Sally’s Love of Art.
Changing people’s perception
Hydrocephalus Awareness Week
Celebrating our success
Shine Sports
Meet our sporting members
Shunt malfunction
What you need to know
Save the dates!
Spina Bifida Awareness Week 16 - 22 Oct 2023
World Spina Bifida & Hydrocephalus Day 25 Oct 2023
Hydrocephalus Awareness Week 4 - 10 Mar 2024
Plus lots more exciting Shine news inside!
Summer 2023
Issue 32
2023 already! Can you believe it?
I am in the throes of drafting our annual report, which gives me time to reflect on our successes, highlight the work we have done, review what didn’t go so well, and plan how we can continue to provide and improve the services you have asked us for.
Nothing happens without people. This year, we have invested more in our services, and recruited new staff to meet the growing demand for support, advice and engagement from almost 13,000 children, young people and adults who are registered with us, as well as from families, friends, professionals, volunteers, and supporters.
This Summer edition of ‘Together’ showcases some of the work, projects and events we have been involved in or are planning, as well as sharing stories of Shine members from across England, Wales and Northern Ireland, alongside useful tit bits of information and links to other services.
Enjoy the read! Best wishes, Kate
Thanks to some of our members, we have produced and launched a video and supporting guide to understanding non-visible disabilities, and improving how members living with disabilities, that can’t always be seen, are treated.
Coupled together, the video of our members sharing their stories and the guide which provides a framework for discussion and reflection, can be used to help your friends and families understand the challenges you sometime face in every day live.
It is also a great resource to use with your medical professionals, who need to better understand what you might be going through, or with your employer to improve your working environment and relationships with colleagues.
In March 2023, the Government announced changes to financial support for people with disabilities, and a greater focus on getting people into work.
Scope has provided a useful summary on its website. Please click or scan the QR code for more information
The changes won't happen overnight, and Shine will be keeping an eye on developments and updating you as and when we can.
Go-Kids-Go is a small charity that offers free wheelchair training to children and young people all around the UK. We’re told their courses are great fun, and you can attend as many courses as you like. Go to www.go-kids-go.org.uk for more information.
In the meantime, if you have any questions or are at all worried about how these changes might affect you, please contact us for support.
With the aid of our newly developed e-learning modules, Shine is aiming to reach and upskill more health, care, education, and other professionals to better understand your conditions, and improving support through prevention and changes in practice.
From the comfort of their own desks, any professional will be able to access our online learning modules, that are accredited for continuous professional development.
Available now!
• Spina Bifida
• Hydrocephalus
• Neural Tube Defects – antenatal e-learning
• Spinal Dysraphisms and Spina Bifida Occulta
Coming soon!
Normal Pressure Hydrocephalus
All that is needed is to sign up to Shine’s free Professional Membership and receive a link to register for the courses. Click or scan the QR code for more information
Please let the professionals you come into contact with know and ask them to spread the word amongst their colleagues too.
With Summer approaching, we wanted to put a spotlight on some of the social groups that have started back after the pandemic.
Shine Social London - monthly get together for our adult members
Shine Social London went to the David Hockney exhibit at the Lightroom in Kings Cross. Having spent an hour enjoying Hockney’s work in a fantastic accessible setting, we then caught up over a cuppa and some doughnuts!
Sêr Bach/Little Stars in Wales
After three long years, it was lovely to meet with our families at St Fagan’s History Museum in Cardiff. Everybody had grown so much, not just in stature but confidence too.
Northern Ireland Coffee and Chat for adult members
The team held a meet up at The Junction – Halt Coffee Shop in Dungannon recently for adult members to get together, share stories, discuss challenges, find solutions to problems and … have a laugh! We try to meet monthly and find new and interesting places to visit across the capital.
Keep an eye out for more events – online or face to face. Click or scan the code for the latest details.
Here’s what John and his wife Liz thought after their first time out with Shine Social
“Thank you so much for organising. We had a lovely time. Everyone was so welcoming, and it didn’t seem to matter if we chatted away or not. It’s been a long-time persuading John to get out. But I think also the fact the group was smaller really helped him. He really loved it”
As part of Shine’s continued investment in our services to members, we are delighted to announce the appointment of Lindsey Reid as Deputy Health Manager.
The role is newly created and will support the current team both in dayto-day health enquiries, and to develop new and more responsive services for our members.
Lindsey is an OT with many years’ experience working with disabled children and adults, including rehabilitation. Lindsey has a particular interest in mental well-being and pain management and will work with our staff in all three nations to identify the best way of meeting the needs of our members and support the SDW service.
Lindsey’s appointment is in addition to that of Alex Preston, who joined us in March as our Health Support Officer.
Alex is a Registered Children’s Nurse, with experience of disabled adults from the Care Sector. She also has a master's in psychology and has a special interest in sensory processing and mental wellbeing.
Alex has started joining some of our online groups, to add a health perspective, so do look out for Alex popping into your group! Alex will work with Lindsey to help identify new opportunities to support our members with health issues and create new resources.
Lindsey and Alex join Kathy Allen, our OT, and Bronwen Warner, our physio, and Brenda Cheer, our children’s continence specialist nurse, who many of you will know from Little Stars Touch Points and some of our groups.
We are starting to plan some new online resources to support parents, adults and professionals with practical advice on sensory processing, housing adaptations and many more.
The Health Team would like to thank Shine's Board of Trustees for their support in increasing the Health Team’s capacity, at a time when the need for our service has never been greater.
Many of you will have met or had contact with Helen, as she has worked for Shine in Wales for 7 years.
Helen has recently been appointed as our National Programmes and Membership Engagement Manager. Continually striving to improve our services for you, this is a new role created primarily to support the delivery of our strategic goal 4: Connecting Communities, which drives our ambitions for:
• Greater engagement with our members to inform and shape the services we offer
• Increased opportunities for our members to connect with one another and make lasting friendships
• Recruitment and support for volunteers
• A national programme of events and social gettogethers, including our annual awareness weeks
Building links with members of all ages, who are keen to get involved in shaping our services or wanting to volunteer, is central to Helen’s work as the greater the input and engagement we can have with you, the better the work we do can reflect what you want and need us to do.
You can contact Helen on 01733 555988 or helen.allen@shinecharity.org.uk for further information on how to get involved.
At Shine, we offer dedicated support to help us ensure that our members’ needs are being met educationally.
This is fully bespoke for each member and our Education Officer, Aimee Cave, works with parents/ carers individually to know where any difficulties may arise with schooling and what we need to do to ensure that the right support is in place.
Aimee can help deliver training for schools, attend meetings, help with EHCPs and support schools to ensure their provision is right for our members, amongst many other things!
Aimee is new to post and is working hard to expand our educational offer, currently building on our existing training package for schools, setting up regular webinars for parents and schools on a variety of topics, and later in the year will be launching the Spina Bifida Friendly Schools’ Award and the Hydrocephalus Friendly Schools’ Award.
“I love working for Shine! It is an absolute pleasure to support our younger members and their families to ensure that the provision is right in school - this is a real passion of mine!
Having worked as a SENDCO for the last 7 years, I’m thrilled to now be able to support Shine’s members to get the help that they need to allow them to become the next generation of talented young adults.”
You can get in touch with Aimee, in relation to any educational support that you may need, at: aimee.cave@shinecharity.org.uk
We’re excited to be developing our plans to work more closely with our teen members. Last month, we welcomed Maddy to our team, who has a vast amount of experience and passion for working with young people.
“When I was doing my recent job hunt, it was incredibly important for me to find an organisation that aligned with my values. When I saw the Shine interview process and found that I would be interviewed by a youth panel – I knew that the role was a good match.
I have really enjoyed my first month working at Shine, and I am looking forward to getting to know all of our teen members and their loved ones much better over the next few months.
The teen project is new, which means that we have a lot of scope to shape it into what our teen members want and need. You will see more opportunities to get involved as the months progress, and I am excited to be on this journey with you all.
If you are the parent of a teen member of Shine, you might be interested in joining our Supporting your Teens whatsapp group.
Maddie Powell, Youth Voice and Engagement OfficerMeet Rowena Coote, who was diagnosed with Normal Pressure Hydrocephalus (NPH) in 2020. We asked Rowena to share her NPH journey…
What was the journey to diagnosis like?
It started with symptoms of loss of balance and falling, short term memory, headaches, and nausea. I booked an appointment with my GP, explained my symptoms and she examined my gait. With NPH suspected I was referred to Derriford.
In 2020 after several scans, the Neurologist diagnosed me with NPH. 18 - 24 months later, I had a shunt fitted.
How did you feel about getting the diagnosis?
Initially terrified, thinking the worst, but after the diagnosis, I felt some relief. Anything to do with my brain feels terrifying. What will they do? How will they do it? I didn’t want anyone messing around with my brain, but Mr. Jeffrey and his team were amazing, and I had total faith in them. I surrendered and gave my body over to them. I thought, it’s got to be done and that’s that.
My partner was anxious following my diagnosis, so I kept my worries and fears to myself, and in some ways, it helped as I just had to get on with it. I had to be strong, as I have been my whole life and I am proud of my resilience.
strength didn’t let me give up. You’re stronger than you think you are.
How has Shine supported you?
I joined the NPH group – being able to speak to others going through the same thing as me helped. Others don’t really understand, so being able to share this with people that get it really helped.
I’ve joined some Zoom events. I enjoy being part of this group. Shine joined me up with another member with NPH, who is a little older and not tech savvy, so it was nice to be of help to somebody else.
Shine provides support and information to people awaiting diagnosis, or having had a diagnosis, of NPH.
Click or scan this code to learn more
Shine also offers
1 1-2-1 support for individuals on an NPH journey and for their for carers/families
2 Access to a NPH WhatsApp group - a place to ask questions, share and support each other.
3 NPH Zoom events. Join us to listen to guest speakers, and gain insight and advice from the Shine team. A welcoming place to develop friendships. https://www.shinecharity.org.uk/ national-events/shine-events
4 Links to other members for peer support
Contact us on 01733 555988 or firstcontact@shinecharity.org.uk to find out more.
Challenges of living with NPH?
My short-term memory. I have occasional headaches, but nothing compares to what it once was.
Have things improved since you had your diagnosis? Yes- everything has!
Any message for others newly diagnosed with NPH? Try not to be afraid. There is light at the end of the tunnel. I didn’t know I could do this, but my inner
Normal Pressure Hydrocephalus (NPH) occurs with a build-up of cerebrospinal fluid (CSF) in the brain’s ventricles. It is a condition which mainly affects people over 60.
NPH is associated with several symptoms, including difficulty walking, cognitive impairment/ dementia, and urinary incontinence.
“… Try not to be afraid. There is light at the end of the tunnel. I didn’t know I could do this, but my inner strength didn’t let me give up.…”
Sally used her natural artistic talent to change people’s perceptions of her disability and inspire her future career!
When I first speak to Sally, I can hear so much enthusiasm in her voice for her art. Sally tells me that art has always been her motivation, her ‘spark’. From a very early age, she knew she had a talent.
When Sally started school, she quickly realised that she was going to be labelled as ‘the girl with Spina Bifida’ or ‘the girl with the disability’. She was adamant that was not how she wanted to go through life and saw that her talent for art could help change that. By focusing on her love of art, Sally helped her friends to see beyond her Spina Bifida and instead she was seen for her natural skills and talents.
Sally has a natural determination to show people what she was capable of and to not let her condition guide her experience of life. Sally tells me about the time she was completing her Duke of Edinburgh award in the mud and the rain. One of the teachers offered to allow her to skip that part of the course and have a lift back to base, but Sally refused and completed the course alongside everyone else.
There have been challenges – for example, moving from classroom to classroom carrying a load of books is never easy so Sally got herself a case with wheels to make her life easier!
I asked Sally what, other than her love of art and her need to pay the bills, inspired her to become a teacher…
1 Sally had a really positive school experience. Her teachers had ‘can-do’ attitudes, encouraged her art, and helped find workarounds to any challenges and barriers Sally came across.
2 She wasn’t particularly academic, and she worked really, really hard to pass her exams, and she knew she could use her experiences to encourage others to succeed too
3 She wanted to put her own insight and experience of living with a disability to good use, to support children and young people with disabilities in understanding the wealth of opportunities that exist, how learning to drive and earning money and/or applying for PIP can give so much independence, and allow them to make the choices that are right for them.
After her GCSEs, Sally went on to do ‘A’ level art and a degree in the subject too. That is all she wanted to do. However, as with so many things in life, Sally knew that being good at art, and having a degree in the subject, was not going to pay her bills.
Much to her parents’ concern, she decided her next move was to Liverpool and do a teacher training course. Like most young people, Sally had never been away from home, and never lived on her own. But she moved away, completed the oneyear course and secured a teaching job – in art, of course – in a secondary school.
If you’re feeling apprehensive about leaving education, unsure about what to choose, Sally offers this advice:
“Think about what you can do, what you are interested in and work backwards from there. What steps do you need to have in place to get to where you want to go.
Know your limits too.
Be honest and upfront with employers. They can’t make reasonable adjustments or support you in your new role if they are not aware of your disability’’.
“
… By focusing on my love of art, it helped my friends to see beyond my Spina Bifida and instead I was seen for my natural skills and talents…”
“We have all heard the messages for many years encouraging us to be more active and healthier. But it’s not just about the physical benefits. It’s also the impact it can have on your mental wellbeing.
I wasn’t encouraged to play sport at school; this was a mixture of my parents not encouraging me and the teachers not knowing how to include me in PE lessons.
It wasn’t until my left leg was amputated that my passion for being active and particularly being outdoors was ignited. I started to play golf, a sport I always wanted to play with my brother but was unable to do. It’s a sport I continue to play now and though I’m no Tiger Woods, I enjoy the challenge golf brings and being out playing with friends and family. It’s good for my mental as well as physical health. Over the years I’ve done activities from hill walking and cycling to sitting volleyball and fencing. In the 90s I changed career from being an electrician to study sports science as a mature student, and went on to work as a sports development professional, developing opportunities for disabled people to get active.
I know first-hand the difference being active can make to a person's life.
I was never going to be a Paralympian, I just enjoy having a go, then chatting with friends over a drink, and laughing about our efforts.
Never let anyone tell you that you can't do an activity, tell them instead to ask you what you can do. There is a sport or activity out there for everyone, its just finding the thing you enjoy.
To mark forty years since I had my leg amputated, I am going to take part in a challenge to play 72 holes of golf in a day and raise money for Shine!”
What is rugby league? Where is it played?
PDRL (Physically Disabled Rugby League) is a form of Rugby League, where every player on the pitch has a disability, affecting their strength, speed, or coordination. Right now, there are 9 domestic PDRL clubs competing in the English league, and international teams representing Wales, England, Australia and New Zealand.
What do you see as the benefits/why recommend it to others?
The biggest benefit to me is being surrounded by people who are disabled, and who understand the nature of disability. PDRL lets us exercise in a safe, controlled environment.
It also lets us meet some of the very few people in the world, who live with the same disability. I don't think there's anything more meaningful than playing alongside, competing against, watching and learning from people who face the same daily challenges that you do.
In my experience, all you need to get started is a tracksuit, a pair of trainers, and somebody to help you travel to a training session.
What would you say to other members who might want to try this?
Check out some matches on YouTube, and see what it's all about! Almost everyone in PDRL moves around the pitch in a different way. If you see someone who looks and moves the same way you do, then chances are that they have a similar story to yours! No matter what you look like, or how you move, your local PDRL team definitely has a place for you, and can help you figure out how to get involved in Rugby.
What is Frame Running?
It is a 3-wheeled running bike, and I have to propel myself forward to run in a race.
How did you get into it?
My mum found a taster session. I tried it and enjoyed it. I’d always liked running but then suffered an acquired brain injury when I was 12 years old, which led to me developing hydrocephalus. Spending 6 months in hospital and 3 months in rehab, my physical health was really impacted. I had to learn to walk again. It also affected my mental health.
What do you love about Frame Running?
The sport is brilliant for both physical and mental health. It is also a very sociable activity. I have made lots of friends.
It can be quite expensive to do if you want to perform at the level I do but it can be done for fun too. My first frame was lent to me by CP Sport until I was certain that I wanted to continue, and since a couple of Trust funders have supported me with new frames.
What would you say to other members who might want to try this? ‘Go for it! It has opened a lot of doors for me’.
Find out more at: https://cpsport.org/frame-running
Karl • runner
What made you start running and how long have you been running?
I started running on the treadmill at the gym - no particular reason other than to get a bit fitter and healthier. I then went to Parkrun when it started locally. One of my old school friends invited me to attend the local running club with them - and it just progressed from there!
What sort of distances do you run and how often?
I now run all sorts of distances - regular short runs and 5ks and 10Ks quite often. I have also run a fair few half marathon - including Cardiff Half TWICE for Shine!
Is there anything you need to be careful of, running with Hydrocephalus?
Just remember to stay hydrated.
What would you say to other members who might want to try this?
To anyone else that wants to give it a go - go for it - virtually all running clubs are inclusive, and you'll always find someone at the same pace as you to run with!
Although shunts have saved hundreds of thousands of lives since first being used to treat hydrocephalus, life with a shunt can be complex and the fear that the shunts can malfunction is one that our members share with us often.
At Shine we’re often asked, ‘how long do shunts last?’, Well, there’s no simple answer. The material they are made from, silicone, is very flexible and hardwearing, and many of our members tell us they’ve had the same shunt for 30 years or more. Sometimes they are told by clinicians ‘You’re probably not even using it any longer!’ and while this may be true for some, unless the shunt has been carefully examined, it’s not a safe assumption to make.
Adult members have become very ill when the shunts they’ve had since infancy have suddenly malfunctioned, and the idea that the shunt is redundant could lead them to delay treatment. So, unless your shunt has been demonstrated to be no longer working, and you remain well, we would say ‘never say never’. Any sudden increase in head pain or new, unusual symptoms should be checked out. In hospitals, shunt malfunction should be ruled out in the beginning, rather than the end.
Many people do not show ‘classic’ signs of raised intracranial pressure, so, if you’re concerned it’s your shunt, don’t be afraid to speak out. You know your body, and your health. MRI can often reveal areas of the brain under increased pressure, but ventricle sizes may not change.
A shuntogram is a simple procedure in which dye is injected into the shunt, and a series of timed X Rays taken to see how far, fast and in which direction the dye moves through the shunt.
Finding out that the shunt is broken or disconnected during a routine check can raise a lot of anxiety.
Nowadays, most centres have stopped routine appointments for adults with hydrocephalus- if people think their shunt is malfunctioning, they (rightly) should not wait for the routine appointment to seek medical advice; also, people who become unwell in the days following a routine appointment sometimes delay seeking advice, as they feel the shunt is unlikely to be the cause of the symptoms.
The shunt may have been disconnected for several years, and if you are symptom-free the shunt will not usually be replaced. “Treat the person, not the scan” is the motto. However, after a lifetime of believing shunt malfunction is a life-threatening emergency, it can be very hard to adapt one’s thinking to accept you don’t need a shunt.
Anxiety can increase the severity of pain and amplify every headache. It can take a lot of reassurance to adjust to this new situation.
Implantable telemetric sensors are making it easier to detect raised intracranial pressure, whether the shunt is working, and even which end is blocked, without the need for invasive Intracranial Pressure (ICP) monitoring. They are currently used in adults, owing to their size, but shunt manufacturers are constantly innovating; hopefully such invasive tests will become a thing of the past for all.
During Hydrocephalus Awareness Week we featured many of our membersʼ stories about living with Hydrocephalus including James who outlined his life in numbers, pros and cons.
Here is his story in detail if you missed it during our awareness week.
James is 25 years old and has had around 25 brain operations since being born.
“My first shunt fitted at 3 months old, first revision at 8 years old, (Then every 2 years after that more or less). In this time, I’ve had 2 brain hemorrhages, many infections and blockages. However, this hasn’t held me back, I completed my GCSEs and A levels and have 3 degrees with over 100 professional articles published.”
I have published over 200 articles for numerous publications and been featured in The Times, Guardian, JURIST Legal News and Commentary, and The Law Society Gazette; where I have written on many subjects linked to my disabilities and having Hydrocephalus. I have also assisted with setting up an association to help access the legal profession when you have disabilities, as well as working with The Law Society. My articles include writing on access to the legal profession, disability and the bar, international law, and international relations as well as breaking news stories on things such as Brexit, Russia’s war in Ukraine, Afghanistan, and UK politics, as well as on atrocity crimes.
I work in International Humanitarian law and Academics, with a special focus on atrocity prevention,and with Parliament on genocide prevention and atrocities against the Hazara in Afghanistan. The Hazara are an ethno-religious group, who are persecuted for who they are and their beliefs, and I work with the UK Parliament and the House of Lords who meet to discuss many issues. The group I run looks at the atrocities committed by the Taliban against the Hazara and how to prevent them and protect the Hazara community in Afghanistan and across the world.”
Pros and Cons to having Hydrocephalus and the myriad of conditions which come with it.
“The Pros are that even with all I’ve been through I still have a sense of humour, patience with myself and others and a steely determination to fight for the rights of others, especially when they
However, some of the cons which nobody discusses are that along the way I have acquired memory loss, high functioning Autism, many physical scars, partial sight loss, Nystagmus, Diplopia. My ʽnewest superpower’ is seizures. These began in 2020 a few weeks before lock down, they arrived from nowhere and have become part of me, scary to begin with and now just part of who I am.
“Growing up with this special set of differences was tricky, others weren’t always kind, the challenge is to surround yourself with those who love you and only want the best for you and you will grow into who you are destined to be. However, for me it is still about going at my own pace, and not judging yourself against others. I see my difficulties as being my superpower. Having Hydrocephalus, as well as Nystagmus, and Diplopia, memory issues and Autism, can be difficult; and there is no rule book on life. My difficulties make me who I am, but they don’t define me.”
James is keen to with work with Shine especially around more awareness with employers about NonVisible Disabilities, as well as awareness and ways to accommodate those with Hydrocephalus, as it doesn’t come as a sole condition and often the disabled community can feel dislocated and shut out from life.
If you would like to contact James about his work, his writing or involvement in Shine please email him at james.joseph98@hotmail.com
“
… My difficulties make me who I am, but they don’t define me…”
week 2023 was our most successful ever!
During the week, we launched new resources (see pg 3 for details), reminded you about hydrocephalus advice and information that is available via our staff and on our website, and ran loads of online learning and information sessions, and held virtual social sessions for members to connect and engage with one another.
We also delivered presentations to Royal College Paediatrics Child Health Wales’ St David’s Day conference, Cardiff and the British Paediatric Neurosurgery Group annual meeting in Birmingham, and put a focus on the importance of measuring head circumference in new babies in partnership with Harry’s Hat – all fantastic opportunities for us to raise awareness and let professionals know what Shine
71NEWMEMBERS
with Hydrocephalus, Spina Bifida and Hydrocephalus or Normal Pressure Hydrocephalus signed up
392 GP PACKS SENT OUT 84
does, and how our work can complement the statutory services they offer.
The best bit – having so many Shine members get involved. We couldn’t believe the number of stories and pictures that came in for #livingwithhydrocephalus and our fundraising campaign #hatsonforhydrocephalus. It was wonderful! With huge thanks once again to Codman for sponsoring and supporting us throughout the week.
You can find information and resources for Hydrocephalus here
https://www.shinecharity.org.uk/ hydrocephalus/hydrocephalus
49 NEW professional members Requests for printed information
120 members took part in online events
500 information downloads from our website
The Hospital Saturday Fund has donated regularly to Shine since 2001. Founded in 1873, it was created to help improve hospitals at a time when lack of nutrition, over-crowding, poverty and ill-health were common.
The Fund was built from those in employment paying a regular weekly amount. Pay day was a Saturday and it’s from this that the Hospital Saturday Fund takes its name. Now funded by a trading company, all profits are directed to The Hospital Saturday Fund, which gives grants to charities like Shine.
The Hospital Saturday Fund has an interest in health and medical charities, and over the last 20 years has supported Shine with projects in Wales, Little Stars,
our COVID-19 appeal and Health work.
The Fund is currently supporting Shine’s Health team with a grant towards their work, and says, “We are proud to have been able to support Shine over many years, and most recently with their specialist advice and support health services to improve the quality of life for people with Spina Bifida and Hydrocephalus. It brings the Trustees of the Hospital Saturday Fund immense satisfaction knowing our grant makes this possible.”
You can find out more about The Hospital Saturday Fund at www.hospitalsaturdayfund.org, on Twitter (@HSFCharity), Instagram (hsfcharity) and Facebook (The Hospital Saturday Fund).
story...
Three weeks after Logan was born in 2009, a strawberry mark appeared on the base of his spine. Despite being referred to a paediatrician, Logan’s spine wasn’t scanned.
When he started to walk, his left foot turned in and when he was 3.5 years old, he started wetting himself even though he’d been previously potty trained. At age 5, Logan was diagnosed with a tethered spinal cord with a lipoma and had surgery the year after. Logan is now doubly incontinent and has had numerous operations on his foot.
The family contacted a solicitor through the Shine's Legal Service in 2020 to see if their worries around the failure to scan Logan’s spine in 2009 were valid.
Logan’s claim is still being investigated but four experts in neurosurgery, orthopaedics, and paediatrics are all agreed that Logan should have been scanned.
Had he been diagnosed in 2009, he would have been closely observed and surgery would have taken place much sooner avoiding the incontinence and his foot problems.
Even though Logan’s case is ongoing, the family already have a better understanding of what happened. It is a relief for them to know that they weren’t being difficult when they kept going back to the doctors – they were right to be worried.
Even though no one can turn back time, the aim now is to make Logan's future more comfortable for him and he now has a team fighting for him to get the treatment and care he will need for the rest of his life.
Shine’s Legal Service is delivered in partnership with
If you would like to find out more about our Shine Legal Service scan this QR code to find your local expert www.shinecharity.org.uk/legal-service/shine-legal-service
During 2022-2023 our Shine volunteers have clocked up over 2,000 volunteering hours through a variety of volunteers roles across Shine and its 3 regions. These are through a mixture of regular and adhoc volunteering roles and include;
• Trusts & Foundations team admin and researcher –this was a specific piece of work to help the team
• Fundraisers and supporters who take on various challenges and can include anything from marathons and sky dives to cakes bakes and quizzes.
• Social media support group volunteers including our Shine 40plus FB group
• Peer support through our Whatsapp and face to face groups for parents.
• Our Shine shop volunteers in Swansea
• Focus group volunteers who help to review and
develop Shine information and resources, sharing their expertise and knowledge with other Shine members.
• Ambassadors: Being the friendly face of Shine in their local community. Representing Shine at community events and talks, organising fundraising events in aid of the Shine, distributing collection tins in their local community, promoting Shine via social media
• Trustees - who oversee and support the running of the charity
• Event Volunteers - who can have a variety of roles, depending on skills and interests
WE would like to say a huge THANK YOU- and if you want to get involved look out for roles and opportunities to get involved by visiting our Volunteers page – or by contacting firstcontact@shinecharity.org.uk
We wish our trekkers good luck on the Yorkshire One and Three Peaks challenges on July 8th. Why not join them in the beautiful Yorkshire Dales National Park?
It’s not too late to sign up, you can choose all 3 peaks or just 1!
#TeamShine are calling all Superheroes to run, walk, push, pedal, hand cycle, swim or row in these fantastic, all-inclusive family events!
Superhero Tri and At Home Superheroes are part of the Superhero Series powered by Marvel – the UK’s one and only disability sports series – and Shine is delighted to have a limited number of places available!
For these SUPER-FUN sporting missions, people with disabilities – AKA Superheroes – call the shots. There are no cut-off times and all kinds of ‘gadgets and gismos’ are welcome on the course, from floats and boats to powerchairs, adaptive bikes, trikes and more.
Plus!
Superheroes can unite with their ‘Sidekick’ family and friends to do as much or a little as they wish, with as much or as little support as they need!
On Friday 16th June, join us and ‘Go Yellow for Shine’!
Take part at home, school or at workanyone can get involved. All you need to do is: Go Yellow on Friday 16th June - wear your favourite yellow item or plan a yellow themed activity
To find out more visit www.shinecharity.org.uk/goyellow
Superhero Tri, Dorney Lakes, Windsor
Saturday 20 August
http://www.shinecharity.org.uk/SuperheroTri
If you can’t make it to Windsor, take on the At Home Superheroes challenge. This month-long challenge is super flexible, you can choose your own distance and you don’t even have to leave your neighbourhood!
http://www.shinecharity.org.uk/AtHomeSuperheroes
sponsored walk
challenges
on for Hydrocephalus
A massive thank you and congratulations to our 2023 London Marathon runners: (left to right) Joe, (with his nephew, Little Stars member Callum and his dad), Dave, Chris, John and Shay for their incredible efforts. These amazing people raised almost £20k to support Shine members!
AND LASTLY!
Completed the Abbey to Castle Trek
Over 1,000 Shine members are using Shine Health Direct and are reaping the benefits of an exclusive service that offers discreet and efficient delivery of urology and stoma products, as well as your prescription medications.
We caught up with Lesley, one of Shine Health Direct’s Personal Advisors, to hear about her experience of working in the service and ask her advice on how you can make the most of the service.
“I really enjoy the day-to-day contact with our members working at Shine Health Direct. Each month, I call or email members to check their stock and place their next order. As well as taking their orders, I get to hear about what they are up to, things that are happening in their lives, and that gives me a great feeling. Knowing that what we do at Shine Health Direct makes a real difference to our members’ lives is a great feeling.”
“I also love working with our nursing team and pharmacists to help members when they need a little more support than usual.”
“To make sure you are getting a call if you want one, or that your parcel is being delivered to the right place, make sure you tell your Personal Advisor about your communication preferences and what you would like us to do with your parcel if you are out – either on your
Shine Health Direct benefits include:
• Combined appliance and medication deliveries, or appliance only service available if required
• Your own dedicated customer service advisor from Shine Health Direct
• One call, one order – we call or e-mail you
• Complete peace of mind – no more worrying about running out of stock
call or you can email us. The service is very flexible, and this way, we can make sure we are following your wishes.”
“If you have asked us to only contact you by email, then please reply to our messages promptly – this way we can make sure that your order is processed in plenty of time for your preferred delivery date.”
Why are some of my usual supplies sometimes not available?
“Many product manufacturers are facing supply issues at the moment due to the global issues that are widely understood - sourcing raw materials, shipping from abroad and the war in Ukraine to name just a few. Because of our independence, whenever a SHD member requires a product that is unavailable we will contact them to offer the most suitable alternative(s) from another manufacturer. I know this is not ideal but we always do our best to make sure our members have the products they need when they need them.”
If you have a query with your delivery, who should you call?
“Please contact us on 0800 023 8857 and we can answer any query promptly.”
• Range of complimentary items
• Access to support from SHD's nursing and prescribing teams who can assess your needs and offer advice on managing
It couldn’t be easier to join Shine Health Direct: just call 0800 470 4577 and we will do the rest