Shine Together Magazine - 60th special | Winter 2026 | Issue 38

Winter 2026 Issue 38

Shine is

60 years old! 1966 – 2026 Come celebrate with us! Plus lots more exciting Shine news inside!

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Winter 2026

Hello! and welcome to Together… …packed with member stories, updates, information, and practical advice. It's hard to believe we are so close to the end of 2026. As another busy year draws to a close, we are delighted to share some of the progress we have made together. Our membership continues to grow, now representing more than 15,500 people living with spina bifida, hydrocephalus, normal pressure hydrocephalus (NPH), and related conditions. As our community grows, so does the demand for the information, support and services we provide to members, families and professionals. To ensure we remain fit for the future and continue to meet your needs, we have been developing our new Strategic Plan, which will launch in April 2027. The plan focuses on supporting people at every stage of life, from pregnancy and early years through to adulthood, while expanding our work with people living with normal pressure hydrocephalus, professionals and decision-makers. The plan also strengthens our commitment to improving services, influencing policy and ensuring lived experience remains at the heart of research and practice. We are incredibly grateful to everyone who has helped shape this work. Members, parents, carers, volunteers, staff and trustees have shared their experiences, insights and ambitions, helping create a plan that really reflects the voices of our community. More to follow on this in the New Year! In the meantime, you can get a snapshot of where Shine is today, what we achieved in the last financial year, and where we want to go next by having a look at our latest Annual Report and Impact Report. These reports are not just about income and expenditure. They also help us demonstrate our value to funders, partners, policymakers and supporters. By showing not just what we do, but the difference we make, we can put forward a stronger case for funding, for influencing decision-makers and making sure your voices are heard.

Read the reports…

www.shinecharity.org.uk/Impact

www.shinecharity.org.uk/AnnualReport

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A personal update from Kate, our CEO After a great deal of thought, I have decided that I will be stepping down as Chief Executive of Shine on 31 March 2027. While there are still several months to go before then, I wanted to share this news directly with you all and reassure you that Shine's future is looking really positive. This is a very personal decision and not one I have made lightly, but I feel the time is right for someone else to lead the charity into its next chapter.

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support, information Leading Shine has been one of the greatest and opportunities privileges of my career. Over the years, I have you want and need. had the opportunity to meet so many incredible members, families, volunteers and supporters, and Alongside this change, we to see first-hand the difference that Shine makes will shortly be welcoming a new every day. Together, we have achieved a huge Director of Finance, Governance and Operations amount and, while there is always more to do, I am as Steve Ellen, our current Director, takes his incredibly proud of how far the charity retirement. To further support Gill, we has come. Most importantly, I believe e, CEO from 1 A n i t Shine is in a much stronger pr have also created a new Director of en l il Health and Services role. Together, a position than when I joined and these changes will strengthen is well placed to continue our leadership team and growing, developing and ensure that Shine remains supporting members for well equipped to meet the many years to come. opportunities and challenges of the future. I am therefore delighted to share that the Board has Over the next six months, appointed Gill Valentine my focus will be on as Shine's next Chief supporting our members, Executive Officer. Some colleagues and trustees, and of you will know Gill well – ensuring a smooth handover to she has been Deputy CEO Gill. The things that make Shine since July 2025 and, as part of special, our expertise, compassion, a carefully planned succession ambition and commitment to our process, we have been working members, remain unchanged and closely together to ensure a smooth will continue to guide everything we do. I am transition. Gill knows Shine, our members, our especially pleased that Shine's new Strategic Plan is services and our ambitions exceptionally well, and now taking shape as it provides a clear roadmap for I know she shares my passion and commitment to the future and gives me great confidence about the ensuring that you, Shine’s members, receive the next chapter for our wonderful charity. On a personal note, I will miss Shine enormously. This charity, and the people who make it what it is, will always hold a very special place in my heart. However, I leave knowing that Shine is in excellent hands and has an exciting future ahead. Thank you for the support, encouragement and friendship that so many of you have shown me over the years. It has been an honour to serve as your CEO, and I look forward to watching Shine continue to go from strength to strength under Gill’s leadership.

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Winter 2026

Shine is here for you… at every stage of life Our new approach

Every Shine member’s story is different. Your questions, hopes and challenges may depend on your age, your health, your family circumstances, or where you are in life. You might come to Shine during pregnancy, when your child is young, as a teenager or adult, or later in life with normal pressure hydrocephalus (NPH). We want it to be easy for you to find the right support when you need it. That is why we are shaping our services around different stages of life, so we can offer information, support and opportunities that feel useful, relevant and personal to you.

1 Pregnancy and Prenatal Support Pregnancy, diagnosis and decision-making can bring uncertainty, worry and lots of questions. Whether you are planning a pregnancy, expecting a baby, have received a prenatal diagnosis of spina bifida or hydrocephalus, or are grieving the loss of a baby due to anencephaly, we are here with trusted information, practical guidance and compassionate support.

2 Children, Young People and Families Our Little Stars programme is here for babies, young children and their families. We support parents and carers to build confidence, understand their child’s needs, encourage independence from the earliest years, and connect with other families who may be going through similar experiences. As children become teenagers and young adults, our FIRE youth project helps them grow in confidence, learn new skills and prepare for adulthood. This might include support with managing health, education, work, friendships, independence, or speaking up about what matters to them.

3 Adult Services Our Adult Services Team is here to support adults with the things that they have told us matter in everyday life. We can offer information, practical help, advocacy and opportunities to connect with others.

This could include support with housing, benefits, employment, relationships, health, wellbeing, or making informed choices about the future. We provide all of this in a variety of ways including events, one to one calls and social media. The team have connections with professionals that we work closely with to improve the opportunities and information available to our members.

4 NPH Services Shine provides specialist information, advice and support for people living with normal pressure hydrocephalus (NPH), as well as their families, carers, and professionals. Our dedicated NPH team offers practical guidance, one-to-one support, education, peer connection, and access to trusted resources to help people navigate diagnosis, treatment, and life with NPH. We also work to raise awareness of NPH, improve understanding among healthcare professionals, and advocate for earlier diagnosis and better support.

5 Health and Wellbeing Whatever stage of life you are at, your health and wellbeing matter. Our Health Team will help you understand your condition, notice changes in your health, ask questions, and aid in finding the right services and specialists. We will also keep working with healthcare professionals so members can benefit from trusted, up-to-date information and good practice.

Your first contact with Shine

Getting help from Shine should still feel simple. Our First Contact team is here to give you a warm welcome, listen to what you need, answer your questions, and help you reach the right person or team. You can contact us by phone, email, through our website or on social media. This is not about putting people into boxes. It is about understanding that life changes, and that the support you need may change too. By organising our work in this way, we hope to make it easier for every member to feel heard, understood and supported. If you are not sure where to start, please get in touch. We will help you find the right support for you. Shine is here for life!

Get in touch! 01733 555988 firstcontact@shinecharity.org.uk http://www.shinecharity.org.uk ShineUKCharity

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Thank you, Marie!

Talking of being 'here for life', in December, we are saying a very fond farewell to Marie McGonnell, as she takes retirement.

Over the last 37 years, Marie has been there for thousands of people at some of the most important and challenging moments in their lives. As a Health Adviser, and later as Manager of Shine's Northern Ireland team, she has supported generations of people with spina bifida and hydrocephalus and their families, often from the very start of their journey. Marie has been the reassuring voice on the end of the phone for parents-to-be facing a diagnosis, the trusted source of advice for new mums and dads, and a constant source of support for grandparents, siblings and the wider family. She has also provided support and compassion to hundreds of parents who have lost a baby to anencephaly. Marie's knowledge and experience are exceptional, but it is also her kindness, compassion, and genuine care for people that have made such a difference. She has never been someone who sticks rigidly to office hours. If someone needed support in the evening, Marie would be there. If attending an event at the weekend meant a family could get the help they needed, she would make it happen. Time and again, she has gone above and beyond because she genuinely cares. Marie is one of those rare people whose impact reaches far beyond her job description. She is loved and respected by colleagues and Shine trustees past and present, and held in the highest regard by healthcare professionals across Northern Ireland and beyond. For many families, she has been a reassuring constant during uncertain times. As Marie retires in December, Shine will be saying goodbye to a colleague who has given an extraordinary 37 years of service. Her commitment, kindness and dedication have touched countless lives, and her legacy will continue long after she leaves. Please join me in wishing Marie every happiness for the future and thank her for everything she has given to Shine and the community we serve. If you'd like to send Marie a message for her retirement, please email nichola.cole@shinecharity.org.uk Or write to Nichola Cole, First Contact and Charity Support Co-Ordinator at Shine, Unit 4, The Forum, Minerva Business Park, Peterborough, Cambridgeshire, PE2 6FT

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Shine out and about Working together for better care: reflections from SRHSB Amsterdam 2026. In September 2026, Shine’s CEO and members of the Health team joined researchers, clinical professionals, and experts by experience from around the world in Amsterdam for the 70th annual conference of the Society for Research into Hydrocephalus and Spina Bifida (SRHSB).

is needed, these initial findings give us real cause for optimism and suggest that spinal stimulation could become an important additional therapy for children – and adults - living with spina bifida.

There was strong interest in Shine's work, and the conference sparked several positive conversations about future collaboration, shared learning, and ways to strengthen support for our members.

You can find out more about Shine’s work around spinal stimulation at shinecharity.org.uk/pages/shine-stim

Shine was proud to have a visible presence throughout the conference. Lindsey Reid, Shine's Head of Health, co-moderated the "Seamless Transition" session, which brought together professionals, patients and advocates to explore how services can better support young people moving into adult care. Kate Steele, our Chief Executive Officer, represented Shine on the "Bridging the Gap" discussion panel, contributing the perspective of a patient organisation and helping ensure that lived experience remained at the heart of conversations about transition.

Shine’s Health Research and Information Coordinator, Jenny Smith-Wymant presented our recently published report ‘Spina bifida mortality trends in England and Wales from 2001 – 2023.’ Using the Office for National Statistics (ONS) data we were able to establish that the average age of deaths has increased, reflecting that improvements in treatment and care have improved life expectancy, but highlights that a survival gap persists compared to the general population. From the ONS data we’ve identified several potentially preventable causes of death, including urinary disease, respiratory illnesses, sepsis (from things like UTIs and pressure sores), epilepsy, diabetes, and cardiovascular disease.

Shine's specialist physiotherapist, Bronwen Warner, presented our work on spinal stimulation, an innovative therapy that we hope to roll out more widely through NHS physiotherapy services in the future. Bronwen shared what we have learned so far: the treatment is safe; babies and children tolerate it well; there are very few side effects; and it can fit into everyday family life with minimal disruption.

While this may sound concerning, it has enabled us to make targeted recommendations for proactive interventions aimed at reducing preventable causes of death whilst highlighting the importance of multidisciplinary collaboration in meeting the complex needs of adults with spina bifida.

Parents and carers, whose children took part in the programme, have reported very high levels of satisfaction.

Please share this information with your GP or professionals you are connected with. A member summary will shortly be added to our website.

Most encouragingly, we are beginning to see improvements in areas such as mobility, muscle tone, sensation, and bowel function for some children. While it is still early days and more research

You can see the full report here https://surl.li/ifjotv

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ERIC The children's bowel and bladder charity We also attended the ERIC conference with a stand to promote our continence service for both children and adults. The conference was a fantastic opportunity to connect with 250 continence professionals and share information about our services, as well as keeping up to date with the latest clinical developments. Shine's specialist physiotherapist, Bronwen Warner, also had the opportunity to present our work on spinal stimulation, particularly outlining our findings about the impact that this has had on bowel function. It was very well received by a large audience of continence specialists, and we're delighted that she was awarded third place for the project presented!

The Occupational Therapy Adaptation Conference Shine’s Specialist OT, Kathy Allen, presented at the Cardiff OTAC, highlighting the complexities of spina bifida and hydrocephalus, the need for better understanding of what aids and adaptations can help our members, and how specialist therapists at Shine can support professionals in their roles.

Kathy was also able to share more on Shine's other programmes and services, including our Touchpoint service for 0–2-year-olds; one-to-one support; and Shine’s professional membership package, which includes accredited E-learning modules for continuous professional development.

The Shine team have also attended Bladder and Bowel UK’s Symposium, SBNS 100 and the ARC conference in order to highlight our Shine services, to build our professional networks and as part of staff ongoing learning and development.

Helping us provide information you can trust Shine is supported by professionals and members who review our leaflets, guides and online information, helping us make sure what we provide is helpful, accurate, up-to-date and easy to understand. We are currently working towards the PIF Tick, a recognised quality mark for trusted health information. Achieving this accreditation will give people even greater confidence that the information they receive from Shine is reliable and meets high standards.

Could you help? We are looking for people to review our information and share their feedback. Your input will help us improve what we provide and support us in achieving the PIF Tick. If you'd like to get involved, please contact us at firstcontact@shinecharity.org.uk

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Working with others Many of the challenges faced by our members cannot be solved by Shine alone. By working alongside other charities, professionals and networks, we can help drive change, raise awareness, and ensure our members' voices are heard.

Below we showcase some of the networks and initiatives we are currently involved with…

Wheelchair alliance Shine is proud to have recently joined the Wheelchair Alliance. We know the challenges many of our members face when accessing the right wheelchair and the impact this can make to daily life. By joining the Alliance, we're adding our members' voices to a growing movement working to improve wheelchair services and create positive change. Shine members can also join the Alliance as an individual member (free of charge). https://www.wheelchair-alliance. co.uk/wheelchair-alliance-wheelchairusers-membership-sign-up

Baby Loss Awareness This October, Shine joined charities across the Baby Loss Alliance in marking Baby Loss Awareness Week. The week provided an opportunity for bereaved parents, families, and friends to remember their much-loved babies, while helping to foster understanding, support, and connection for those affected by loss. Shine supports families who have lost babies as a result of anencephaly, spina bifida, or hydrocephalus. Joining the Baby Loss Alliance recognises this important work and helps families know they are not alone in their grief. Find out more: https://babyloss-awareness.org

Griefchat – need to talk? Grief is deeply personal, and sometimes it can be easier to talk to someone outside of your friends and family about grief and the impact of bereavement of your life. This is why we offer the GriefChat service. If you hop onto our website, we have a page here where you can access the service through their chat widget: https://shinecharity.org.uk/ pages/griefchat Griefchat employs trained bereavement counsellors who will listen to your story, explore how your grief is affecting you, and help you to find any additional support you might need. It is a completely free service and is available Monday-Friday, 9am-9pm (except Bank Holidays).

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Your health information all in one place We know that keeping health information all in one place can be challenging, particularly when it is across multiple services and sometimes multiple organisations. Patients Know Best (PKB) can help as it allows you to access your personal health record online. It uses a secure platform to bring all your health data into a single patient record so you, your healthcare professionals and your carers (if you choose) can view your information in one place.

PKB also supports users to monitor and track their health condition, allowing you to take an active role in your health and wellbeing. Find out more about it here:

Information might include appointments, letters, test results and, when used, can support a collaborative and co-ordinated approach to your healthcare.

https://shinecharity.org.uk/pages/ what-is-self-advocacy-and-why-is-itimportant

Look out for our upcoming campaigns Stop the Pressure • November 2026 https://societyoftissueviability.org/community/stop-the-pressure-2026/

N a t i o n a l S e l f C a re We e k • N o v e m b e r 2 0 2 6 https://www.selfcareforum.org/events/self-care-week/

Folic Acid Awareness • January 2027 www.folicforlife.com

Shine’s campaign dates for your diary

Hydrocephalus Awareness Week

NPH Awareness Week

Go Yellow for Shine

8th - 14th March 2027

17th – 23rd May 2027

18th June 2027

Spina Bifida Awareness Week

Hydrocephalus Awareness Week

Go Yellow for Shine

18th – 24th Oct 2027

13th – 19th March 2028

16th June 2028

Winter 2026 60

CELEBRATING together!

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As part of our 60th anniversary year, we have held a series of picnics, parties and celebrations across the country, bringing together Shine members, families, volunteers, supporters and professionals to provide an opportunity to reconnect, share experiences and celebrate the strength of the Shine community that has grown over the past six decades.

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In September, we held a special anniversary celebration in Peterborough to mark 60 years of supporting people with spina bifida and hydrocephalus. The event recognised the volunteers, supporters, fundraisers, partners and staff who have helped make Shine what it is today. One of the highlights was seeing local member Maryam, whose family turned to Shine following a prenatal diagnosis, cut the anniversary cake. Maryam also enjoyed meeting the Mayor and Mayoress of Peterborough and even had the opportunity to try on the mayoral chains. Our celebrations continued in Liverpool, where we joined our longstanding partner Bullen Healthcare for a special anniversary event. Guests shared personal stories, celebrated the difference Shine has made and strengthened connections with others who understood their experiences. They also had a tour around the Shine Health Direct offices. All our events so far have perfectly captured one of Shine's core beliefs: that community is at the heart of everything we do.

We would love for you to be part of our 60th celebrations

Share your story!

You could share your Shine story, tell us what Shine has meant to you or your family, organise a small fundraising activity in your local community, or simply help raise awareness by encouraging others to learn about the work we do. Whether it's hosting a coffee morning, taking on a personal challenge, making a donation, holding a workplace fundraiser, or sharing your experiences on social media, every contribution helps ensure that future generations can access the specialist support, information and advocacy they need. Most importantly, we'd love to hear from you. The stories, achievements and experiences of our members have shaped Shine's first 60 years and will continue to inspire everything we do in the future. Share your story: shinecharity.tfaforms.net/f/sharemystory

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Employment Having spina bifida, hydrocephalus, or a related disability does not have to be a barrier to employment. However, many Shine members tell us that they face challenges finding, securing, and staying in work.

We want to take some of the stress away from members handling it alone.” Clare, Support and Developer Worker Despite having so many transferable skills, such as resilience, adaptability, and problem-solving through, common concerns include whether disclosing a disability will affect chances of getting an interview, the lack of understanding from employers about disability, and difficulties accessing reasonable adjustments or workplace support after securing a job. Whilst Shine is not an employment service, we can offer advice, information, and practical support based on our understanding of the conditions and their impact on everyday life. We can help members feel more confident in navigating employment challenges and accessing the support they need by: Providing information and resources for employers, including guidance on supporting employees with hydrocephalus. Giving members information about workplace adjustments and support available. Signposting to services such as Access to Work, ACAS, and local disability employment organisations. Offering guidance on speaking with employers about their condition and workplace needs.

Looking for Disability Confident employers is useful because you’ll be guaranteed an interview if you meet the basic conditions/criteria for the job.” Sharon, Senior Support Development Worker Find out more at shinecharity.org.uk/employment Download our 'Supporting staff with Hydrocephalus Information for Employers' booklet here https://shinecharity.org.uk/products/supporting-staff-with-hydrocephalus-informationfor-employers-digital-version Or get the print version here: https://shinecharity.org.uk/products/supporting-staff-with-hydrocephalus-informationfor-employers-print-version

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STORIES F R O M OUR Members Every journey is unique.

Over the next few pages, you’ll hear from our members who have chosen to share their stories, achievements and personal experiences. We are incredibly grateful for their openness and hope their stories offer connection, understanding and reassurance to others.

Georgina's S T O R Y I was looking for general information regarding hydrocephalus and for support, when I found Shine by searching for ‘hydrocephalus’ online. There is not enough knowledge and support out there for anyone living with hydrocephalus. Without Shine, I wouldn’t know things about my own condition and the help and support they can provide. The biggest difference being a Shine member has made to me is having my shunt alert card to carry information with me, and information to give my employer, also knowing I can contact Shine for advice. I have support if I need it from people that actually understand my condition. What I wish more people understood about my daily life is how normal everyday tasks are much more difficult, take longer, take more concentration and can mean I get very fatigued.

With Shine, I was able to pass information to my employer in a way that was better than I could ever explain myself. They have helped me when I didn’t know what challenges I would face with my condition because I didn’t understand it myself. I have learned about my condition and the challenges it brings. What Shine offers that other organisations do not are simple explanations regarding hydrocephalus.”

Dave's S T O R Y When I left school, what I do for a living now didn't really exist. I worked in accounting for several years before a combination of events enabled me to do a university course and change career. I'm an emergency planner. When you hear on the news that a major incident has been declared, I'm one of the people who writes the plans that get followed in those circumstances.

of the incident response like record keeping, coordination, managing information and working with other government bodies. We also provide a 24/7/365 point of contact into the agency with me and members of the team working on-call on a rota basis. Over the 12 years I've been with the agency I've helped manage disease outbreaks. The job is challenging, unpredictable and rewarding.

I work for the UK Health Security Agency (UKHSA) as a Senior Emergency Preparedness Manager in the National Response Centre.

Knowing that what you do makes a difference to the outcomes for people is really rewarding and makes the sometimes long hours worthwhile.

We are the focal point for all of the agency's response to significant incident and disease outbreaks. We look after the ‘nuts and bolts’

As a wheelchair user I've represented the agency across the UK and internationally, showing what people with spina bifida can do."

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Rachel’s S T O R Y I’m in my 20s (don’t look it, I know!) and live in Birmingham. I am a freelance photographer and run under the name R.A.B Photography, specialising in event, theatre, and festival photography, established while I was a mature student studying Photography at Stratford-Upon-Avon College. My 3 most notables so far have been working closely with Birmingham Hippodrome, photographing several events including Birmingham Weekender; I also work as a Young Advocate, working closely with young people to make theatre more approachable and fun, and as an Access & Inclusion Advocate whose mission is to make the Hippodrome more disability friendly. Another has been Forest Live in Cannock Chase, where I shot Becky Hill, Remember Monday and my childhood favourite band... McFly! I was on Cloud 9+ for such a long time, still am to be honest. The final was having a photo of mine exhibited in the centre of Birmingham as part of the Birmingham Open & International Day of Birmingham in September this year; this was super special as I'd grown up going into the city centre and to have had my photo on show there is a prestigious honour. I have congenital hydrocephalus with a VP shunt in situ; I’ve had 3 operations, the last being in 2010. I’ve had many times when hydrocephalus has been good to have; being an Access & Inclusion Advocate, and other times when it hasn’t; bullying in secondary school, for example. My family and I are so happy to be a part of Shine for the last 25 or so years, so photographing Shine’s 60th Celebration in

Peterborough in September this year was so meaningful to be a part of. Thank you to Kate and all at Shine for that very special opportunity, and for all you’ve done for us, as well as any support you provide in the future. Outside of freelance, advocacy and hydrocephalus, I'm currently job hunting for a role in either Marketing/ Communications or Content Creation/ Social Media. I am an avid concert and theatre-goer, Formula one and football fan. As well as walking by canals, watching TV and films (nothing too horror and nightmare inducing), and travelling within the UK. I also like to doodle in my doodle book when I feel like it, or when I feel my brain get anxiety or depression filled. I live with my parents, and I have an older brother who is married and has a 6 year old daughter, and one on the way in the new year. In the future, I hope to get more concerts under my belt and move from freelance to full-time in live event photography, touring the UK with music artists, stage shows, and festivals. In addition, I hope to continue to advocate for more awareness of hydrocephalus, making venues more accessible and employers aware that having employees with a range of disabilities isn't just a tick box and a badge to wear. Follow me on social media: @rab.photog on Instagram and TikTok @R.A.B Photography on Facebook.”

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Jude's S T O R Y Last year, Shine member Jude took on an extraordinary challenge as part of the BBC One Show Children in Need Challenge Squad. Alongside a team of young people from across the UK, he helped raise more than £2 million for Children in Need, while proudly shining a spotlight on spina bifida and the work Shine does. One year on, we caught up with Jude to look back on his experience. The highlight for me was completing the challenge as I knew the end goal would help so many people.”

Charities rely on funding so working with CIN meant I could help.”

Looking back a year later, what would make your highlight reel from taking part in the Challenge Squad?

Many Shine members will have their own goals they want to achieve. What advice would you give them?

“Getting to know everyone and making new friends and seeing them achieve so much!”

“The advice I would give them is to never give up and keep going even when it gets hard as you always have to remember the end goal that you’re working towards.”

You walked more than 8km with Sara Cox. How did you prepare for the challenge, and did anything surprise you on the day? “I prepared for the challenge by always making sure I was keeping fit in the gym and whilst playing football. I was also making sure I had a schedule in place. The only thing that surprised me on the day was the rain towards the end of the challenge.” Taking part in this opportunity meant that you were able to raise awareness about spina bifida and Shine. Why was that important to you? “This was important as I know that there are so many people with spina bifida who do not have access to the help and community they need.

Finally, what are your hopes and goals for the future? “My hopes and goals for the future are to become a football coach for professional disability or non-disability football and to continue with my Football business “Relentless IX Academy” where we also run a podcast which sees guests tell their own stories.” We cannot wait to see what is next for Jude! If you are aged 13-25 and have a goal you would like to work towards, Shine may be able to help. We offer goal-setting support and guidance please email fire@shinecharity.org.uk

Daniel's S T O R Y Before Shine, I kept thinking what life would be like without the conditions. Shine changed that. I used to think I was weak, that my conditions meant I couldn’t do anything. Shine changed that, too. I have met some incredible people that I wouldn’t have met without Shine. Thank you Shine, for making me more confident in myself and my achievements". In 2026, Dan has felt confident enough to book and begin driving lessons.

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Mehmet's S T O R Y I was born very premature and as a result of complications lost my sight shortly after birth and developed hydrocephalus for life. I didn't have a shunt until 2019, after my symptoms worsened. When my shunt was put in, I was referred to Shine. I'm grateful for Shine's support. I wish more people understood my daily challenges, daily struggles, and that it was easier accessing healthcare. Being a Shine Member means I am able to get support when I need to get advice about my shunt. Shine helped me when I couldn’t get access to my neurosurgeon and through Shine Membership, I’ve gained more insight into my condition and am able to get news updates and attend events, as well as support and advice. I enjoy meeting other Shine members and sharing stories. I hope you support Shine because they are the best at what they do.

I had a shunt malfunction a few years ago and had surgery to resolve this. Shine has helped me to get a shunt alert card and through Shine I have gained more awareness of hydrocephalus. Being a member of Shine means a lot because I can share my experience of living with hydrocephalus. The most important things I get from being a Shine member are newsletters and briefings abouts events I enjoy meeting other Shine members as we all have the same condition and can talk about this to each other. Hydrocephalus isn't understood by most people. Shine are doing a great job."

Lee's S T O R Y One from my bucket list!

I heard about Shine from a friend who works for them and decided to join to be part of the spina bifida/hydrocephalus community. Since joining Shine, I have benefited in a number of ways. I had questions about spina bifida that my GP couldn't really answer, so I received advice from Shine's medical team. I have received support regarding my medical supplies and now have them supplied by Bullens, through the Shine Direct Health service. I have attended a couple of Shine social events which were great fun, and I am also a member of the local WhatsApp group, which is a great way of keeping in contact with Shine and other members. One of the biggest things for me since joining Shine was the Bullen's Ski trip! A couple of friends had been on the trip previously, and after hearing their stories, I decided to apply for the February 2026 trip. I was so excited when I heard I'd been chosen to go! I had always wanted to try skiing, and I had never been to Italy before, so four days in Italy learning to ski really was a bucket-list thing for me! The fact that it was with other disabled people, who

were experiencing the same things as me, made it even better. The entire group was so supportive from the moment we arrived at the airport until we got back to England, made up of people from Shine, SIA, Bullen, and a few brilliant volunteers. Muu village in Northern Italy, where we stayed, was a magnificent place just a short journey from the slopes, run by lovely people, and every accommodation was set up to be as accessible as possible for us. Ski lessons and equipment were provided by freerider who were all fantastic and were able to navigate the language barrier, so it was not a problem that I did not speak Italian. I absolutely loved every aspect of the trip; the skiing, the travel, the people and the place and I am so grateful to Shine and Bullens and everyone else involved in providing this opportunity!” A big thank you to Bullen and Teleflex, who organised and made this trip possible for people living with a Spinal Cord Injury (SCI) or Spina Bifida.

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Winter 2026

Paul's S T O R Y

I was born in July 1964, just 11 weeks after my parents had just had to face the loss of my late sister, Julie, who also born with spina bifida. I was christened at two-hours-old with not much chance of making it through the day or to make anything of my life. I set out to prove everyone wrong. Growing up, I was often told “you can’t”, “you won’t”, or “you shouldn’t”. I used to think “You just watch and see.” Neither my parents nor my grandparents held me back from experiencing everything. I would say to any new parent starting out on the spina bifida journey; Don’t wrap your children up in cotton wool. Let them find their own pathway in life. Starting secondary school in the-mid 70s, I was part of the second generation of disabled children to be moved into mainstream education. It was difficult, not only as I was miles behind in my education but because there was bullying. At first, I was made to sit on the sidelines in physical education and watch everyone else. One day, they were playing cricket in the gym and I thought; “Why can’t I play?” I went over and picked up a bat and, with the aid of a runner for scoring, began giving orders, to the great surprise of the teacher. I was recruited to represent our school at the Yorkshire School's championship, where I had a go at everything and did quite well, even winning medals. I began attending a sports club every Monday and, when I was about 17-years-old, the right people started to become interested in my abilities. Suddenly, I had a coach and started formal training. I entered national championships where I did very well and was invited to join the GB athletics squad to train. In 1981, my name went on the Team GB list.

I couldn’t believe it; I was to represent my country. Me, Paul Cartwright from Batley West Yorkshire! I was straight on the payphone to my parents to share the news. I became a Paralympian and, by the age of 20, had travelled the world competing. I was the first wheelchair racer to make a Paralympic final and reached a world ranking of 5th. I have competed at various national championships, becoming GB champion and GB record holder in every distance from 100m to the marathon at some point in my career. I have trained in various martial arts for the last 30-plus years, and I have been a 2 x UK powerlifting champion, a 2 x national fishing champion as part of a team and a national pentathlon champion. I am now 62 years old (but still 34 in my own mind). I play wheelchair rugby league for a local team and still train regularly. To anyone who thinks spina bifida is the end of the road for them, it’s not. To parents who can’t see light at the end of the tunnel because of their child’s disability, believe me, it's there. With the right support, the world is anyone’s to conquer, and there is always a solution to a problem, it just has to be found.”

Winter 2026 17

Sita's S T O R Y A journey to fitness and greater confidence My fitness journey began in 2000 when I first joined a gym to lose weight. Over time, my reasons for exercising changed. Today, fitness is about movement, independence, strength and supporting my mental wellbeing. Fitness has given me confidence and a sense of empowerment. It provides a space where I can be myself and reminds me what I can achieve. One of the proudest parts of my journey was competing in powerlifting, which taught me resilience, determination and the value of pushing beyond my comfort zone. Like many people, I have faced challenges both in fitness and in life. There were times when I felt different or unsure of where I belonged. Learning to adapt exercises to suit my needs helped me stay active and build confidence in my abilities. I believe fitness should be accessible to everyone. Success is not about doing things the same way as everyone else; it is about finding what works for you. My advice is simple: never give up. Your journey may look different from someone else's, but that does not make your achievements any less important. One of my biggest achievements was completing the London Landmarks Half Marathon. It was about far more than the physical challenge. I wanted to raise awareness and funds for a cause close to my heart. Preparing for the event involved regular training and advice from people who had completed similar challenges. Their support helped me feel

ready both physically and mentally. Race day was filled with excitement, nerves and an incredible buzz. Completing the half marathon proved to me that I can achieve anything I set my mind to. It showed me that determination, preparation and the right mindset can help us achieve more than we might think possible. The importance of Shine Shine has played an important role in my life. It is more than a charity; it is a community of people who understand and support one another. That sense of belonging makes a real difference. Being surrounded by people who understand the challenges you may face, celebrate your achievements and encourage you to keep moving forward is incredibly valuable. My message to others Looking back, fitness has given me confidence, strength and a belief in my own abilities. From my first gym session to powerlifting and completing the London Landmarks Half Marathon, every challenge has taught me something about myself. I hope my story encourages others to find an activity they enjoy and believe in what they can achieve. Most importantly, having spina bifida does not define who you are or what you can accomplish. Don't let the conditions you live with rule your life!"

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Winter 2026

Harry's S T O R Y It’s all about fitness, friendship and building confidence” “Two different sports. Two different sets of rules. Two different racquets, but whether I'm playing wheelchair tennis or wheelchair squash, what I get out of both is the same: fitness, friendship and confidence. I've always enjoyed sport, not because I want to be a Paralympian, but because I enjoy being active, challenging myself and spending time with other people. There can be a perception that disabled people who play sport are striving for elite competition, but most of us simply love taking part. Playing wheelchair tennis and squash has helped me stay fit, meet new people and push myself outside my comfort zone. It's also taught me resilience, discipline and determination. Sport has a way of teaching you that things won't always go your way, but you keep turning up and giving it your best. Those lessons have been invaluable as I've searched for work. I've applied

for lots of jobs and attended several interviews, but so far, I haven’t found anything. It is frustrating, but sport has helped me stay positive and focused. The teamwork, communication skills, commitment and ability to perform under pressure that I've developed on court are all things I know I'll bring to a future employer. My coaches have also encouraged me to consider coaching qualifications. They tell me that, as able-bodied coaches, there are aspects of wheelchair sport they can never fully experience or understand. They believe someone with lived experience can offer unique insights and help others develop their skills and confidence. For me, sport isn't about medals. It's about enjoying life, staying active, building confidence and proving that taking part is an achievement in itself.”

Winter 2026 19

Chloe's S T O R Y We first contacted Shine in 2023, but didn’t need their help until 2024 when had an official diagnosis of hydrocephalus. At first, Arthur was on a ‘Watch and Wait’ so we didn’t need lots of support, just information about the condition. However that all changed and Arthur ended up needing multiple surgeries. My first memory of Shine is speaking with Shine Support Worker, Sharon who helped us so much, and provided us with support and information about hydrocephalus and shunts. We were lost, didn’t know anything about the condition and that’s when Sharon from Shine entered our life and gave us lots of support and advice. We were sent out a pack full of useful information for us and for Arthur’s pre-school and added into a local WhatsApp group with other parents. I am still in a Shine WhatsApp group with other parents which is so useful. Especially when one of us has a child in hospital. It’s a supportive group. Sharon has also provided us with so much support with DLA benefits, emotional support, and referring us to Shine’s health team. I am on constant watch out for anything. Anytime Arthur has a headache or feels poorly I panic in case it turns into a hospital stay. Also that the shunt isn’t a complete fix. Arthur’s memory is affected so we have to remind and repeat lots of things to him and we think it’s affected his bladder too. Sharon and other staff members from Shine have supported us so much. They’ve supported us with

important paperwork. But most of all, they’ve been there to listen to us when Arthur has had surgeries and hospital stays. Working with Shine has boosted our confidence in understanding Hydrocephalus. It’s a complex condition and we’ve been helped a lot to understand it and the complications from it. Being a Shine Member means the world. Shine has helped when we’ve been at our lowest. We couldn’t have asked for better support. What Shine offers that other organisations do not is that access to the Health team, physiotherapy and occupational health. They are an incredible charity who help families from diagnosis, through to surgeries and afterwards too. Shine helped when we were at our absolute lowest. Arthur had his first shunt but went on to need further surgeries. With Shine they understood how we felt and it made us feel less alone. They really do make a difference to families lives.”

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Winter 2026

Normal Pressure Hydrocephalus (NPH) Alan and Norman both have normal pressure hydrocephalus. Their personal stories highlight a condition that is still not widely recognised, despite affecting thousands of people across the UK. NPH most commonly affects older adults. It occurs when cerebrospinal fluid builds up in the brain's ventricles, causing symptoms that can include difficulties with walking and balance, problems with bladder control, and changes in memory or thinking. Because these symptoms can resemble conditions such as Parkinson's disease, Alzheimer's disease or dementia, NPH is often misdiagnosed or overlooked. As awareness grows and diagnostic techniques improve, more people are being identified with NPH and receiving treatment that can be life-changing. For many, including people like Alan and Norman, receiving the correct diagnosis and appropriate treatment has led to significant improvements in mobility, independence and quality of life. Alan's experience, in particular, illustrates how years of unexplained symptoms can be transformed by the right intervention, with the insertion of a shunt helping him regain the active life he feared he had lost. With increasing numbers of people seeking information and support following an NPH diagnosis, demand for Shine's services continues to grow. Through trusted information, peer support and advocacy, Shine helps people with NPH, and their families better understand the condition, navigate treatment pathways and connect with others who share similar experiences.

Norman’s S T O R Y

I have congenital hydrocephalus from birth, but I first connected with Shine for advice when I had a diagnosis of NPH and dementia. Shine has shown me that, although no doubt fresh challenges are ahead, I'm not alone despite living alone. NPH is not something that will go away and that is something I will have to adapt to as new challenges present themselves. With Shine, there's always a way forward, it may not be the one you would choose, but a way forward, nonetheless. There's always someone to talk to who knows what you are going through.

Shine was there for me when I received my NPH and dementia diagnosis. They are a sounding board if I ever feel overwhelmed by anything and whatever situation you find yourself in there is always someone who will listen. I have not found any other organisation that fully understood my issues as they were run by people who did not have an understanding of living with hydrocephalus. Shine is, in my opinion, is a truly unique resource.”

Winter 2026 21

Alan’s S T O R Y

It is widely known that many cases of NPH go undiagnosed. For me and many others, the journey has not been straightforward. I know that medics often confuse symptoms with Alzheimer’s, Parkinson’s and other incurable conditions that affect mostly older people. That is tragic, as NPH can be more resolvable, in ways that other life-trashing illnesses are mostly not. In my late seventies, living in France, I was showing classic symptoms of NPH, the wonderfully named Hakim’s Triad: shuffling, peeing randomly, extreme brain fog. It took a sharp-eyed radiographer, who had been instructed to look for a brain tumour, to suggest I actually had NPH. Other medical professionals I was seeing hadn’t spotted it. The neurologist tried to treat me with repeated spinal taps, a ghastly experience as sophisticated as kicking the side of a telly to get it running again. There was no referral to a neurosurgeon. No hope seemingly, so with my wife, we returned to UK, for me to fade away. After seeing my excellent GP here in Swansea, I had a private neuro-consultation (NHS waiting times were infinite, even just for a phone consultation). I was told that what I needed was a VP shunt, not repeated spinal taps. The thought of brain surgery terrified me, but in the event, I didn’t feel a thing. Life is fine since my shunt. I am finally on an NHS pathway. This was after a telephone consultation with an NHS neurosurgeon when I explained that I could not continue on the private route. I was concerned how many months it would take for a GP referral to sort out any suspected shunt malfunction. His answer was, go immediately

NPH services at Shine Shine provides a wide range of free, confidential services for people at all stages of assessment, diagnosis, or treatment for NPH: Personalised information and advice: Janet and Lydia are experienced advisers who understand NPH - its symptoms, diagnosis, treatment options such as shunt surgery, and ways to live well with the condition. J

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to any A&E, as they have the capability to resolve any issues. Phew! He told me that my shunt, a Medtronic Strata, is very reliable and does not need routine service. There is a lot of conflicting advice regarding this online, but I agree that ‘If it ain’t bust, don’t fix it’. So, if any of my symptoms recur, A&E it is. While this shunt’s magnetic settings are fairly robust, any risks come from a strong magnet being rotated or slid over the shunt valve. Professional audio headphones may be problematic, but ear buds are fine. I remain very cautious though. I avoid metal detectors and magnet-intensive MRI scans would surely throw my shunt’s settings off. Now the good news. Back in 2023. I shuffled into hospital leaning on a walking stick. A couple of days later, I strode out, no stick. Other symptoms receded rapidly. And three years later I am still doing fine at aged 83. I often wonder how many years I had unknowingly been suffering from NPH. I had so many health problems, fainting, muscle weakness and more. I’d had many interventions for symptoms, some heart-related, from the wonderful French health service, but nothing was found. None of these have recurred over the three years since my shunt op.” Support for family and carers: Carers and family members can access advice, guidance, and emotional support, recognising the wider impact of NPH.

Practical guidance and advocacy: Navigating health and social care systems, preparing for medical appointments, understanding your rights, and managing mobility, continence, and cognition changes.

Connecting with others: Shine offers opportunities to connect with people who have similar experiences, helping to reduce feelings of isolation.

Get in touch If you would like to arrange an appointment with the NPH Team, get in touch on 01733 555 988 or at firstcontact@shinecharity.org.uk www.shinecharity.org.uk/nph

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Winter 2026

Daniel's S T O R Y The call that changed everything!

I found out I had spina bifida occulta in 1995 after continued back problems. I went for physiotherapy and the therapist discovered a massive hole in my spine. Further X-rays and consultations confirmed spina bifida occulta with tethering of the spinal cord. My doctor at the time wasn't much help, so while looking for answers I spotted ASBAH (now Shine) on a hospital noticeboard and gave them a call. That original phone call made all the difference. Not only did they explain more about my condition, but someone came to my home to offer support and advice. They later helped me with a disability benefits tribunal. In short, they gave me far more than I expected at a time when I didn't know where to turn. I wish more people understood that what they see on a good day isn't everyday life. My condition can vary enormously. If I'm out and about, chances are it's a good day. The bad days happen at home and people don't see them. One thing I've learned is never to judge whether someone is disabled based on appearance alone. I went from not knowing what was happening to understanding my condition and what support was available. Shine helped me with benefits, practical issues, housing and, just as importantly, provided a friendly and knowledgeable source of support whenever I needed it. Being a Shine member means being part of a community that understands. The thing I enjoy most about meeting other members is sharing advice, experiences and encouragement with people who genuinely "get it". Shine has always been there when I've felt stuck. I'm generally good at fighting my own corner, health permitting, but it's reassuring to know that if I need guidance, Shine can point me in the right direction. Their support is based

on real knowledge, experience and practical help, not empty platitudes. Being disabled doesn't mean your life is over. It may mean finding a different route forward, and Shine helps people do exactly that. That's why I hope people continue to support their work. They helped me move from a situation where I felt lost and overwhelmed to one where I understood my condition, had my affairs organised and felt able to move forward with confidence. Some years ago, I featured in Shine's magazine because of some of the unusual things I'd become involved in. After becoming disabled at 25, I couldn't work, had a young family and was in danger of losing my home. Once my housing and benefits were sorted, I began volunteering with local disability groups, got involved in local politics and helped bring about changes I'm still proud of today. I later trained as an Access Auditor and eventually carried out an accessibility audit at Glastonbury Festival. The organisers acted on my recommendations and invited me back. More than 20 years later, I'm still involved and the festival's disabled facilities regularly receive awards. I'm proud to have played a small part in that success. But I'm equally proud to say that if I hadn't picked up the phone to Shine all those years ago, none of it would have happened.”

Winter 2026 23

Natalia A N D Maryam's S T O R Y

Our Shine story began on 1st of January 2016, during my 20-week scan, when we learned our baby had spina bifida and hydrocephalus. We were told that she might not walk, would be completely incontinent, might have learning difficulties, and might not survive the birth. We were even asked whether we wanted to consider terminating the pregnancy because we were told that her quality of life could be very poor, and possibly very short. The shock was almost impossible to describe. I began to grieve for my unborn child. No running around with her brothers, riding a scooter, or choosing pretty girly shoes. Perhaps no conversations about little things mothers dream of sharing with daughters. It was during one of my monthly scans that I first heard about Shine. It took some time before I felt brave enough to make contact. When I finally emailed, I asked if I could meet somebody who could help me understand what life might be like for my daughter. Shine staff were warm, kind and incredibly supportive. They didn’t pretend life would always be easy, explaining there could be hospital appointments, operations, medications, catheterisation and many other challenges. But they showed me something I desperately needed at that moment, they showed me hope. When my beautiful daughter was born, my grief stopped. She had surgery on her back at one day old. The information Shine had given me before her birth meant I had a much better understanding of what to expect. We attended Shine events and met other families like ours. We could talk to people who understood. We no longer felt alone. Over the past ten years, our family has travelled to more than 15 countries. Shine helped us understand what we needed to consider when travelling, including insurance and other practical issues relating to disability. I sometimes think back to what we were told during that 20-week scan; “Her quality of life may be very poor.” I think Maryam might disagree!

Last year, when Maryam’s shunt became blocked and, following the resulting operation, the shunt became infected, we spent a long time in hospital. A Shine Support Worker visited us, and I was able to get valuable information and advice. In moments like that, you realise that Shine isn’t simply an organisation that gives you information. Shine becomes part of your safety net! Today, Maryam is 10 years old. She attends mainstream school and absolutely loves it. She has many friends and is happy, bubbly, full of energy, and honestly, sometimes has more energy than the rest of us can cope with! She loves swimming and singing. Maryam is my inspiration! She is my pride! Being part of Shine’s community and seeing how they support families like mine inspired me to help other families. Together with a friend, I created the Julaybib Project, supporting families who have children with special educational needs and disabilities within ethnic communities. I also work as a parent carer representative with Family Voice, representing families like mine and helping to shape local SEND services. Shine has showed me that when families are given the right information, support and encouragement, disability does not have to mean a life of limitations. Thank you to every person who has contributed to Shine over the past 60 years! You may never know the full impact of your work, but I can tell you what it meant to one frightened mother in 2016. You gave me knowledge when I was confused and support when I was frightened. You gave me community when I felt alone.”

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Winter 2026

Shine… Here for Life! Whether it's finding answers, meeting others who understand, or accessing lifechanging support, Shine is here for people and families throughout their journey.

Molly and Rhonda’s S T O R I E S

Every family's journey with hydrocephalus is different, but for many, finding people who understand can make all the difference. For Molly, Shine's support began during pregnancy when her son Sebastian was diagnosed with hydrocephalus at 20 weeks. At a time of uncertainty, Shine helped her understand the condition, answered questions and connected her with others who shared similar experiences. Through the charity, Molly found reassurance, friendship and the confidence to navigate life with her son's diagnosis. Rhonda was introduced to Shine after her son Micah was diagnosed with hydrocephalus. Feeling overwhelmed after leaving hospital, she received information, practical advice and a welcome call from Shine. Access to specialist services and connections with other parents helped her family adjust and gave them reassurance when they needed it most. While their journeys are different, both Molly and Rhonda share the same message: knowing you're not alone can make all the difference. Through information, specialist support and a strong community, Shine helps families move forward with confidence and hope.

Dave's S T O R Y When Dave began experiencing worsening mobility and lower back problems related to spina bifida, he searched for a UK charity that could provide specialist advice. I received very good advice," says Dave. "Since then, I've contacted my GP surgery to request a referral to a neurologist." Through phone calls and emails with the Shine team, Dave found a trusted source of information and support.

continues to lead an active and fulfilling life. Being a member means he knows exactly where to turn when questions arise.

"The advice I've had is excellent, and I'm confident that Shine is the best source of advice for any spina bifida-related issues."

"It is good to know that there is an organisation with great knowledge specifically about spina bifida and hydrocephalus, where anyone affected can seek excellent advice and support."

Although mobility can present challenges, Dave

Winter 2026 25

John's S T O R Y Being a member has given me the support I need throughout my life," he says. With Shine, I am not alone." For John, Shine has been part of his life for almost five decades. His connection with the charity began in 1978 when he attended an independence course run by ASBAH, as Shine was then known.

When Deborah passed away four years ago, Shine's community provided comfort and support during a difficult time.

Through Shine, John has built friendships, developed confidence and found opportunities to connect with others. He even met his late wife, Deborah, through the charity.

"The most important thing I get from being a Shine member is being part of a community where we can share our experiences. Shine has given me, and so many others, invaluable support."

Today, John values the events, friendships and sense of belonging that come with membership.

Tanya's S T O R Y I was the youngest of 10 children, and my Mum had been taking me to doctor since I was six-months old, to no avail. She had always known that something was wrong and felt I was not meeting milestones the same way my siblings did. I had issues with my left foot turning in and walked later than the others. I needed my Achilles heel stretched when I was three-years old. Eventually, we saw a new consultant who blurted out that I had spina bifida. I was 9 ½ years old. It was in my records, but we had never been told! She referred me to The Royal Victoria Hospital in Belfast where I had a dye test on my spine and scans etc. They said I needed surgery the following day. A case worker from Shine (then, ASBAH) arrived at my home soon after and explained all about spina bifida to my Mum, who was really pleased as it had never been explained at the hospital. My journey with Shine had begun! Being a member of Shine has made a great difference to me. It was a Shine support worker who signposted me to the Spina Bifida Clinic. I was 37 years old at that stage and was at a Shine event, when I talked about the difficulties I was having with my foot. They explained how to get referred and I have never looked back. Getting access to this clinic was lifechanging for me as they were so tuned in to my needs. I was referred to Dr. McCann, and he arranged surgery to reconstruct my foot. I attend all of Shine’s social events that I can, and one of them started my love of archery. I got hooked, joined the archery club near me and, eventually, became County Champion and NI Disability Champion twice!

I recently talked to my Spina Bifida consultant about exercise to help with both weight and pain management. She wrote to my Shine support worker, asking for help with this. I had previously really enjoyed swimming, but I hadn’t exercised since before the COVID-19 pandemic. I was anxious about starting off again. Shine managed to source a private Hydrotherapy pool not far from my home, which was run by two physiotherapists who really understood my needs. Shine applied for a grant to cover the cost of the assessment and nine hydrotherapy sessions. This was a huge relief to me as I could not have afforded to go otherwise. The sessions have been amazing. The heated pool has given me great pain relief, the range of exercises devised specifically for me have really helped, and my confidence has increased.What I wish for is that more people understood about my daily life is the pain that I go through as it’s so hidden. Being part of the Shine family has helped with this, and it has also helped me feel less isolated. Last year I celebrated my 50th birthday and am proud to be a Shine member for 40 of those years and hope to continue for many more years to come.”

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Winter 2026

Recognising those who make a difference to the hydrocephalus community As part of Hydrocephalus Awareness Week, Shine is proud to launch a new professional award in memory of Erik Mueller, a valued Shine member. Created at the request of Erik’s family, and developed in partnership with them, the award celebrates a professional who has made an outstanding contribution to the lives of people living with hydrocephalus. The person you nominate could be your GP, neurosurgeon, nurse, therapist, teacher, or any other professional who has gone above and beyond to provide support, improve care, or help people with hydrocephalus live fuller and more rewarding lives.

How to nominate someone… To submit a nomination, please complete the form and provide: Your name and contact details The name, title and contact details of the person you are nominating Up to 300 words explaining why you believe they deserve to receive the award Make your nomination here https://shinecharity.tfaforms.net/f/ErikAward If you would prefer support with completing the nomination form, simply indicate this on the form and a member of the Shine team will contact you to discuss your nomination. Closing date: 15th February 2027

THE

AWARD PRIZE The winner will receive:

A commemorative certificate A £100 voucher This award is an opportunity to recognise and thank the professionals whose dedication makes a real difference to the hydrocephalus community.

Who was Erik? Erik’s family write: Erik was taken from his family far too soon. Born prematurely in 1992 with congenital hydrocephalus, he faced significant challenges from the very start, but his determination and resilience defined his life. Despite surgeries and setbacks, Erik flourished in education and developed a passion for travel and adventure. Together with his wife and their three children, he explored the world, creating memories that his family will treasure forever. Erik lived life to the fullest. As a teaching assistant supporting children with special educational needs, he brought understanding, encouragement, and hope to countless families. A devoted son, husband, father, and brother, he was also a passionate advocate for disability rights. Although he died at just 32 following complications of hydrocephalus, his courage, kindness, and positive impact on others continue to inspire those who knew him."

Winter 2026 27

A Shine service

Why request my medical records? People request records for many reasons. You may want to understand what happened during treatment, check information recorded about your care, seek a second medical opinion, make a complaint, support an insurance claim, or explore whether there are grounds for a legal claim. Can I see my medical records? In most cases, yes. Individuals generally have the right to access their medical records. Parents may also request records for their child where appropriate, and records can sometimes be requested on behalf of another person with their

written consent. Different rules apply when requesting records for someone who has died. How do I request my records?

You can usually make a Subject Access Request (SAR) to the NHS organisation or private healthcare provider holding your records. Requests can often be made online, by email or by letter. Will I need identification?

Yes. Because medical records contain sensitive personal information, healthcare providers will usually ask for proof of identity and address before releasing them. This helps keep your information secure. How will I receive my records? Many organisations provide records electronically through secure email or online portals.

Cla ire

What are medical records? Medical records are information healthcare professionals keep about your care and treatment. They may include GP records, hospital notes, clinic letters, test results, scan reports, operation notes, prescriptions, referral letters and discharge summaries.

Our le

Legal support

itors… olic s ad Ka t

Some may still provide paper copies, and medical imaging such as X-rays, CT scans or MRI scans may be supplied separately. What if my records are incomplete or out of order?

Medical records can be lengthy and are not always arranged in date order. It is common to find duplicate documents or records from different departments presented separately. How can medical records help? Accessing your medical records can help you understand your healthcare, answer questions about treatment you have received, and make informed decisions about any next steps.

Our Legal Service is here if you need us! If it ever feels useful to talk things through, contact us on 01733 555988 or at www.shinecharity.org.uk/legal

Join Shine Health

Today!

Shine Health Direct is a dedicated home delivery service that provides Shine members with all of their urology and stoma products and prescription medication, efficiently and discreetly to their door or to a place that is convenient for them. We have worked hard to develop this innovative service so that it will benefit Shine members.

It's as simple as 1, 2, 3...

1 Registering with Shine Health Direct is a breeze. Just tell us what you need, and we handle the rest – even liaising with your GP!

2 Your dedicated personal advisor will reach out to you on a pre-arranged date, ensuring a seamless ordering process for your products and medication.

3 Sit back and relax as your essentials are swiftly delivered to your doorstep by a local driver or courier – discreetly and without hassle. DON'T JUST TAKE OUR WORD FOR IT…

Amazing service. Makes life so much easier!”

Register for Shine Health Direct today! Call 0800 023 8857

Email info@shinehealthdirect.org

Visit www.shinehealthdirect.org

You give an all-round friendly, helpful and reliable service”

Existing Shine Health Direct member?

You can contact us about your orders and other enquiries using the details here.

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Get involved and Shine! Many of Shine’s services are entirely funded by the generosity of donors and fundraisers. Our specialist support services are available pre-birth, at the point of diagnosis, and to children, young people and adults living with spina bifida and/or hydrocephalus across England, Wales and Northern Ireland.

Here are some ideas of ways you could get involved and support Shine… Be a regular give

r...

Your monthly dona tion could help us to pl an for the future, visit shinecharity.org.uk /donate for more details.

Go Yellow for Shine...

Whether you wear something yellow, bake

seeds or sell lemonade just GO YELLOW.

Play to win...

friends, Challenge your ues family or colleag to a quiz, bridge deo tournament or vi game marathon.

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Show off your creativity! an arts and crafts sale, fancy dress party or bake sale.

Seasonal silliness!

You could do anything fro m an Easter egg hunt, to a Eurovision sweepstake - a summer stroll or a santa da sh - take your pick!

Feeling lucky?

Enter our weekly ith Lottery to be in w ng a chance of winni up to £25,000: /lottery shinecharity.org.uk

However you choose to support Shine we are here to help you, please get in touch by email at fundraising@shinecharity.org.uk or call on 01733 555988. www.shinecharity.org.uk/getinvolved

30

Winter 2026

For 60 years, Shine has provided free support to our members, and we couldn't do this without the incredible support of our donors and fundraisers. As we celebrate our legacy, we are also looking ahead, ensuring that future generations can continue to access the specialist support, information and advocacy they need to thrive. In our 60th year, and beyond, there are many ways you can support Shine. Please take a look at our website www.shinecharity.org.uk/getinvolved, contact our fundraising team by email (fundraising@shinecharity.org.uk) or phone (01733 555988)

Thanks

to our

Fantastic Fundraisers!

Over the past few months many of our fantastic members, their families and friends, have been busy raising money and donating to Shine. On behalf of everyone at Shine we’d like to say a HUGE THANK YOU to each and every one of you for everything you did and all the money you raised!

R £2 ais ,8 ed 70

R £1 ais ,1 ed 32

Samuel, Isaac and April Ran in the Mini Gear race

R £2 ais ,4 ed 11

Charlie Philips and family took part in Cardiff Half Marathon

Lucy Hall successfully completed the Yorkshire 3 Peaks challenge

R £3aise 77 d

Brenda Lee organised a 5K and 10K run with her local running club

R £5 ais ,4 ed 10

R £1 ais ,1 ed 22

Darren Machen and friend Neil completed WALESDURO, cycling on and off-road 300km

R ai £4sed ,0 o 00 ve r

R £2 ais ,4 ed 37

Here are a few highlights of how some of our fundraisers have supported us…

Greencore took part in the Spalding Flower Parade as The Greatest Showman, and other fundraising

Hayden participated in the TCS Mini London Marathon in his wheelchair

Sita Patel took part in the London Landmarks Half Marathon in her wheelchair

Become a regular Shine supporter Many of our supporters choose to give a monthly donation to Shine. Every gift helps us keep our free services going.

It’s very easy to do!

You can donate…

1 Via our website: www.shinecharity.org.uk/donate 2 Over the phone: call 01733 555988 3 By cheque: Make payable to ‘Shine’.

Send it to Unit 4, The Forum, Minerva Business Park, Peterborough PE2 6FT (but please don't send cash - it's not safe!

Winter 2026 31

Buy a limited edition 60th anniversary bear! Now le b availau to for yoy! bu

An idea Christm l as gift!

Christmas cards! Now available and ready to buy!

www.shinecharity.org.uk/ christmascards

https://shinecharity.org.uk/products/benny-bearlimited-60th-anniversary-edition

Why not take advantage of Shine's free will service? It's a simple way to protect the people you care about, and also leave a gift that could be a lifeline for someone living with spina bifida, hydrocephalus, NPH or a related condition. Write or update your will for today free Scan the QR code or go to: https://ow.ly/kpTB50ZKkEw Or call 020 4525 3605 and quote ‘Shine’

Get Ready to Give

1 s t – 8 th D e c e mb e r 2 0 2 6

Did you know that your donation to Shine could be doubled from 1st - 8th December this year? Shine is taking part in The BIG GIVE, and we’d love you to get involved. Check out the back of this edition or scan the QR code to find out more.

www.shinecharity.org.uk/christmas

Order now!

Now

THIS

Double

YOUR

IMPACT

Every between£11 you give Decembesrt and 8th DOUBLEDwill be NO EXTRA AT C TO YOU! OST

CHRISTMAS

Save the Date: 1-8 December 2026 This December, Shine is taking part in the Big Give Christmas Challenge, the UK's largest match-funding campaign. For just one week, every donation made through our campaign page will be matched pound for pound. That means a £10 donation becomes £20, £25 becomes £50, and £50 becomes £100. Your support will help keep Shine's First Contact Helpline available for anyone seeking information, reassurance and understanding when they need it most.

Find out how to take part

How to take part… It's as easy as 1, 2, 3...

1 Save the challenge week in your calendar… 1-8 December 2026

2 Visit our Big Give campaign page during challenge week… Scan the QR code or visit the web address.

shinecharity.org.uk/christmas

3 Make your donation… Give whatever you can

during challenge week and watch your donation double

Shine offers someone to reach out to, who will listen and support you. They were there for us in a time that felt so dark and bleak. They really do shine a light to help guide you through."

One gift. Twice the impact. Every donation will help Shine continue answering calls, emails and messages from people affected by spina bifida, hydrocephalus and related conditions.

Save the date today and help us make the most of this year's Big Give Christmas Challenge.

Here to help...

Please do send any comments or enquiries to us: Shine, Unit 4, The Forum, Minerva Business Park Peterborough, Cambridgeshire, PE2 6FT

01733 555988

firstcontact@shinecharity.org.uk

http://www.shinecharity.org.uk

ShineUKCharity

©Shine Registered Charity No 249338 Company Number: 877990

No content can be re-published without the prior consent of Shine, but Together is here to be shared far and wide, so do shout away and share articles online! DISCLAIMER: Every effort has been made to ensure that the information in this magazine is accurate at the time of publishing. The information provided does not constitute legal or professional advice, and opinions expressed are not necessarily those of the publisher.