR SALE. Purchased in January 2023 for £655 and used less than 10 times. Fits all wheelchairs. Selling due to change in circumstances. Very good product, great condition with no issues. Looking for £375 Ono. Please call 07786 515965

HOLIDAY TRANSPORT

VEHICLE HIRE, NEW ZEALAND

We have the largest mobility rental fleet in NZ, and 24/7 nationwide roadside assistance. Our personalised service means you get the perfect vehicle for your needs, and we can also offer advice on accessible accommodation and activities. We’ll get you on the road for the trip of a lifetime. Visit www.freedommobility.co.nz

PROPERTY FOR RENT (UK)

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 wet room. 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

TREWORGANS FARM HOLIDAYS

MID CORNWALL

Specially converted detached cottages (sleep 4 & 6) that are fully wheelchair accessible. Mobility aids include 4-section electric profiling beds, air mattresses, ceiling and portable hoists, shower chairs and rise/recline chairs as well as many other items. All bedrooms have en-suite facilities and each accessible bedroom has a level access wet room. Adapted kitchens. Accessible decked patio areas. 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. For a video tour visit www.treworgans.co.uk.

ENDEAVOUR DORSET

LET

Hill Lodge Dorset

SCOTLAND

CLOBER FARM, MILNGAVIE, GLASGOW

Fully accessible self-catering apartment & landscaped garden. Clober Farm is situated 45 mins from Loch Lomond & the Trossachs National Park and only 7 miles from Glasgow. Master bedroom with Liko 200 ceiling tracking hoist, height adjustable profiling bed and Invacare pressure relief mattress. Ensuite wet room. 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

WALES

GLAN Y GORS COTTAGE, SNOWDONIA

Fully accessible, self-catering cottage in beautiful rural location, with open views of Snowdon and surrounding mountains. 4 bedrooms, 3 bathrooms, large kitchen/diner, lounge with log fire. Ground floor bedroom and shower room. Hospital bed and mobile hoist available. Sleeps 10 (12 with sofa bed), reduced rates for smaller groups. See website for details: www.wilsons-holidays.co.uk, info@wilsons-holidays.co.uk, 01286 870 261.

PROPERTY FOR RENT EU

FRANCE

COLLIOURE, SOUTH OF FRANCE

Ground-floor, two-bedroom apartment, sleeps four/six. Level access throughout. Designed specifically for people with a spinal cord injury. Ensuite bathrooms, pressure mattresses, AC, full heating. Quiet but central location. Garden, off-street parking. Within 400m easy push of a lovely town, market, shops and beach. Separate upstairs apartment available for family or friends. www.origincare.com/lorigin-home/ or call Francois on – 0033 607 51 59 12.

LANGUEDOC, SOUTH OF FRANCE

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 495 435 or 07785 338 497.Email: frenchlibertyuk@gmail.com

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

ALMANCIL, ALGARVE

Outstanding, fully-accessible, luxury, private villa set in beautiful countryside. Three bedrooms, all ensuite with wheel-in showers. Private pool with hoist. Comfortable lounge/ dining rooms and well-equipped kitchen. All you could wish for in a holiday home and so much more! To contact us call 01530 833 690 or www.villas-algarve.co.uk

SPAIN

COSTA BLANCA, TORREVIEJA

Established, detached family villa with lovely gardens in sunny Torrevieja on the Spanish Costa Blanca. Huge wheelin swimming pool. Custom built for C5 owner. Close to beach and all amenities. Airport 20-mins. Converted vehicle also available to hire. For details 01262 676 015 www.disabledvilla.com

SUPPORT SERVICES

SIA MERSEYSIDE & NORTHWEST REGION

The popular Merseyside SIA support group meets on the first Wednesday of each month from 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. We have regular guest speakers and social events etc. A free lunch is available from 1pm. Our main meeting is now broadcast simultaneously online, together with an online only catch-up meeting on the third Wednesday of each month. Come and join us for some friendly chat and get involved with some of our numerous ongoing and interesting projects and events. For more details visit www.siamerseyside.org or call Stephen Cronin on 07712 538 197.

AGEING WITH CONFIDENCE

Are you feeling overwhelmed with dayto-day challenges of living with a spinal cord injury as you age? I am an ageingwell consultant who provides advice and tailored plans to prepare for and manage ageing with a disability or long term condition. For a free 15-minute consultation, visit www.age-confident.com or call Joy Sinclair on 07786 615 078.

JO-ANNE’S PERSONAL ASSISTANCE SERVICE – COVID-19 EMERGENCY COVER AVAILABLE

Taking bookings through to winter 2023. If you require a personal assistant at this time, please call JPAS on 07500 703 004. Email: jojpas@gmail.com I am happy to travel to any location within the UK.

ADVERTISING RATES

Member rates

50p per word, minimum charge of £20 for any one advert.

Non-members

80p per word, minimum charge of £25 for any one advert. VAT will be added to the cost.

Email your advertisement to siaforward@media-shed.co.uk

The closing date for contributions to the Winter issue is 19 Oct ‘23.

of making a booking/agreeing to a purchase. SIA cannot take responsibility for any inaccuracies or omissions and purchases/bookings made are entirely at your own risk. If you have any comments, please email sia@spinal.co.uk

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

Urology products that make a difference

Short and strong.

• Available in 9 sizes, from 18mm-35mm (Ø)

• Shorter length – 75mm

• Stronger adhesive

• Buffer/comfort zone to prevent backflow and sheaths blowing off

• Latex-FREE

9 sizes

No more embarrassing leaks?

• Available in 11 sizes, from 18mm-40mm (Ø)

• Longer length – 130mm

• Large buffer/comfort zone to prevent backflow and sheaths blowing off

• Latex-FREE

• Customise/remove excess length (scissors provided)

• Perfect fit/size for all

11 sizes

Bendi Bags

• Specifically designed for wheelchair users

• 700ml and 1300ml sizes

• Shaped to the contours of the bended knee

Comfort Bags

• Traditionally shaped leg bag

• 600ml and 1000ml sizes

• 7cm shorter in length than many 750ml bags – no unsightly taps dangling

Bags

• Ideal for sun, sports, and even some short clothing

• 500ml capacity

• Dress as YOU want, not to cover the leg bag