Winter 2020 Issue 27
Ageing With Spina Bifida The UK’s biggest ever survey
Responding to COVID-19 How we’re combatting the crisis
Normal Pressure Hydrocephalus When Hydro strikes later in life
Our NEW Legal Service Here to help if things go wrong…
Plus lots more exciting Shine news inside!
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Winter 2020
An update from Kate It is difficult to know where to start with everything that has happened since the Together Spring 2020 edition. Covid-19 has challenged us all in different ways but none more so than you, our members, and your families. I have been humbled by many stories of the awful effects the changes to health, care and education services, access to food and medicines and increased isolation and loneliness have brought for some of you. Despite this, your resilience, determination, and support for each other across our spina bifida and hydrocephalus community continues to shine. This Winter edition 2020 showcases the new ways in which we have been working in response to an increasing number of requests for support and information over the past 8 months. It highlights the ways in which so many members, their families and friends have supported our work - from getting involved in Spina Bifida Awareness Week, sharing videos for our Shine Voices project, spreading the word about our Radio 4 appeal, contributing to our new programme of on-line Facebook Live sessions, responding to our national surveys and sharing your personal experiences to help and encourage others. We are also pleased to be introducing you to our new legal services for members. Details of the service and how to access it can be found here on page 13. We are, as ever, so grateful to our fundraisers and supporters. Thank you to everyone who has raised, and will be raising, funds for us. COVID-19 has had a significant effect on our charity fundraising, and it is hard to know what the coming months will bring. We need your support now more than ever so that we can be here for you long into the future. With my best wishes for the festive season and a happy 2021. Kate Steele Chief Executive
Improving antenatal experiences We have previously told you about the steps we would be taking following your contributions to our antenatal survey. One of the things we said we would do was to ‘work to improve the experience when parents have unexpected findings on their ultrasound, with consensus on a professional’s conduct and language used during scans’. We are pleased to announce that Dr Judith Johnson of the University of Leeds has led on a project, with partners from the NHS, Public Health England and charities, including Shine, to formulate the ‘UK consensus guidelines for the delivery of unexpected news in obstetric ultrasound: The ASCKS Framework’. This was published in May 2020, and we believe it will make a huge improvement to the experiences of parents-to-be in the future when there are unexpected findings on their scan. Shine will now work to ensure the guidelines are used in all antenatal settings.
Winter 2020
The year in review
See what we’ve been up to, and what we have achieved in our latest annual report – available online now. The 2019-20 annual report offers a comprehensive look at Shine’s finances and activities in the last financial year, and captures the progress we’re making against the five key objectives set out in our corporate plan: •
Improving outcomes for babies and children through early intervention and support
• Improved lifestyle and choices
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Access to better care and services for all
• Preventing spina bifida
To read the full report, click here!
• Quality information and support
Shine Voices Launches With thanks to lottery funding, we’re delighted to announce the launch of Shine Voices, a unique opportunity for you to tell the world whatever you’d like them to know about living life with spina bifida and/or hydrocephalus.
Whether you’re a parent or carer, young person, adult, or a member of our pioneering 40+ community, there’s a story for you and if not – then why not be the first to tell your own? You might want to tell us about your life, reflect on your youth, celebrate an achievement, or simply share a useful tip you’ve picked up along the way – whatever you have to say, we’d love to hear it. These true life stories, told by you, for you, will bring together the communities, offering inspiration and reassurance to those with similar life experience. You can view them online, as well as instructions on how to create and share your own, here
Your Child and HYDROCEPHALUS Get your hands on the book everyone is talking about.
Written by our expert health team, Your Child and Hydrocephalus contains over 80 pages of information covering every aspect of your child’s development from birth to 11 years old. Download yours today!
To download or request a FREE printed copy visit: www.shinecharity.org.uk/yourchildandhydrocephalus
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Responding to COVID-19
Heidi Watson Director of Services
What a year this has been for all of us! As soon as it became apparent what impact this virus was likely to have, we dived into action because we wanted to make sure that we did everything possible to support you through this difficult time.
This is what we did… Information on the virus and how to cope with all the delays and changes From 6th March we published regular guidance on our website. Based on the latest data and government information, Shine’s guidance has offered you solutions to the problems you told us you were having such as: •
struggling to get food and essentials
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not being able to go to clinics or outpatient appointments
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problems with care
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being taken into hospital alone with nobody to make sure your condition was understood
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finding it difficult to work out whether your condition put you in a high-risk or shielding group or not
Adapting our services so that we could keep supporting you and reaching out to you to see if you needed our help Nearly all our staff had to work from home but we made sure that we were still there for you. We decided to proactively contact people we hadn’t heard from to see how you were doing and offer our help. If we didn’t have your current telephone or permission to call, we have been contacting you by post or email. We also posted essential guidance to 3,000 members who may not be able to access food if they couldn’t get online shopping slots or get to the shops themselves. We are going to keep proactively contacting you, but if you haven’t heard from us yet and you need help or advice please call us Monday to Friday 9-5pm on 01733 555988.
From 1st March to 30th September across England, Wales and Northern Ireland we have: • Supported 4,346 members with 7,858 enquiries. This means that 1,000 more people needed our help in 7 months than would normally need help in 12 months. We have helped with problems such as delayed health appointments, physiotherapy, occupational therapy, pressure ulcers, housing, financial/benefits, mental health/wellbeing, home-schooling and much more.
• Welcomed 423 new members
• Had 22,310 contacts with our members including nearly 4,000 proactive contacts to check on members we hadn’t heard from.
• Campaigned to make your voices heard with government on issues like food access, the unfair impact on disabled people of the emergency legislation, lack of PPE (Personal Protective Equipment), issues with care and additional benefits to meet the cost of lockdown.
• Sent 3 email updates relating to the virus to almost 7,000 members who consented to email. • Delivered over 35 Facebook Live sessions with more added every week. You can join us for the live sessions, learn new things and ask questions, or watch them later. They cover a range of topics including health, mental wellbeing, memory, pressure ulcers, physio, housing adaptations, continence, benefits, etc. For details of upcoming virtual events, or to catch up on ones you’ve missed, click here. Recordings of these have been viewed over 40,000 times so far.
• Set up 16 regional WhatsApp groups with 298 members, so parents in local areas can connect up. We also offered Zoom groups featuring sleep solutions, benefits advice, a dad’s group and coffee meetings. 370 parents saw our Hydrocephalus and Learning Webinar – get in touch if you want to see this.
• Delivered online social events like coffee and a chat, lockdown tea at 3, adult quizzes and bingo in Northern Ireland and Wales. • Kept you updated through our 11 Facebook Groups. • Kept in touch with 10 specialist clinics to share updates with staff/patients. • Launched Your Child and Hydrocephalus book, packed full of useful information.
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A few examples of how we helped… In England Tanith told us: “Early Intervention Worker Hayley put me in touch with Bronwen for a Zoom Physio Session. Bronwen put together a document for us of exercises she recommends we do with Noah while we wait to be seen by the NHS and I just can’t thank you guys enough for that! Noah is 8½ months old so I don’t want to lose a minute of time when it comes to early intervention and I just feel like Shine has ensured we can make the most of this intermediate period where we’re a bit stuck, waiting on appointments.” In Northern Ireland Lisa told us: “Shine’s Facebook Live sessions have been amazing. I’ve learned so much about my conditions: Spina Bifida and Hydrocephalus. Even though I’m 35 and have had the conditions all my life, I feel that I’m learning things about my condition that I didn’t know before and feel so much more confident in managing and explaining my conditions by myself. The sessions on mental health have been useful reminders to me about the importance of taking time to care for my wellbeing and to live my life well, even in the middle of a pandemic. Being able to interact with a range of Shine staff through these sessions has helped me to realise the breadth of knowledge and expertise the charity has and has helped me feel part of the bigger Shine community. Shine has always been part of my life, but it feels
Thank you for your support! Your vital donations to our emergency appeal through the COVID-19 pandemic mean that Shine are able to be there for our most vulnerable members at a time when they need us the most.
that since lockdown began they have really met the challenge of meeting the needs of their members, by changing the way they work and offering new services like the Facebook Live and physio sessions. It has been a real lifeline to me.” In Wales Through one of our proactive calls to a member aged over 50, we found that the local continence team had changed her pads to a type which rubbed and caused her skin problems. Our Support and Development Worker contacted the continence team and convinced them to revert back to the old ones and arrange an urgent delivery. Another of our members had lost her mobility car when her PIP was reassessed and there were severe holdups with challenging this decision due to coronavirus. This was a very distressing time for our member, but we supported her to ensure that Motability kept her in the system. We helped her to submit the mandatory reconsideration paperwork to challenge the decision. This resulted in her getting her mobility award back and we helped her choose the right car for her!
The situation is ongoing
Every £10 you donate will pay for a potentially life-saving phone call. Donate here
Or scan here
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Winter 2020
Survey update A big thank you to all the 516 parents who returned our Little Stars Surveys.
these up. Not surprisingly, post lockdown, more parents are interested in social outings for their families, although we do not envisage being able to facilitate this until 2021
We learned so much, including •
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The baseline survey reached many parents we had not previously engaged with, so your responses meant that we could follow up directly with families who wanted to know more about the project and how we could support them
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More parents who completed the second survey had been in touch with Shine in the last year. These parents were more confident in managing their child’s condition and they spoke more to other parents themselves or through Shinefacilitated events/groups, demonstrating the importance of these connections
Health and education are the top two topics parents would like further information on, and the need for support with education is likely to have increased as a result of lockdown, the impact of schools being closed, parents and children being worried about returning to school, and EHCPs not being issued or reviewed
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Because of time in lockdown more parents have told us they are interested in digital methods of talking to other parents. We are already setting
Age-specific advice was also requested by quite a number of parents. We are shortly due to launch our new Little Stars e-newsletters which should provide you with the information you have asked for
The information and insight you provided in your responses has enabled us to adapt our programme to better meet your needs during the current time.
Linda’s love of literature leads to bursary award Shine member, Linda Corbett, has loved writing for as long as she can remember. She used to write a regular column for ASBAH’s former ‘Link’ magazine, and regularly contributes to Shine Surrey newsletters, where she is treasurer. “One of the many reasons I love writing is that – possibly for the first time ever – I am participating with everyone else on a level playing field, and I don’t need a good pair of legs to type on a laptop”. It is Linda’s passion for words that led her to try her hand as a novelist. It’s a tough industry to be in, which no one knows more than Linda, who says: “7 years, 5 books, well over 100 rejections and still plugging away. I’ve thought about giving up many times as it is so tough when you get so many knock backs all the time”. As a member of the New Writers’ Scheme, run by the
Romantic Novelists’ Association (RNA), Linda has had the chance to submit manuscripts for critique and feedback from the RNA’s panel of authors to improve her skill. Her writing has also given her a platform to challenge attitudes about disability and stereotypes. “My first proper attempt at novel-writing included a character in a wheelchair. He just appeared in my imagination like that so it wasn’t a conscious decision, but on the other hand I was doing my bit for the cause and already had first-hand experience of what is, and what is not, appropriate terminology”. Linda’s determination, persistence and love for the written word is paying off. She has been awarded the Katie Fforde Bursary, which encourages fresh talent in writing of romance and novels through a bursary to attend the RNA’s annual conference (all virtual this year, of course) but Linda is hoping to have the chance to attend next year’s conference too. “The award has given me a real impetus to keep going this year!”
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People… places… memories and moments Hello all, I’m Brett, I’m 29 years of age and I have Spina Bifida Myelomeningocele. I use a wheelchair and at birth, had surgery on my back to close the cyst after being transferred from Leighton Hospital here in Crewe to Alder Hey Children’s Hospital in Liverpool.
their shows in Liverpool; or even something as simple as watching the horse racing with that wonderful community. That’s the thing, I’ve been very, very blessed that all of my hobbies have made me connect with people globally. It’s often said that having a disability makes you naturally limited. While that is true in some cases, you’re not limited by the things you love and the passions, interests and hobbies that can enrich your life. They’re yours. In my spare time, I find myself glued to the TV for the weekend watching Formula One and supporting my favourite Formula One driver, Daniel Ricciardo. It’s a sport that I love and hope to attend someday in person, intending to meet him.
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Growing up, …Spina Bifida, for me, my childhood isn’t something to be afraid was fairly of or to shy away from. It’s normal. It was not a part of me. It’s my ability without the odd bit of to spread a smile and bullying and ignorance from That’s the point of all of this, I the general public, that was part of positive words, to try and suppose. We live in a very uncertain having a disability (and still is) but make an impact… time right now, a time where nevertheless, childhood and life has everyone is in the same storm but been fairly normal for me. Since I was on different boats but in all of that – we can dream, we asked to do this, I was both relieved and honoured can embrace the things we love in the most innocent - I’m very much okay with expressing myself, talking about Spina Bifida through my own words, to the point and enthusiastic of ways.
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where I hate being unheard during awareness months.
I was going to tell you all about my story, but it felt right to talk about something far more important than that, especially in the current climate we are living in. In this current COVID world, we as people have lost our way just a little. We have forgotten the importance of finding joy and happiness in the things we love.
Spina Bifida, for me, isn’t something to be afraid of or to shy away from. It’s a part of me. It’s a part of all of us but it’s so, so much more. It’s my ability to spread a smile and positive words, to try and make an impact. Find your moment, make it yours. Brett Glover
Instead, I want to talk about something that is personal to me: people, places, memories and moments. Life isn’t about those moments of pain and surgery, although they’re as much a part of the Spina Bifida story as anything else may well be – they aren’t a defining moment in your life. Sure, there’s hard times for both parent and child/adult that works with Spina Bifida; but there’s joy, happiness and laughter too. Myself, for example, I have many a great moment to look back upon years from now; the times I’ve visited Manchester Arena to watch the wrestling or comedy shows with my friends and in meeting various celebrities over the years - from meeting Prince Harry, after being nominated for a Bravery Award, to spending a little time with The Script before one of
(above) Brett with The Script before a show in Liverpool
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Winter 2020
1000 Voices
A first in better understanding ageing and spina bifida
This Spring we launched our survey to capture our adult members’ experiences of their health with spina bifida, and how it has changed over the years. We asked all our members with spina bifida over the age of 25 many questions about their lives, their health and their healthcare services, as little is known about how spina bifida affects ageing. We also know from our members that their conditions are poorly understood by healthcare providers, and that many services are inadequate once paediatric care comes to an end. We had an amazing 1,082 responses, so thank you to all who added your voices. This makes the 1,000 Voices research one of the biggest sets of information on adults with spina bifida in the world. We’ve sifted through and pored over the results, and believe we understand more about your experiences, the changes that have been happening, and the struggles you’re having with healthcare.
So, what did you tell us? The summary of the report is available on the Shine website, here The full report (all 50 pages!) will be available very soon but here are some highlights…
Work 29% of working-age members said they were in paid work, which is considerably less than the general population (76%) and more than half of members said their work situation had changed over time. Pain, mental health and changes to the job itself were reasons commonly given, and 36-40 years old seemed to be when the changes were most likely to occur.
Living arrangements The most commonly reported arrangement was living with a partner (38%). Two thirds of 25-30 year olds lived with their parents, which went down to one third of 30-35 year olds. We looked at the impact of living alone on mental and physical health, and we found people living alone were
no more or less likely to tell us they had mental wellbeing issues or physical issues, such as pressure sores, than people living with others.
Mobility Around 17% of members told us they walk unaided. Many people told us their mobility had changed, mostly becoming less mobile, and around 35-40 was the time this seemed to start for many. Pain and tethered cord seemed to be important factors, and many of you told us these changes were very hard to come to terms with. Other members told us that wheelchair use had a very positive impact on their life. Balance had changed for many people who walk, again, around 35-40 years old. All groups of people who used sticks, crutches or manual wheelchairs told us they had upper-body problems, such as shoulder or neck pain, or reduced use of their hands. We were very interested to know more about osteoporosis; research in other countries suggests around a third of people with spina bifida may have it. It is usually associated with older people, especially women, but in our survey around 9% of people aged 25-30 said they had it. It is probably still underdiagnosed in the UK, and screening for osteoporosis might be needed in young adults and men with spina bifida, especially if they aren’t weight-bearing. Pain was a big problem for many members, with only a quarter reporting that they rarely experienced pain. People reporting pain most days went up from 40% of people in the 25-35 age group to 67% of people in their 60s. You said that your pain contributed to poor mental health, changes in employment and mobility.
Skin and tissues A third of members had had cellulitis or lymphoedema, starting between 21 and 35 for most people. But the good news is that nearly half of people with lymphoedema were accessing compression treatment, a highly effective treatment to reduce the size of the legs and improve tissue health.
Winter 2020 Over half our members had had at least one pressure sore. Many people with sores had been in hospital for treatment, sometimes for months, and a shocking 23% had developed pressure sores while in hospital for something else! Many people had spent time, sometimes months, in hospital for pressure sores.
Sleep apnoea Although 1 in 10 of our members had been diagnosed with obstructive sleep apnoea, many more said they had symptoms, such as falling asleep in the day for no reason and feeling tired all the time. OSA can cause heart failure and ‘brain fog’, but it is often easy to treat. If you think you might have sleep apnoea, ask your GP to refer you for sleep studies. Or visit here Although many women with spina bifida have early or precocious puberty, we found most of the women who had gone through the menopause did so only slightly earlier than the general population, at 49 years old. This extra exposure to oestrogen means our members should ensure they check their breasts regularly and attend their mammograms, but it could be good news for their bone health such as osteoporosis. We found that men over 50 reported prostate enlargement, less than is found in the general population. We would encourage men to have regular checks for benign enlargement, and prostate cancer once they reach 50.
Spina Bifida Awareness Week In October, we celebrated Spina Bifida Awareness Week, asking members ‘what would you tell your younger self?’. We received lots of great videos which are now on our website to watch anytime you want. Shine received national coverage thanks to a BBC Radio 4 appeal where mum Maria spoke candidly about her experience of when her daughter Delilah was diagnosed with spina bifida at her 20-week pregnancy scan. Our spina bifida awareness pack, which was sent to all our members with the condition, included a ‘letter for your GP’ to help GPs understand more about spina bifida, its health implications and the support you need. We also delivered lots of useful on-line learning sessions, including videos on ‘spina bifida and mobility’ for parents and schools. We saw even more taking part in ‘Back to Front’ events up and down the country, having lots of fun whilst raising money and awareness of spina bifida.
Mental wellbeing This was a great concern to many of you, and only a quarter of members said they had no concerns about their mental health. Over half had anxiety, depression or both, and 87% of members said it had got worse over time.
Your healthcare Unsurprisingly, very few members were under the care of multidisciplinary teams for their healthcare or having proactive checks for their health. Half are being cared for by a urologist, which is good news given the extra risk of bladder cancer in people with spina bifida. A quarter of you thought your spina bifida was poorly understood in hospitals, and around half of members said it was hard to get equipment they need and to stick to their bowel regime in hospital. The report contains so much more, on kidneys, bowel care and driving. This information will drive our campaign for better healthcare and better information on the condition for you, and your professionals.
Save the date! HYDROCEPHALUS AWARENESS WEEK 8th-14th February 2021
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Libby’s Studies! In May this year one of our young members with hydrocephalus, Libby Key, got in touch because she was conducting some research into the condition for her academic studies. Libby wanted some help recruiting participants for her project, so we shared the questionnaire she had made via social media. The survey had a great response so thank you to all the members who took part. When Libby later sent us the report that she had written based on the survey data, we thought it was so good that we asked her to share a bit about her work with Shine in Together Magazine.
This is what the brilliant budding researcher said… Why were you interested in doing hydrocephalus research? “I had to choose a topic to base my Extended Project Qualification (EPQ) on. I didn’t actually know a huge amount about hydrocephalus until I decided to pursue a project in this topic and because I knew that I had been affected by it to a certain degree, I was keen to find out more. This interest then acted as a funnel to me and opened up a wide range of research options, and then, from this, came my idea of wanting to find out about other people’s experiences.” How many survey responses did you get and what did you find out? “The research process of this project taught me a huge amount of very valuable skills and information. In total, I received 120 survey responses, and although it was a huge privilege to hear snippets about other people’s condition, I also learnt that every single case is different and everyone is always going to be presented with different challenges. I was interested to learn that sometimes people are born with hydrocephalus but not diagnosed till later
and they may have certain difficulties for their whole life but not know the reasons why until they are diagnosed. Receiving this amount of responses was incredible and very overwhelming for me at first because I didn’t expect the outcome to be so positive, and I am incredibly proud of how successful it was.” Did you enjoy the research and would you like to do more in future as part of your studies or a job? “The combination of reading detailed medical reports (secondary research) and carefully reading other people’s responses from my questionnaire (primary research) has provided me with endless valuable knowledge of the condition and has also boosted my confidence from a personal point of view, in terms of seeing that there are people out there who share difficulties in common with me. In terms of how this will affect me in future, because of what I experienced as an infant, I decided that after school, I wanted to pursue my knowledge in childhood illness/learning difficulties, so in September, I am going to be going to college to undergo a 2-year course that has the title ‘Level 3 Early Years and Childcare”.
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Normal Pressure Hydrocephalus (NPH) SYMPTOMS INCLUDE… • • • • •
Difficulty walking, and a slow, shuffling gait Falls, especially backwards Memory/cognitive issues Apathy/depression Urinary incontinence
Hydrocephalus is well known as a neurological condition in people of all ages, yet adults can develop a different condition called Normal Pressure Hydrocephalus, or NPH. This develops most often in the middle or later years, with symptoms coming on gradually. It can occur after a stroke or bleeding around the brain, head injury, tumours or meningitis. However, for many people, the cause is never discovered. NPH begins when the fluid in the head does not drain away or absorbed. The ventricles enlarge, but the pressure does not rise particularly high. There are similarities to other conditions, such as Alzheimer’s (the same chemicals build up, leading to similar symptoms) or vascular dementia. However, it can take a long time to get a correct diagnosis, owing to these differential diagnoses, and lack of awareness of NPH by some clinicians. When NPH is suspected, an MRI is done. If large ventricles are found, a lumbar puncture may be done, drawing off fluid from the spine, with a test of walking speed and style before and after. Tests of cognitive ability, and infusion studies are done in some centres. If there is an improvement after the lumbar puncture, this indicates that operating to insert a shunt might help reduce symptoms and restore good quality of life. As shunting is the only treatment that might help NPH, some centres operate without tests, based on MRI findings. Programmable shunts can lower the pressure gradually and prevent complications, like subdural haematoma. In older people, shunt infection/ blockage is rare. NPH is progressive, and early diagnosis and treatment give the best chance of regaining walking ability and cognition. However, since many people wait months or years for a diagnosis, some people may be left with challenges. Because many people with NPH are older, other neurological conditions
may be developing at the same time as NPH. Although shunting may help the symptoms initially, they then worsen again as the other conditions progress. Some people with programmable shunts can see improvements, especially to their walking, if the setting is altered, so ask your neurosurgical team about this if walking gets harder again (this tends to be the first sign). Physiotherapy can be helpful if you’ve lost the confidence to walk, or you still have balance problems. One member, Isabelle, told Together that her recovery after a shunt was gradual. “…The mental fatigue I felt frustrated me. If I overdid it one day, I’d pay for it the next. I was left with awful headaches every day, lost some movement in my face and feeling in my hands. I also had a pain in my abdomen, which turned out to be scarring from the shunt. But nobody warned me. The hospital staff were good, but because they do shunt surgery all the time, they forget that for us, it’s all new and scary, and hard to adjust…” Sadly, some people with NPH will not be able to have a shunt as their health is not good enough for the operation itself, and others will choose not to have surgery. Preparing mentally and physically for the changes ahead can be a challenge for loved ones. Social Services can assess for care needs to put in support, and also do a Carers’ Assessment, to make sure you get the support you need to carry on. Local Carers’ Groups can put you in touch with people in a similar situation. Your local continence service can support with urinary incontinence, and an OT can make sure you have the equipment and adaptations you need.
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Stronger together! Shine works in partnership with a range of different organisations and recognises that we are all stronger if we work together. We hugely value the local associations that still exist. Here are some updates from those we regularly work with…
Shine Surrey was set up in 1965 and is therefore one of the oldest local associations. They started life as NASBAH (New Association for Spina Bifida and Hydrocephalus) then ASBAH-surrey, and since 2012, Shine Surrey. Their aim has always been to support individuals and families affected by spina bifida and hydrocephalus in their area and they currently cover the whole of Surrey, plus six neighbouring London boroughs. Until lockdown temporarily halted events, they organised a variety of activities throughout the year, including visits to the theatre, boat trips, summer picnics, coffee mornings, and trips to the cinema. You can still join in coffee mornings which are being held via Zoom. Shine Surrey also has a welfare grant programme and, since 2002, they have given grants to local people totalling over £15,000. They also partfund the role of our local Shine Support & Development Worker, for which we are very grateful. They can be contacted via their Facebook page or the Shine Surrey website here North & West Yorkshire Association for Spina Bifida & Hydrocephalus is a registered charity, which has existed since 1967. By supporting, informing, and campaigning, they are continuing to help promote individual choice, control, and quality of life for all the people who use their services. They wanted us to make you aware of their Peer Support and Befriending service. If you live in their area and want someone to talk to, check in on how you are or, you want to meet someone with the same diagnosis and their families (virtually) you can get in touch with them on 07966 161 299 or katyravenasbah@gmail.com or you can find out more here Sheffield Association for Spina Bifida and Hydrocephalus has existed since 1964 to support people who live in the area and who have the
conditions. They provide information and resources through their newsletter. When coronavirus allows they will continue to offer social events to combat loneliness and encourage a sense of community. They also have a pioneering befriending project and offer financial aid via small grants. To visit their website click here We also work closely with Family Fund which is the UK’s largest charity providing grants for families raising disabled or seriously ill children and young people. Last year, they provided 89,101 grants or services worth over £33 million to families across the UK. They provide items and services to all low-income families in the UK raising disabled or seriously ill children, to improve their quality of life, realise their rights, and remove some of the barriers they face. Partnership Development Manager at the Family Fund, Rachel Perrin said: It’s so valuable to have worked with Shine over the years to reach families raising children with Spina Bifida and Hydrocephalus that need our help. Shine workers really understand their families’ needs and signpost families to us for help with information and grant support. We can help with items such as family breaks, tablets and laptops, white goods, sensory equipment and much more”. If you or your family are interested in applying for support from Family Fund you can now apply on-line here – or ask your Shine worker to help! Family Fund have a series of webinars on their events page to explain how to apply or you can contact Shine and we will help you to apply. Or visit their website here
Shine launches new clinical negligence legal service
Meet JACK*
Jack* was born with a tethered spinal cord, and late diagnosis left him with a lifelong injury. Our help with Jack’s claim will ensure he has a future that includes everything he needs.
As a Shine member you constantly place your health, and sometimes your life, in the hands of clinicians. Most people will not experience any difficulties, but sometimes things can unexpectedly go wrong. In some cases, this could have been avoided. The decision to bring a claim for negligence can be a difficult one – it is not a quick nor easy process and it can mean having to recall painful experiences about the impact the mistake has had on you and your family. Before considering a clinical negligence claim it is important that you take advice from specialist, reputable solicitors who are experts in clinical negligence cases.
Shine’s legal service
Meet GARETH*
Gareth* was born with spina bifida, a diagnosis missed by doctors. We supported his family through the clinical negligence claim process to ensure the best future for Gareth.
To help you, Shine has partnered with nationally recognised solicitors who are regulated by the Solicitors Regulation Authority. They understand the complexities and complications that spina bifida, hydrocephalus and associated conditions bring. They will ensure you get the right legal advice and support as soon as possible. Kate Steele, Shine CEO, says, “We are delighted to have a strong team of solicitors signed up to deliver the Shine Legal Service to provide expert clinical negligence advice and support for our members”. The solicitors delivering Shine’s Legal Service are members of the Law Society Clinical Negligence Panel, Association of Personal Injury Lawyers or the patient safety charity, Action against Medical Accidents (AvMA).
Meet LEO
Leo, is eight years old and has spina bifida. With legal support Leo has secured funds to ensure that he has access to the best possible care, therapy and equipment now and for the rest of his life.
Get in touch
To find out more information about clinical negligence and the legal options available to you through Shine’s Legal Service, and to read Jack, Gareth and Leo’s stories in full visit
www.shinecharity.org.uk/legal
*Name and images have been changed on the request of the individuals.
14
Winter 2020
Fabulous fundraisers!
Shine’s fabulous fundraisers haven’t let the pandemic stop them doing amazing things to raise money for the charity over the past few months. The services Shine offers are almost entirely funded by the generosity of the general public. Without our incredible supporters we would not be able to continue the charity’s work. THANK YOU to each and every one of you who has taken on a fundraising challenge or dug deep to donate to Shine. Every pound continues to make a difference. Want to get involved? Whether you know what you want to do or need some inspiration we would love to hear from you. Get involved here to find out more.
Matt Tiner ran 5k every day in May and raised over £3,000!
Sarah Jacobs and Wendy Toner took part in the Canny North Run and raised £525!
Katie and her dad Jason took part in the Virtual Great North Run challenge!
At home Superheroes All of our fundraisers are superheroes, and none more so than the three Shine members and their families took part in the national At Home Superheroes challenge and raised an incredible £6,535 between them! A huge thank you and congratulations to Henry Chivers, Gwyn Dafydd Hughes, Oliver Pearce and their families for taking part in the virtual challenge.
Gwyn
Henry
Oliver
Winter 2020
Virtual London Marathon They may not have been able to take to the streets of London this year, but Team Shine took on the challenge of running 26.2 miles in their local area, when the London Marathon turned virtual. Well done Team Shine, who raised £2,500 between them! Jacqueline Braid, Craig Hellier, Greg Hammond, Kevin O'Neill, Matt Taylour, Amy Scamwell-Webb and Justine Hill.
Other Shine superstars!
Shaakira is donating 10% of profits from her cake business to Shine!
Tanith Lifton and family and friends climbed Mount Snowdon and raised £800!
Maria for running her 10th Marathon in Malta on 1st March!
Charlie, Nicky and Clare aka The Imperial Senate Podcast held a five-hour livestream, raising £1,534
Katie Crouch ran her first half marathon in March!
Val Conway walked 77,000 steps for her 77th birthday and raised over £500
15
Get expert advice online Shine events go digital!
Whether it’s expert advice on the topics you need or just a place to socialise, Shine are here to support you digitally!
180mm w x 210mm h
Our online sessions have been designed to give you all the information and support you need to keep physically and mentally well throughout this pandemic. Join one of our regular events for the chance to interact live and ask questions on the topic or catch up later by watching ‘on demand’. We also offer online social events and individual Zoom sessions on specific topics such as benefits or sleep support.
For details of all upcoming sessions, or to catch up on one you missed, visit:
shinecharity.org.uk/events Here to help...
Please do send any comments or enquiries to us: P: Together Shine, 42 Park Road, Peterborough PE1 2UQ
01733 555988
www.shinecharity.org.uk
©Shine Registered Charity No 249338 Company Number: 877990 Please let us know if any of your contact details have changed 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.