BACK ONE
History of SAUK 1981-2002
By Stephanie Clark
Scoliosis and Chronic Pain
By Eloise Maxwell
National Trials & Bespoke Brace Treatment For Young People with Scoliosis
By Rav Jayasuriya
Katie Braybrook
By Lisa Graham-Wisener
Georgia Glover
THE HISTORY OF SAUK 1981-2002
One day in 1980 Ailie Harrison told me that one of Dr Phillip Zorab’s patients, had said to her “you know, what we need is a self-help group for people with scoliosis”. That sowed a seed that grew into what SAUK/SSR is today. Ailie asked me to join her and we approached Phillip Zorab for help. He wrote to 500 of his patients and about 200 replied and formed the first members of what was then known as the Scoliosis Self-Help Group (SSHG).
Ailie and I, together with Stuart Spencer, a previous SAUK Trustee, all worked with Phillip Zorab at the Cardiothoracic Institute, Brompton Hospital, in London – hence our interest in scoliosis. I started my time there, in 1967, working with Dr Yves Cotrel at L’Institut Calot in Berck Plage, France, and Ailie in London. There were about 400 children with scoliosis receiving treatment at that institution and they had a hard regimen to follow of months of intensive physiotherapy and treatment with plaster casts or traction. Once they were fairly straight they would have spinal fusion with Harrington rods.
The results were amazing, but the patients were in hospital for at least 10 months and saw their families only at weekends. It was tough for them. In the UK the system was very different. Children were put in a brace, usually the Milwaukee or Boston, stayed at home, and were operated on when they reached skeletal maturity. The preoperation treatment at that time served only to slow progression – children’s curvatures were rarely reduced. Adults were not operated on at all. Phillip Zorab used to check the lung function of patients before they were operated on by Mr Charles Manning, FRCS, at the Royal National Hospital (RNOH) in Stanmore. Many of our older members will recognise these names!
Ailie and I set up the SSHG in 1981, registered it as a charity a few years later, and ran it from her dining room for several years. We were viewed with deep suspicion by the medical profession at first. The fear was that SAUK, by fully informing patients about scoliosis, would make their work more difficult. We should remember that this was in the early 1980s and attitudes have changed considerably since then. However, we had our supporters and with time all came to see that actually SAUK made their job easier and provided much needed support for their patients.
The organisation grew quickly and before we knew it we had about 800 members after 5 years, and
nearly 3000 by 1996, from all over the UK and Eire. In 1985 we moved to an office in the Disabled Living Foundation (DLF), London. Pauline Grey and Brenda Sullivan joined us part time to help as the organisation got very busy, and it was a great little team.
Our aims were much the same as they are today: to support people with scoliosis and their families; to provide information about scoliosis; to educate the public and physicians about scoliosis; and to raise awareness of the condition. We decided the charity needed more gravitas to reflect its growing membership and expansion of our remit and activities, so in 1986 we changed its name to Scoliosis Association (UK). At that time scoliosis clinics were few and did not offer the kind of support we were able to give.
Our early Trustees were Ailie, myself, Isobel Gray, Andrew Minns, Woodthorpe Harrison, Ailie’s husband, and Miss Min Mehta, FRCS, who used to treat babies at RNOH Stanmore. We would have our Trustee meetings in Ailie’s house. We were very honoured that Group Captain Leonard Cheshire VC who had set up charities to help people with disabilities and was a remarkable man became our first Patron, and after his death in 1992 his wife Sue Ryder (Baroness Warsaw), a renowned humanitarian, kindly agreed to take his place.
We began holding meetings that took place in centres of excellence and where our members could hear talks by the local surgeon, physiotherapists, orthotists, and so on. We held two or three a year, the first one of which was at the Brompton Hospital and the second of which was at the Royal National Orthopaedic Hospital in Stanmore. Pauline Grey would organise a raffle and SAUK goods were available to buy, which all helped with fundraising as well as providing patients and their families with an opportunity to meet others in the same boat.
We produced a newsletter four times a year, which was written by hand by Ailie for several years until SAUK was given its first computer in 1986, kindly donated by Janssen Pharmaceuticals Ltd. After we changed the name to Scoliosis Association (UK), it was registered in the same year. We held our first raffle in 1987, with prizes donated mainly by businesses and members. It raised nearly
£4000! It became a major source of income, together with Christmas card sales, every year, thanks to our generous membership.
Quite early on we recruited as volunteer Regional Secretaries members from around the UK who were based in the NHS areas at the time, and by 1996 we had 29. These volunteers provided invaluable support to our members locally. People who wanted to be put in touch with others with similar experiences were referred to their local representative who helped them by matching their needs with those of others. The Regional Secretaries (later known as Regional Representatives) also did a lot of fundraising for us and held meetings for their area. Many areas had more than one representative and we had training days for them every 2 years.
We produced a poster about scoliosis that was displayed in hospitals and GP surgeries, and another poster about early treatment infants. We had leaflets for distribution in scoliosis clinics and publications about pregnancy and scoliosis and scoliosis in infants, written by Trustees with expertise in these subjects, Professor Anita Simonds of Brompton Hospital and Min Mehta FRCS, of RNOH, Stanmore. We also had booklets of individual’s stories about their scoliosis journeys. All these served to inform and raise awareness in the days before the world wide web and computers became part of everyday life. Furthering our aims of raising awareness and providing information, we produced a Handbook of Scoliosis, which covered all aspects of the disorder and also turned out to be a useful source of information for our members.
We moved to Ivebury Court in 1992 having outgrown the small office at the DLF. There Denise Aulsbury joined us as an administrative person with clerical experience. Al Menzies, a Trustee at the time, set up our first website in1994. It was a simple affair compared with what it is now, but we felt it was a great step forward. We were very fortunate to get a grant from Strongbones Chldren’s Charitable Trust for several years, which we used to hold family weekends or days out. A trip to the London Aquarium and a group outing to see The Lion King come to mind. Families absolutely loved these get togethers but sadly they came to an end when funding was no longer available.
After a lot of publicity about scoliosis in the media and calls from desperate people wanting information about scoliosis we decided we should set up a Helpline. This was funded by the Department of Health for some years. It was manned at first during working hours 3 days a week, but eventually 5 days a week. It was much needed and has helped many people over the
years. One thing it also did for SAUK was to make us realise that older people needed our support as much as did families with affected young children.
We continued our campaigns to raise awareness and to that end Carol Richards, another Trustee, designed and built a scoliosis garden which was accepted by Hampton Court Flower Show. Linford Christie, a UK Olympian, opened it and it was just marvellous and attracted a lot of attention and won a Bronze Medal. This and many other projects and activities were funded largely by our members, who were and are absolutely brilliant at raising money to support SAUK.
In 1998 when Ailie was nearing her 80s she retired as chair but continued for some years as a Trustee. I took over the chair and have just retired, also at 80! Ailie continued to be very active, full of ideas as always, and one of them was to prove to be an amazing success. Ailie had applied on behalf of SAUK for a lottery grant, which was successful at the second attempt. This allowed us to employ a fulltime person in the office , Lesley Anne O'Shea, to organise and run the project, although Ailie continued to spend a day a week at SAUK. The project was to have three parts.
The first was a schools teaching pack, which was part of the biology syllabus and taught pupils about scoliosis. It was so successful that many schools asked for further packs the following year. The second part was a wonderful exhibition of photographs taken by Patrick Lichfield, a Patron of SAUK at the time, of people with scoliosis, celebrities, and a scoliosis surgeon. The exhibition had a marvellous launch in London, which was attended by Lord Lichfield and many of the celebrities who had been photographed. It then travelled to Salford, Edinburgh, Belfast, and Cardiff. The third part was a letter to over 30 000 GPs telling them about SAUK’s work and urging them to refer patients to scoliosis centres for assessment and treatment. This all took place in 2001-02. Lord Lichfield had his studios near SAUK’s office and Ailie had walked in one day and asked him to be a Patron. His reply was “what would I have to do?”, implying he was very busy, to which Ailie replied “nothing at all”! However, he did come up trumps for us in our awareness campaign. Patrick, Earl of Lichfield, was still a Patron of SAUK when he died in 2006.
To be continued in a future edition of Backbone.
ByStephanieClark,PhD Co-founder Retired Chair of the Trustees
Patrons
Group Captain Leonard Cheshire VC OM (1982-1992)
Sue Ryder, Baroness Warsaw (1992-1996)
Dame Jennifer Jenkins (1993 - 1998)
David Rintoul (1994-present)
Lord Patrick Lichfield (1996-2005)
Jane Asher (2005 - 2009)
Pippa Britton (2017-present)
HRH Princess Eugenie (2020-present)
Trustees over the years
EarlyMajorDonors
Sir Halley Stewart Trust
Sir Michael Sobell
Janssen Pharmaceuticals
Marks and Spencer, Children in Need
British Telecom
Strongbones Children’s Charitable Trust Department of Health
British Scoliosis Society + BSRF
Pierre Bernard, Anne Child FRCP, Leia Clancy, Stephanie Clark PhD, Mike Edgar FRCS, Alan Gardner FRCS, Isobel Gray, Ailie Harrison, David Harrison FRCS, Ian Harrison, Woodthorpe Harrison, Nick Jones MD, Susannah Kraft, Rachel Levene MD, Brenda Luxton-Pearce, Min Mehta FRCS, Al Menzies, Andrew Minns, Colin Nnadi FRCS, Carol Richards, Anita Simonds FRCP, Stuart Spencer PhD, Thanos Tsirikis FRCS.
TheLichfieldTeam: Lord Lichfield is in the middle, Stephanie Clark (Founder and Chair) is on his left, Lesley Anne O'Shea (SAUK Project Manager) is on his right and Ailie Harrison (Founder and Trustee) is seated. Taken at Lichfield Studios in 2002.
SCOLIOSIS AND CHRONIC PAIN: Discovering my low pain recipe
If you’re reading this article, you are most likely a person who has scoliosis, or perhaps you know and love someone who has it. My hope is that what I have to share will be helpful for all those navigating the impact of scoliosis - which includes the carers, partners, parents, and friends of those with the condition.
I was diagnosed with scoliosis when I was 14, back in 2002, and by the time I had corrective surgery in 2004, the Cobb angle of my S-shaped spine was 55 degrees. Surgery reduced this to 26 degrees, and it has remained at this angle for the succeeding two decades. While my spine remained stable, I wasn’t without pain - back pain has been a part of my life for as long as I can remember - but it was a level that I could tolerate, a rumbling in the background of my life, that didn’t prevent me from doing any of the physical activities I loved; running half marathons, Pilates, yoga, cycling, rock climbing - I did it all, and though I would sometimes have to pull back, and ease off for a while to give my body a chance to recover, I mainly accepted that this was just a normal part of being a physically active human.
For most of the past 20 years, I have described myself as someone who had scoliosis, not as someone who has scoliosis. It wasn’t that I was pretending I didn’t have any issues with my spine, but I genuinely believed that any physical issues with my body were to do with something else - that the surgery had cured me of any spine-related ailments. And so, when my pain levels began to increase around the time of the first lockdown during the pandemic in the spring of 2020, to the point that I could no longer ignore the possibility that something might be going on with my spine, I set about investigating the cause of the pain.
Seeing an X-ray for the first time in over a decade was a real shock - there it was, my curvy spine in all its glory, so much more curved than I had remembered, but no signs of increased curvature, or anything to be concerned about. After having an MRI scan, it turned out I did have some funky things going on with a couple of my discs - signs of degradation and a couple of herniated discs (not, I stress, slipped disc! This is a term that needs to be banned from use. I’ll save that rant for another time, but long story short - your discs cannot “slip” out of place).
And yet, where I was experiencing pain did not match up with the location of the herniated discs. So - what was causing my pain? I was told to give up running and climbing, given what was going on with my discs there was a concern that these high-impact activities might be making things worse, and to focus on things like Pilates. I did what I was told, with a heavy heart, but when it became obvious that this increased level of pain seemed to be here to stay, and after a major pain flare-up in the summer of 2022, I began a deep dive into better understanding pain and pain management. It’s a wild world, where nothing is exactly as it seems, and assumptions are tested at every turnso buckle up!
Whatispain?
While we might think that a life with absolutely no pain would be ideal, pain is actually essential for our survival. I find this fact comforting, given that I live with daily pain. So, why do we experience pain? Put simply, pain is the body’s warning system, built to protect us from potential danger to our well-being - it tells us to stop and rest if we injure ourselves running, or to remove our hand from a hot surface. Pain keeps us safe.1
The International Association for the Study of Pain defines pain as “an unpleasant sensory and emotional experience”. This means that pain is both physical and emotional; how you think and feel affect your experience of pain. This was the biggest “ah-ha” moment for me and I am so grateful to my brother Ted, for alerting me to an interview with Ezra Klein and Rachel Zoffness2 , which is how I discovered the three-pronged approach to pain that acknowledges that it is a biopsychosocial phenomenon.
There is a tendency, in Western medicine, to focus mainly on biological issues when treating painwe can end up relying on medication or surgical
1.I should say that I’m massively oversimplifying an incredibly complex subject here, and I encourage you to go away and do your own digging into the topic - I’ve listed a few resources at the end of the article which offer a good starting point. 2.Rachel Zoffness is a pain psychologist and medical consultant, and she has produced a book The Pain Management Workbook, which I also highly recommend for anyone interested in exploring a practical approach to finding relief from chronic pain. You can listen to her interview with Ezra Klein here: https://open.spotify.com/episode/78ydscTn41JfUVYTLLFPGX?si=a6a0ca504e464b89
procedures in the hope that this will ease the pain. This is exactly where I was back in 2020 - thinking that my surgeon would have the answer to why I was in so much pain. But simply focusing on what’s happening on a physiological level doesn’t address the complex nature of pain, which as I’ve said above, though it bears repeating, is both physical and emotional. What the biopsychosocial model of pain suggests is that when thinking about reducing pain, we need to pay attention to these three areas:
1. Biological: genetics, tissue damage, inflammation, hormones, diet
2. Psychological: thoughts, beliefs, emotions, coping behaviours
3. Sociological: relationships, support networks, socioeconomic factors, environmental context.
I should stress that I am talking about chronic pain here, not acute pain. Acute pain is usually the result of tissue damage or an injury, such as a broken bone, and it can last up to 3 months. Chronic pain is the kind of pain that lasts for longer than 3 months - it can be linked to a condition such as scoliosis and sometimes there may be no known cause. I want to emphasise that if you feel pain, it’s real, no matter whether medical professionals can give you a reason for the pain or not.
Livingwithchronicpain
With chronic pain, things start to get a little more complicated, as the pain we are feeling is not because of an injury - there is no “danger” we need to be aware of, so to speak. So, what is actually happening? When we’ve been experiencing pain for a while, it’s as if your brain has been “practising” pain - the way we might practise learning an instrument. Your nervous system becomes sensitised to pain, which means that the triggers for pain can come from seemingly inconsequential things. Warning messages are interpreted as signs of danger, even though you are actually safe, and thus we can experience pain from minor activities such as bending down to pick something off the floor, or going for a short walk.
Over time, the effect of this sensitised nervous system can be incredibly damaging; I myself have experienced this feeling of my life becoming incredibly small, as I stopped running and climbing, cancelled plans with friends and family, and shut myself off from the world, in the hope that bed rest would help me recover. But instead of recovering, the pain lingered and I felt incredibly scared and isolated. I should say that sometimes, rest is
absolutely the right thing to do when we’re in pain, but chronic pain is a tricksy beast, and though it very often feels like we just need to lie down, to be horizontal, to do nothing, the opposite is actually what’s needed a lot of the time.
Over the past few years I’ve experienced periods of deep depression, and in my most despairing moments I convinced myself that there was nothing to be done, and rather than burdening my loved ones, I’d actually be better off alone. It can become a serious downward spiral in these situations - the pain means you remove yourself from the world, and in removing yourself from the world you feel miserable, and that misery and isolation means you stay focused on the pain, which then increases the pain, and on it goes.
The key is figuring out what helps you to break that cycle. Just as the body can become sensitised to pain triggers, it can also become desensitised. When I am stressed or anxious, and having a hard time at work, or in my relationship - I can be pretty certain that I’ll also experience increased pain levels. If, in those moments, I end up focusing on the pain, and do the usual thing of cancelling plans, and staying indoors more, I can also be sure that the pain will increase, or at least remain at quite a constant level. If, instead, I acknowledge that the pain is there, but continue my regular activities, maybe dialling things back ever so slightly (doing 2 or 3 exercise classes in a week, rather than 4 or 5), and I ensure that I’m moving every day - even if that’s just a short walk around the block - the pain will usually lessen within a day or so.
You have the power!
I figured out a year or so ago that being super sedentary, and doing a desk-based job was not going to work for me anymore - I needed a change. I’ve recently qualified as a Pilates instructor, and I’m already seeing the benefits of having more movement in my life. I’m lucky to have the support of my husband and family to be able to do this, and I absolutely recognise that privilege. This may not be feasible for all people, but we do all have the ability to make small changes that can drastically improve our experience of chronic pain.
There are a whole host of amazing cognitive behavioural therapy (CBT) type approaches that can help shift your relationship to pain.3 One simple exercise you can do is to rethink the language you use around your pain; if you often describe your pain as a stabbing or burning sensation, that will
3.There are a number of these in Zoffness’s Pain Management Workbook. The Curable app is another tool designed to help people with chronic pain, that also has lots of helpful CBT exercises
SCOLIOSIS AND CHRONIC PAIN:
conjure up images of those things in your mind, ultimately increasing feelings of tension (remember -pain is psychological as well as physical!). If you can reframe the experience to focus on how you’d like to feel - eg. I’d love my body to feel lighter, and softer - this more positive language shifts your attention towards more pleasurable sensations, which in turn should help you reach a calmer state of mind when considering your body’s needs.
I’ll leave you with this question: What is your low pain recipe? For me, it’s a combination of the following things: getting at least 8 hours of sleep a night (sometimes this requires me to sleep in/ cancel early work calls), moving every daywhether that’s just going for a walk, or doing an exercise class, eating a balanced diet, seeing my friends and family, and getting outside as much as possible. Simple, right? Not always! But if I can keep my low pain recipe list in mind, even when the pain is bad, I know that I’m more likely to feel better sooner.
And then there are those moments when you’ve followed the recipe and the pain still shows up. I got married this summer, and I was in a lot of pain on my wedding day - not ideal, to say the least. I had been in pain for a few days before the wedding (partly due to the mounting stress before the big day), so we had come up with a plan ahead of time; I spent a couple of hours during the party lying on a mattress in a quiet room, having friends come and chat to me. I felt a bit like a queen holding court! While this absolutely wasn’t part of what I had in mind when dreaming of my wedding day, taking this time out meant I was able to enjoy the whole day and evening, even if I wasn’t in full party mode the entire time.
I tell this story because I can see that one way of interpreting the approach to pain management I’ve outlined above is that we have to just put on a brave face and push through the pain. And that is absolutely not what I am advocating for. It’s possible to do all the things I’ve suggested and the pain can still show up, as it did for me on my wedding day. The key is finding that balance of knowing when to rest and when to step back into the party - and this takes time to figure out. You’ll make some mistakes for sure, and each time you’ll learn something helpful for the next time.
There is sadly no silver bullet when it comes to chronic pain - no one-size-fits-all solution. I’ve lost track of the number of times I’ve wished for a straight spine, or that some surgeon could figure out a way of magicking the pain away, even with all I know about chronic pain I do still have those days. The days of feeling the injustice of my situation, of feeling so angry at other people in their mid-30s who don’t have to adapt the way they live their life based on how they think their body will respond to what are otherwise really fun experiences; rambling in the countryside for my friend’s birthday, watching my husband’s favourite band perform live, flying to a faraway holiday destination, weeping at the end a sad movie at the cinema, playing chasing games with my nieces and nephews. I feel fear and anxiety when confronted with all these activities AND I still do them, knowing that these are the things that make life worth living, and the pain does not control my life - I do.
By Eloise Maxwell
A wedding day rest.
NATIONAL TRIALS & BESPOKE BRACE TREATMENT FOR YOUNG PEOPLE WITH SCOLIOSIS
It is a very exciting time for research into scoliosis affecting young people in the UK. My research is about improving brace treatment for scoliosis, which if used well can help many young people avoid spinal surgery. However, brace treatment has many challenges, which can be made better with your help! Scan the QR code to take part.
NationalTrials
Across the UK 22 paediatric spinal centres in the UK have come together to deliver the largest trial in this area of research, exploring two types of brace, through the BASIS study.
This study is open to newly diagnosed patients with scoliosis aged between 10 and 18 years. For more information check out: https:// basisstudy.org
It has been a pleasure to help design and deliver this fantastic study which has the potential to elevate the national standard of bracing in the UK and change NHS best practice for bracing in scoliosis.
Whilst large national trials answer research questions in the most scientific way for large groups of scoliosis patients, my personal interest focuses on individualising treatment for young people with scoliosis.
BespokeTreatment
My PhD project aims to understand the challenges young people face when they undergo brace treatment for scoliosis. I want to explore what factors help and hinder them to wear their brace. I want to be able to predict at the start of brace treatment, which young people will need extra
support to help them wear their brace and see if there is a better way we can support them. I want to understand what features of a brace are most important to young people and appreciate how they trade off the pros and cons of wearing a brace.
BraceDCEStudy
The Brace DCE (discrete choice experiment) study is a special type of survey. It helps us understand the best way to treat young people with scoliosis, by understanding their preferences in brace treatment. Young people aged 10-18 years with scoliosis are invited to take part. In the questionnaire participants will choose between two options they would prefer. Each brace option has different features. The questionnaire will look like this:
By Rav Jayasuriya T&O Specialist Registrar Paediatric Spinal Deformity Research Fellow
TAKE PART NOW!
You can help us with this research and make bracing for scoliosis better in the future. If you are aged between 10-18 years with scoliosis, no matter what treatment you have previously had for your scoliosis, whether it was bracing, surgery, or active monitoring, you can help by completing this questionnaire which will take 10-15 minutes.
If you are reading online click here or scan this:
WHATEVER YOU DO, DO IT FOR US!
We’ve had some incredible fundraisers this year and we’re so grateful for the effort, resilience, and commitment our community continues to show year after year. It really does make such a difference.
There are many ways, large and small, that you can help to support our work – from extreme challenges like running a marathon, to running a quiz at your local pub, to having a bake sale at your work or school.
If you’re interested or have any questions, please email fundraising@ssr.org.uk
Maisie Avis - Maisie and her brother organised a sweet sale and raised £200!
Olivia Randles - Olivia challenged herself to a half marathon and managed to raise an incredible £1641!
Libby Cohen - Libby ran the Manchester Half Marathon and raised £1415!
Chris Jones - Chris ran the Bournemouth 10k and raised over £250!
Katie LeggattKatie took part in the Aberdeen Kilt Walk this summer and raised £600!
30 DAY CHALLENGES
This summer we launched our 30-Day Challenges (formerly called Virtual Events).
Our 30-Day Challenges are fun, flexible and really rewarding. It’s a great alternative if running a full marathon or half marathon seems too daunting as you can run a set amount a day and build up to your total. If you reach certain fundraising goals, you will receive an exclusive medal, a gorgeous hoodie and a Rodney bear (dependant on the amount you fundraise).
Please get involved and enjoy this unique opportunity to support us.
Vicki Rawlings
Katie Braybrook
Holly Lievers
Aoibheann Dunleavy
Rebecca Essex
THE BODY ACHIEVES
WHAT THE MIND BELIEVES.
On the 16th of August, I completed a 10K cycle for SSR. This was a major milestone for me, but the journey to get to this point has been far from plain sailing.
Let me rewind back to 2017, when at the age of 14, I underwent major spinal fusion surgery to correct a double curvature in my spine. The recovery was long and gruelling, but I got there. As fellow scoliosis warriors know, having surgery for scoliosis is physically and emotionally challenging.
Unfortunately, my challenges didn’t stop there. I was recently diagnosed with not just one, but two chronic pain conditions (one of which is very rare). I struggled to do simple things without becoming fatigued or causing a flare up of my pain. On top of all of that, since the start of this year, I’ve been battling through multiple foot and ankle injuries.
Understandably, this whole journey has been an emotional roller-coaster for me, filled with frustration, fear, tears, self doubt and a loss in confidence. But it did lead me to discover the power of exercise. Exercise has helped me in more ways than one. Not only have I been able to effectively manage my pain conditions, but it’s boosted my mood too. I never ever thought I’d physically be able to do a 10K. So I feel extremely proud of what I’ve accomplished and it’s helping me to slowly rebuild my confidence back up again.
Of course, I couldn’t go without giving a special thanks to my spinal team at the Evelina London, my foot and ankle consultant at the Fortius Clinic, and a shout-out to my physio and exercise physiology team at Pure Sports Medicine - none of this would’ve been possible without you all. So, thank you.
To anyone considering participating in a virtual event for SSR but not sure if you can do it. Just remember this:
Thebodyachieveswhatthemindbelieves.
ByKatieBraybrook
A BIG THANK YOU FOR FUNDRAISING Our Rewards Scheme
We really do appreciate you fundraising for us. We have so much we want to do to support those with scoliosis and to fund more research into the condition. There are many ways that you can help us by raising whatever you are able to, whether it be from a fun run, a walk, trek or bake sale at work. Here we show you how to go about fundraising using events as your focus and we’ll show you some of the programmes that we offer. We are truly grateful for any support that you can give us and in return we will give you amazing fundraising and training advice - guaranteed. There are also some great rewards!
Fundraising is much easier than you think and we have lots of support both for that and for your training in conjunction with our partner, The Sapphire Running Zone. As a thank you for creating a Just Giving page we will sign you up to one of their NAVY Plans and this gives you access to all of their content that’s normally behind a paywall, including training plans, blogs and much more. In addition we’ll send you one of our quality running vests, or shirts, for training and race day. You’ll also get a code for 20% off a new pair of running shoes from our running retail partner. Keep reading for more on running shoes.
If you raise £200 we will refund your race entry fee (up to £40), if you’ve entered an event, so you get to run it for free, and if you get to £500 you’ll also get one of our hoodies and our teddy bear mascot, Rodney!
Would you like a brand new pair of running shoes? If you raise £1000 you can have them! That’s right, raise £1000 and we’ll send you a code for a new pair of Saucony, Brooks, Hoka, ON, or New Balance running shoes. You choose and we’ll get them sent directly to your door. That’s how much we appreciate your support (all goodies will be dispatched and the refund made on completion of your event). Thank you so much! Head
SHIFTING THE FOCUS IN SCOLIOSIS TREATMENT:
What really matters to young people?
Adolescent idiopathic scoliosis (AIS) is a condition that affects 1-3% of young people worldwide. Although treatments like bracing and surgery can prevent or correct spinal curvature, there’s a lack of international agreement on which approaches work best. Uncertainties remain around the type of brace to use, and the ideal timing of treatment to avoid the need for surgery. Similarly, there are uncertainties in relation to the best surgical procedure, towards correcting the curve while maintaining spinal flexibility and avoiding complications. Choosing the right treatment isn’t just about straightening the spine—it’s about improving lives. And to figure out which treatment options have the biggest effect; research needs to focus on what truly matters to those living with AIS. This is done by choosing the right outcome domains to evaluate treatment. Essentially, outcome domains are what people hope will change or improve through treatment.
MovingbeyondtheCobbAngle
Here’s where the problem lies: when evaluating if treatment has been successful, most research studies have prioritised a technical measurecalled the Cobb angle- which assesses the degree of spinal curvature seen in X-rays. This measure tells only part of the story when estimating whether treatment has been successful. Experts recommend prioritising Patient Reported Outcome Measures (PROMs), which offer a window into how patients actually feel and function day-to-day. These questionnaires help highlight what’s really important to young people with scoliosis.
Unfortunately, even when PROMs are used in AIS research or as part of data collection for spinal registries, they often focus only on outcome domains such as pain and physical functioning, missing other important things like how someone feels about their body image or their social life. And when research studies do use PROMs, they often measure very different outcome domains. This inconsistency makes it difficult to compare findings from different research studies to see which treatments are effective- it is a little like trying to compare apples and oranges. Ensuring that the most important outcome domains are measured consistently—and defined in a way that is meaningful for young people with AIS and their families—has been identified as a key research priority in the UK.
The challenge isn’t just deciding what to measure but also finding the right ways to measure it. Many of the outcome measures currently used don’t fully reflect what life with AIS is actually like. For example, the SRS-22r questionnaire is commonly used to assess quality of life, but recent studies show it may miss key aspects that are important to young people with AIS and may not track changes in their quality of life effectively over time. This makes it difficult to know, when using this measure, if treatment has improved quality of life in a meaningful way.
Measuringwhatmattersmost
One way to tackle this problem is by creating something called a “Core Outcome Set” (COS). A COS is basically a standard list of outcomes that should be measured in every research study or routine clinical practice when evaluating a treatment for a specific health issue. By sticking to this core list, researchers ensure they focus on what really matters to patients. A COS also makes it easier to compare results from different studies, and in doing so helps to address uncertainties about which treatment is best. While researchers and clinicians can still measure other outcomes, they all agree to consistently measure this small, important set. A COS also encourages the use of specific methods to measure these outcomes, and if the current methods aren’t good enough, it can help inspire the creation of better ones.
There’s already recognition that we need to develop a COS for AIS. In the past, efforts involved spinal surgeons and focused on outcomes that researchers typically measured. However, if a COS relies only on past research, it might miss important outcomes that patients and their families care about. There is now recognition that adolescents and young people can and have a right to be involved in the development of COS, which aims to evaluate their care. To create a COS that genuinely reflects the needs and priorities of young people with AIS, it’s important to hear a variety of voices.
ResearchatQueen’sUniversityBelfast
A research team at Queen’s University Belfast, led by Dr Lisa Graham-Wisener and Dr Paul Toner, is working with Mr. Samuel Sloan from Belfast Health
& Social Care Trust and other experts to develop a minimum set of outcomes to help assess the effectiveness of treatments for young people with AIS. This project, called SPINE-COS-AYA, will identify a minimum set of outcomes to measure when assessing two main AIS treatments- bracing and surgery- in both research and routine clinical practice.
The project follows best scientific practices for developing COS, and started by developing a ground-up understanding of which outcome domains are important and why. This critical first stage in the research was funded by the British ScoliosisResearchFoundation (now part of SSR) and involved in-depth qualitative interviews with 40 young people with AIS, their parents and a range of healthcare professionals. Participants were recruited through Northern Ireland’s Regional Scoliosis Service, encompassing adolescents at various treatment stages, ages, and sex. Data were analysed using qualitative methods, focusing on how participants described the outcome domains they found most meaningful. The researchers grouped these outcome domains into categories based on treatment type. This part of the process created a long list of potential outcome domains, which may form part of an eventual COS.
Young people with AIS were involved in the study as research participants, but also as part of a Young Person Advisory Panel which was formed to help shape the study and ensure their voices were included throughout the COS development.
ResearchFindings
The interviews uncovered a total of 91 outcome domains deemed important by participants. Of these, 53 outcomes were relevant to both bracing and surgery, while 15 were specific to bracing and 23 to surgery. Many of the identified outcomes, such as curve progression and quality of life, highlight agreement among the different participant groups (young people with AIS, parents & healthcare professionals) about what should be measured when evaluating AIS treatment. There were some outcome domains identified by only one participant group, e.g. ability to maintain a safe pregnancy in future identified only by young people with AIS. Notably, healthcare professionals identified the most outcomes (n=68), followed by young people with AIS (n=57) and parents (n=53).
When categorising these outcomes, most (81%) related to ‘life impact,’ which includes aspects like quality of life and daily functioning, while only 19% were classified as physiological or clinical outcomes. This is significant, as we know
that previous research has focused more on measuring physiological or clinical outcomes. Within life impact, participants discussed key issues such as emotional challenges, and the effects of treatment on school attendance and social interactions. There were nine outcome domains relating to emotional wellbeing alone, including the importance of self-esteem and body image, and at a more granular level the young person’s ability and confidence to wear the clothes they wish to;
“If people are very aware of their curve and how it looks in certain clothes or maybe in swimwear or things, that would probably be the next important thing for me” - Young person with AIS.
What was a surprise to the researchers is that there were 39 outcome domains relating to delivery of care, focused more on the process of care. This is where participants emphasised the importance of meeting treatment expectations and satisfaction. This for example included the importance of healthcare provider communication;
“He made me feel really comfortable. He came and spoke with me after and he made it so much better. If I’d had a surgeon who wasn’t as likable and charming as he was, I think I would have found it a lot more scary” - Young person with AIS.
NextSteps
By involving young people with AIS, their parents and a range of healthcare professionals in this research, we have identified a long list of potential outcome domains that reflect what really matters when assessing treatment.
The next stage in the research is to bring this list to a worldwide survey, where we will be asking a much larger group of people (including young people with AIS and their parents) to vote on which outcome domains should be part of the core outcome set for AIS. This will result in a COS which can be used worldwide, and which is focused on patient-centred outcomes. This could help ensure that treatments are developed not only to address the spine’s curvature but the priorities of the person.
By Dr Lisa Graham-Wisener Reader in Health Psychology Queen’s University Belfast
A JOURNEY WITH SCOLIOSIS:
The highs and lows of Spinal Fusion
The night before my operation I was petrified. I struggled to sleep due to the wave of anxiety I was feeling. I was doubting my ability to go in the next day for the operation because of my fear.
The day of the operation was 8th of June 2024. I went in early around 6am. I expected to feel so upset the whole morning and question if I should do it, but it was quite the opposite. Something about being around the doctors and nurses, and being talked through the whole procedure, really calmed me down. I felt safe as soon as I got in there and knew that I had the strength to go through with it.
I wanted to write this article to be a voice for those who also struggle with scoliosis and may be anticipating the surgery, letting you all know that it is normal to be frightened, but it gets better. I also wanted to focus this article on exploring the theme of anxiety, which I believe can be caused and heightened by the experience of having scoliosis.
I was first diagnosed with scoliosis when I was 6 years old. It came about due to two cardiothoracic operations I had to go through when I was a baby and which damaged my rib cage. Dealing with it at such a young age was quite a challenge physically as I had to wear a back brace and began to practice Schroth Therapy every morning and night. Trying to get a 6 year old to do exercises twice a day, that didn’t consist of running around or bouncing on a trampoline, was not easy. However, my Mum and I found that the exercise time was good personal time together as we watched fun TV shows in an attempt to distract me from the physical stress of the exercises. As a young child, I don’t think scoliosis had much of a mental effect on me as I was still so young, but as I grew up and entered my teenage years it definitely became more difficult. Enduring it physically was not as challenging as I just got used to the brace and the exercises and became stronger. I also found that dance, which I have done since I was 2, helped build my strength. However, I began to feel mental side effects from my scoliosis as I got older.
I have always been interested in psychology and I now take it as an A-level. Studying has made me introspective about my own anxiety and possible influences. I personally struggle with mild agoraphobia. This is where you feel especially stressed and anxious in social situations such
as crowds and public spaces. I have always questioned why I feel so nervous in these spaces and if my scoliosis has influenced this in some way.
I think that a consequence of having a medical condition can be that you consider yourself weaker than others. Having over a decade of worrying about my back I continuously doubt my ability to defend myself in moments of danger (that I make up in my head!) Furthermore, I think that the feeling of being constantly looked after by my parents (when doing my Schroth therapy) and doctors (in my check up appointments) has also affected my perceived ability to take care of myself. I became so interested in the topic that I decided to conduct a psychological study about it. I did a correlational study about the connection between length of time with scoliosis and level of anxiety. I found that the connection was not significant and so I did not have enough evidence to support my theory, however, it was such an interesting experience and allowed me to learn more about the topic.
Something that I have never had to struggle with was fitting in. I was always accepted and supported by my friends and never made to feel weird or different. This helped me so much through my journey and is still so uplifting post surgery.
The operation was probably the hardest thing I ever had to prepare for. Finding out I had to have it after enduring 12 years of bracing to try to prevent that very outcome was extremely challenging. Having taken the decision to have surgery, I then waited 6 months for it to take place. During that period, I found that speaking to contacts of family and friends who had had the operation really helped dealing with my anxiety. All of them reassured me about how safe they felt on the day but also how normal it was to feel nervous.
The physiotherapy that followed the operation was stressful, not necessarily because of the pain, but because it is so unsettling feeling you have to learn to walk again. However, I was so surprised that after 2 weeks I was able to comfortably walk up the stairs and getting on and off my bed was not the stressful task it was in those first few days.
Since the operation, I feel like I have changed so much. Firstly, I grew almost 5 centimetres which I was very happy about! I also felt so much more confident once I was more able to move around and I was out of the hospital.
Doing the operation was the scariest but the most rewarding thing I have ever done and I do not regret one bit of it. The journey of getting there was not the easiest but it allowed me to learn so much about myself. The experience has shaped me (physically and figuratively) to be the person I am today. If you are reading this with any experience of scoliosis, I hope you know that you are so much stronger than you realise.
By Georgia Glover
NO. OF YEARS
SCOLIOSIS
AILIE HARRISON ART COMPETITION 2024
Thank you so much to everybody who submitted an entry to the Ailie Harrison Art Competition 2024. We have had some incredibly unique, creative and personal entries and picking a winner was extremely difficult.
Please see our 3 winners below:
Third - Madeleine van Ruiten - Age 21.
First - Lillie Boden - Age 12.
Second - Cathy Hiscock - Age 64.
And our runners up/honourable mentions:
Runner Up - Crystal Hume - Age 16.
Runner Up - Katie Braybrook - Age 21.
OTHER
AnupdateonourMembershipScheme
In order to ensure that our support reaches as many people as possible, and in recognition of rising costs, we have overhauled what was formerly our Membership Scheme.
Now, you can support our work and have access to the following services simply by completing the form on our website to set up a regular donation of an amount that you are comfortable with.
https://ssr.org.uk/join-us
ThinkingofleavingagiftinyourWill?
Scoliosis Association UK (SAUK) and British Scoliosis Research Foundation (BSRF) merged in 2023 and are now known as Scoliosis Support and Research. We promote and fund high-quality research into scoliosis and other spinal conditions, whilst raising awareness and providing support and information to people affected by scoliosis in the UK.
A Will is a way of looking after the people, causes, and charities that you care about after you’ve died. It’s the only way to ensure your wishes are carried out. If you die without a Will, you die intestate. This can cause added stress and financial cost to your loved ones. We strongly advise that you work with a solicitor when drawing up or amending your will. Gifts to charities are exempt from Inheritance Tax. They can even reduce the amount of tax your estate has to pay. Please visit the HM Revenue and Customs website for details.
Leaving a gift in your Will helps ensure that Scoliosis Support and Research can continue providing support and information to people affected by scoliosis and their families as well as funding vital and innovative research into scoliosis and other spinal conditions.
A gift in your Will can mean that people are diagnosed sooner thanks to greater awareness and better research, which can lead to improved outcomes. It can mean that those with scoliosis and their loved ones have a trusted source of information to prepare them for what lies ahead. It can mean that anyone in search of support or advice will have someone to talk to who is there to help and listen to them.
What wording should I use to leave a legacy to SSR?
If you decide to leave a gift to SSR in your Will, there are three main options:
•A percentage of your ‘estate’ (basically, the combined value of everything you’re leaving behind). This is known as a residuary legacy.
• A specific sum. This is known as a pecuniary legacy.
• A specific item.
Depending on which gift you’d like to leave, you can ask your solicitor to use one of the following texts:
For a share of your estate (residuary legacy): I give all/a share of (please state fraction/percentage) of the residue of my estate absolutely to Scoliosis Support and Research, Ground Floor, 329 Latimer Road, London W10 6RA, Registered Charity number 1181463 to be applied by Scoliosis Support and Research for its general charitable purposes, and I further direct that the receipt of any proper officer of Scoliosis Support and Research shall be sufficient discharge to my executors.
For a specific sum (pecuniary legacy): I give to Scoliosis Support and Research, Ground Floor, 329 Latimer Road, London W10 6RA, Registered Charity number 1181463 absolutely, the sum of (amount in figures, amount in words) to be applied by Scoliosis Support and Research for its general charitable purposes, and I further direct that the receipt of any proper officer of Scoliosis Support and Research shall be sufficient discharge to my executors.
For a specific item: I give to Scoliosis Support and Research, Ground Floor, 329 Latimer Road, London W10 6RA, Registered Charity number 1181463 absolutely,(write in here whatever you wish to give) to be applied by Scoliosis Support and Research for its general charitable purposes, and I further direct that the receipt any proper officer of Scoliosis Support and Research shall be sufficient discharge to my executors.
If you have any questions, please contact us on:
info@ssr.org.uk or 020 8964 5343
Hill,Pedder,andMinnsFund
Andrew Minns was a founding SSR (formerly SAUK) member and Trustee who left money to set up a fund to support those affected by scoliosis. In 2018, Mrs Patricia Hill and Mrs Daphne Pedder, long time members and supporters of the charity, passed away and left us funds. Part of their legacies have been added to the Andrew Minns Fund to create the Hill, Pedder, and Minns Fund to ensure we can support as many people as possible.
Whocanapply?
Members of our SSR community (see Membership) affected by scoliosis are eligible. Small grants are available to those who require equipment or travel expenses to appointments. The maximum amount granted is £500 and applicants can apply only once a year. Visit our website for further information:
https://ssr.org.uk/supporting-you/hill-pedderand-minns-fund/
AFarewelltoSAUK/SSR
Dear members of SAUK/SSR,
After 43 years at SAUK, now SSR, I have finally retired. It has been the greatest experience and I cannot believe how the little group, then the Scoliosis Self-Help Group, that Ailie and I founded all those years ago has become such a large organisation of national and international standing. I constantly find myself amazed by the courage you all show in the face of dealing with scoliosis, and I have been only too glad to help in some small way.
I am not deserting you completely though! I will continue to be involved with Backbone. I am also honoured to have been made a Patron of SSR and as such it will be my task to keep everyone at SSR up to date with the latest research into scoliosis, which I will much enjoy.
So, I wish Ian Nelson, the new Chair, all the Trustees, Lesley McGinty and the team who do all the hard work every success in promoting research into scoliosis and continuing to offer all of you support whenever you need it.
Stephanie Clark
EDITOR:
ELLIE WILSON
DESIGN & ILLUSTRATIONS: IMOGEN PHILLIPS
W: www.ssr.org.uk
E: info@ssr.org.uk
T: 020 8964 1166
All images are royalty free stock images, or author's own.
Printed in Great Britain by The Lavenham Press on Pure White Silk, a silk coated, high quality paper made from 100% recycled fibre and fully FSC certified. Produced using 100% recycled waste at a mill that has been awarded the ISO14001 certificate for environmental management. The pulp is bleached with a totally chlorine free (TCF) process. The Lavenham Press holds the FSC Chain of Custody certificate. SSR can accept no responsibility for the accuracy of the notices, letters, or articles in the magazine received from individuals, outside bodies, or organisations, nor does SSR necessarily endorse such views or material published in Backbone. SSR reserves the right to edit all letters and other material contained therein. © Scoliosis Support & Research UK, 2021. Registered Charity No: 1181463. Please contact us if you require Backbone in a different format. T: 02089645343