Where, oh where, has this year gone? It hardly seems five minutes since we sent out the Spring/Summer edition of Together, and now here we are again coming to the end of another year, with Christmas and the New Year just around the corner.
We know that things haven’t been easy for so many people. Coming out of the pandemic, health and care services stretched to the limits as a result, watching the war develop in Ukraine and all the horrors that brings for people living there, and those who have had to flee, and then straight into the unfolding cost of living crisis.
I am sure you have found the help, information and support you need from our wonderful teams, who have worked so hard again this year to respond to all the calls and emails and social media messages, put together essential information for you, organise events and raise the ever-important income we need to keep the charity going. Please don’t forget – we are here whenever you need us, and if we can’t help, we will find someone who can!
Thank you to everyone who has contributed to the articles and i Together for everyone! With
Picking up where ‘Engage, Enable, Empower’ left off, ‘The Next Steps’ sets out our strategy for the next five years, including specific areas of work we will focus on, and what we will be doing to deliver on those aims and obje
At the heart of our new corporate plan are seven strategic goals.
1 Enabling babies and children with Spina Bifida and/or Hydrocephalus to achieve their full potential
2 Empowering young people with Spina Bifida and/or Hydrocephalus through knowledge, confidence and skills to manage their conditions and thrive
3 Adults with Spina Bifida and/or Hydrocephalus have the choices and opportunities to live healthy and independent lives
health and care services through engagement, partnerships, research and campaigning.
For more on our goals and objectives over the next five years, download your copy of the corporate plan at: www.shinecharity.org.uk/corporateplan
We shared the news of the sale of our Head Office in the last edition of Together. The Board of Trustees has agreed to a programme of investment to use the proceeds over the next five years to deliver our Corporate Plan priorities, strengthen and expand our services and health teams and increase capacity for fundraising to grow our income for the future.
We have also invested in technology and data management systems, which will improve efficiency, save time, and enable us to offer support to more individuals and families.
Earlier this year, we lost one of our dear friends and a long-standing Trustee, Patricia Adley. Patricia was a retired Solicitor who was appointed to the board in November 2015. She had an excellent working knowledge and experience of the law, equalities and management practices. She worked firstly in private practice and then as a senior local authority manager for over 20 years, during which time she held the positions of Head of Legal Services, Strategic Director, and Head of Paid Service.
Patricia was always passionate about the health care agenda and service provision. She had a first-hand understanding of the day-to-day issues faced by Shine members. As well as being an active and dedicated Trustee, Patricia was a long-time supporter of Shine and a determined advocate of the importance of health and well-being and improved services. She was truly a valued friend to all who knew her. She is deeply missed by all of us.
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We’re still buzzing with excitement following October’s Spina Bifida Awareness Week 2022, which saw record numbers of you taking part by attending events, sharing stories and downloading our handy ‘Get Ahead’ passport resources.
We’re already gearing up for 2023:
6th - 12th March Hydrocephalus Awareness Week
Friday 16th June 2023 Go Yellow for Shine
16th October – 22nd October 2023
Spina Bifida Awareness Week
Wednesday 25th October World Spina Bifida and Hydrocephalus Day Make sure to write these dates in your diary and keep an eye on your inbox so you don’t miss out on more information about these events over the coming weeks and months.
Shine’s Annual Report is now available and marks a momentous year for the charity which saw us succeed in our 20-year fight for the fortification of flour with folic acid whilst dealing with over 20,000 enquiries from members on topics such as health, finances, education, and employment.
The report documents our work over the past twelve months, highlighting our accomplishments and successes and sets out the economic challenges we’ve risen to and overcome to ensure services were not disrupted during a difficult twelve months.
We’re incredibly proud of our achievements this past year and encourage you all to read the report as a reminder of the support and services that are available all year round thanks to the efforts of our staff and supporters who work tirelessly so that we can continue to provide advice and guidance to the Spina Bifida and Hydrocephalus communities across England, Wales and Northern Ireland. Download your copy www.shinecharity.org.uk/annualreport
In our Spring edition we included information about the Whizzybug.
To introduce the story, we mistakenly used the headline ‘Try before you buy’ which does not accurately reflect the scheme which gives free access to powered wheelchairs for young disabled children across the UK. Through the loan scheme, children can access a Wizzybug for as long as it’s suitable (up to the age of 5), with a Designability Occupational Therapist keeping in close contact throughout to give personalised advice. At the end of the scheme, the Whizzybug is returned and refurbished to be used by another child. For more information about the scheme, and to see if your child is eligible, visit www.designability.org.uk/meet-wizzybug
Three years ago, a grant from the National Lottery Community Fund (NLCF) allowed us to set up and run a “test and learn” early intervention programme in England focused on helping families with babies and children from 0 to 12 years affected by spina bifida and hydrocephalus.
Parents have told us Shine has successfully created a community where they can connect with others, feel empowered through knowledge, and are confident in the support networks surrounding them.
We also know now that a targeted, pro-active service is vital in helping parents to navigate the complex jungle of services which their children need, armed with the information and support to be able to prioritise and fight for the rights of their children to have the best chance in life.
Thanks to the success of the project, and the growing need we see for our services post-Covid, the National Lottery Community Fund in England has approved another three years of funding to help us:
1 Maintain our support for our members up to the age of 12 AND
2 Go a step further and offer specialist support right up to the age of 18, supporting young people as they make the transition to secondary school, further education and increasing independence
The phrase ‘Cost of Living Crisis’ is being used more and more, provoking feelings of anxiety and stress for many, not least disabled people and their parent/carers as many are affected by the dramatic increases in the cost of living.
Help has already been announced with the Government’s Help for Households scheme launching in May 2022. Some Shine members should have received payments from this support, which include:
• £400 off energy bills started in October – This is discounted from your energy bill monthly at a rate of £66 a month. If you have a prepaid meter, you should already be receiving a discount voucher on the first week of the month.
• £650 one-off Payment for people on meanstested benefits – you should have received a first payment in July, and a second in early November
• £150 - Disability Cost of Living Payment – if you receive DLA (Disability Living Allowance), PIP (Personal Independence Payment) or Attendance Allowance should have received this additional £150 payment in early October.
• Pensioner Cost of Living – if you are a pensioner, you should have received an extra £300 in November with your Winter Fuel Payment.
Local Authorities’ Household Support Funds have been extended to March 2023 to help pay for things such as energy & water bills, food and winter essentials. Check your Local Authority website to see their criteria for eligibility and apply for support. You don’t have to be receiving benefits to apply.
Visit https://www.gov.uk/find-local-council to find your Local Authority.
Your energy company can support for customers who are struggling with debt and payments. Visit their website for details. The most important thing is to communicate with your provider if you are in difficulty as soon as possible.
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Shine’s regular ‘Staying Well’ newsletters include important information about the financial aid available to members and we’re also sharing details of grants and support on our social media pages. You can also join zoom events focused on finances, eating well and mental wellbeing or contact us directly at first.contact@shinecharity.org.uk or 01733 555988. For details of upcoming events, turn to page 14.
24th June 2022 was a pinch-me-I’m-dreaming moment with the publication of my debut novel, Love You From A-Z. But did you know that Shine (formerly ASBAH) was responsible for kickstarting my literary aspirations?
It all began back in 2003 when I wrote an article for ASBAH’s Link magazine. The editor liked it, and my column became a regular feature of the magazine. I wrote about everyday things such as the difficulties of being disabled in a busy workplace, my protracted battle with the local hospital trust over their unhelpful shoe policy, or why life is better with guinea pigs.
By the time the magazine folded in 2010, I’d well and truly got the writing bug, and started up a blog instead (www.guineapighotel.wordpress.com) It was around this time that I also attempted my first novel. It was fun and I got a real sense of satisfaction after finishing it. In blissful ignorance of how the publishing world worked, I fired off a few submissions to literary agents, and thus began many years of writing and collecting rejections.
with renewed enthusiasm, I started yet another novel.
I took another step closer when I joined the Romantic Novelists’ Association in 2018. Having access to professional feedback is really important and gave me the knowledge to take my writing to the next level. It’s also lovely to have friends cheering you on as writing is a very solitary hobby, and everyone in Shine Surrey has been very encouraging.
By 2020 I had written another book (attempt number five!) and this time the feedback from submissions was more positive, but still no offers. In the same year I was also awarded the Katie Fforde bursary – a kind of literary perseverance award. And then, just as my thoughts were turning to something new for 2021, I got the email. The one that said yes! But… they wanted a different story with a disabled heroine. Could I pull that off? I thought back to all the magazine articles I’d written highlighting the humorous side of life with a complex disability, and decided that yes, I could do this.
This is where it’s useful to decide why you are writing. Is it simply because you enjoy creating stories? Or do you plan to self-publish them at some point? Or (and this is the tough one) are you trying to attract an industry editor and get a publishing deal? I aspired to option three, but by the middle of 2015 I was still getting absolutely nowhere, and enthusiasm had stalled.
Then in November 2015, Shine launched a short story competition: A Winter’s Tale in under one thousand words. It felt like a message from the universe telling me to get writing again! Two months later, I was thrilled to hear that I’d won first prize in the adult section, and
I gave my heroine, Jenna, mobility problems, but she gets on with life as best she can and she has a sense of humour. In too many novels, disabled characters are included for sympathy purposes, or are written from an able-bodied person’s point of view. Disabled people are entitled to see themselves represented positively in fiction, and there is now a move within the publishing industry for more “own voices” stories.
It’s been a long journey – ten years, six novels and 221 rejections – but I’m delighted with the positive responses to my book. If nothing else, it proves that writing is one occupation where disability doesn’t matter, and you can do it from the comfort of your own sofa.
“… It’s been a long journey – ten years, six novels and 221 rejections – but I’m delighted with the positive responses to my book…”
…“I was told from an early age ‘you cannot (or will not) do certain things’, but today I can look back, having ticked off a whole list of things, -within six months I had passed my driving test on the first attempt…”
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We recently caught up with Shine member Francis who was kind enough to share with us his story of life growing up with Spina Bifida and Hydrocephalus, his passion for horse riding, and his involvement with the South Buckinghamshire Riding for the Disabled Association (RDA).
It wasn’t the easiest of starts in life for Francis, who grew up in the Care system from birth, until he was 16 years old.
the age of 21, Francis has excelled and has a wall full of awards to show for it.
He developed a keen sense of purpose and drive and with his love of horses and riding, found his niche in the fields of the South Bucks RDA. In more than 12 years of competing, Francis was placed in the top six Dressage competitors in his class at both regional and national level.
Francis recently celebrated more than 40 years with the South Bucks RDA and now helps them by fundraising and supporting the group, however he can.
“After 12 years and multiple operations, I stopped competing in Dressage. But through South Bucks, I was able to join the RDA National Team where every year for over 10yrs, I’ve been responsible for playing the rider’s competition music at the National Dressage Championships at Hartpury College in Gloucester.
“Each test is about five minutes long, and I had to be aware of what the riders, their teams & the officials were doing, starting & stopping the music at the appropriate time”
He remembers: “I was told from an early age ‘you cannot (or will not) do certain things’, but today I can look back, having ticked off a whole list of things, like living independently. In 1993 I started driving lessons - within six months I had passed my driving test on the first attempt and thanks to the Motability scheme, have had cars to get me around. I also worked until I was made redundant in 2004”
Francis started riding around the age of 4 years old, and made it clear that he hated it! It wasn’t until he was 20 years old, that he had the opportunity to attend the Avon Tyrrell Activity Centre where he was given a choice of activities including horse riding, art and canoeing.
“I am not art minded and petrified of water!!” he recalls.
Francis was put in touch with the RDA National organisation who connected him with a local group in South Buckinghamshire. The rest is history. Since
“Simple, but the days can last up to ten hours and it can be exhausting over a weekend! I have to make sure the running order and the CDs all tallied, and collect information as to where the music should start and stop. All good fun, but extremely tiring!
Would you like to include your story in a future edition of Together Magazine?
If you’re aged 18* or above and have Spina Bifida or Hydrocephalus, we’d love to feature you in the pages of our magazine which is shared with more than 13,000 Shine members each year.
Email your story in no more than 600 words, along with a good quality photograph to marketing@shinecharity.org.uk to be included in a future edition.
*Under 18s must seek permission from their parent or guardian before submitting their story.
Launched in 2015, Shine Health Direct is the largest dedicated home delivery service for people with Spina Bifida. Our hassle free service lets you choose between delivery to your doorstep or, if you’re out and about, somewhere else that’s convenient for you.
Powered by Bullen Healthcare, Shine Health Direct is exclusive to our members and has been specifically developed to meet their needs. To date, more than 1,000 Shine members have switched to the service and it’s easy to see why - with 95% happy to recommend the service to a friend.
Shine Health Direct is unique, offering discreet and efficient delivery of both urology and stoma products as well as prescription medications thanks to the help of our in-house pharmacy, Pharmore Plus. As part of our Pharmore Plus service Shine Health Direct members can talk to a dedicated specialist pharmacist who will be able to give you advice or speak to you directly over the phone.
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We went behind the scenes at Shine Health Direct Headquarters and met some of the team to find out more about what has made the service so successful…
Lesley, Personal Advisor… I feel proud to work for Shine Health Direct, if I could sum it up in just one word it would be ‘family’. As well as placing orders for our customers I also get to speak to them directly which gives them the chance to speak to me for as long as they need, whenever they need.
Speaking to the same people each month really gives me the chance to get to know them personally, giving them the confidence to speak to me about anything and everything. Many customers I now call friends and I hope they can say the same about me!
Ian, Driver… For me, working for Shine Health Direct brings so many rewards. I feel I am more than just a delivery driver and that is what I find the most rewarding. I see many customers on a monthly basis, they now recognise me before I even knock on the door! It is just so great knowing that I am making a difference to their lives providing them with the appliances they need.
On Sunday 16th October our Clinical Director, Denise and Territory Manager, Kerry attended the North and West Yorkshire ASBAH conference event in Bradford. Representing Shine Health Direct, they held a stand showcasing a range of products including ActiBrief and many complimentary items available for Shine Health Direct customers. Denise and Kerry concluded the day with a 40 minute education slot on continence care.
Our very own Chris participated in the Langdale half marathon recently, the most scenic yet toughest half marathons in the UK! This event coincided with Shine’s Spina Bifida Awareness Week and was the last of four events Chris had taken part in throughout September and October.
Starting with the Bristol half marathon, Chris then ran the Great South Run followed by the Royal Parks half marathon all to help raise awareness and make a difference to people living with Spina Bifida and/or Hydrocephalus.
Mr A, Cheshire “…Before I found Shine Health Direct it was a struggle to get the things I needed when I needed them. Now I have somebody who calls me every month to place an order so that I don’t have to worry about running out of stock.
Miss M, Brighton “…Getting both my medication and appliances delivered in one go is a game changer! My advisor Alex checks in with me each month and ensures that I have enough stock to last me until my next delivery. The complimentary items I receive with each order are a bonus!
Mr K, Peterborough “…You give an all-round friendly, helpful and reliable service and the complimentary products are also of a high standard. Overall, I’m extremely happy with your service.”
But it doesn’t stop with home delivery - the Shine Health Direct Team work tirelessly to inform and educate members and fellow professionals and even find time to fundraise!
Hi. My name is Maiah. I am 16 years old and despite having Spina Bifida and Hydrocephalus since birth I have recently been able to take part in a once in a lifetime experience that I would like to share with you.
Birmingham hosted the Commonwealth Games this year and I got to perform in the opening ceremony. I can’t begin to tell you how magical it was for me. All my life I have wanted to perform and have tried not to let my chair hold me back, however it always seemed to, despite what I did.
Shine has a big part to play in my story because if it wasn’t for you guys my passion for dance would never have blossomed the way it did. I found getting connected with the inclusive dance scene was hard and Shine made that happen for me.
I joined a project called Beyond Borders Live which moved me out of my comfort zone, I had to adapt to new environments and perform with others. It was hard. However, many of my fellow dancers were also disabled, and this gave me a sense of not only strength, but of communitylike I belonged.
have so much admiration for everyone there. Closer to the opening ceremony we moved our rehearsals to the real venue, Alexander Stadium - I had never performed in a big venue like a stadium before. It was HUGE… and breath-taking and all I could think of is me actually performing at this stadium in just a few weeks. It hadn’t truly sunk in until the final few rehearsals.
“…To every boy or girl who feels their disability is an obstacle, just know you are worth it and deserve to achieve your dreams…”
I prepared the night before by practicing my dance routine and added lights to my wheels (to stand out from the crowd for the 40,000 people in the audience). I was so nervous… but very very excited I couldn’t wait. On the big day, I woke up with adrenaline and excitement rushing through my veins. When we got to the stadium, it was so busy, with security guards and lots of traffic. More than anything I’ve ever seen and then it was just a waiting game to prepare for our performance.
The moment we started to line-up I had a moment of realisation...I couldn’t believe what I was about to do.
With my self-esteem raised, I went on to perform with Critical Mass. They encouraged me to believe in myself and not let my disability hold me back. I loved it and found myself looking forward to attending every dance rehearsal I had, even when that meant travelling to Birmingham after a full day at school and feeling drained. As soon as I started any rehearsal adrenaline and excitement took over when I started to dance!
To prepare for the Opening Ceremony, I began rehearsals in Birmingham. These were rehearsals like I’d never had before. Longer hours and more days. Rehearsing in great big tents with lots of other performers. It was crazy and something I was not used to. It was so great working with professional dancers and seeing other professional companies. However, I did not let this phase me. My commitment and passion for this performance really kicked in. We would all perform outside in all weathers. I literally
As a girl who was shy, lacking confidence and felt my disability held me back to a girl who was 10x stronger and more confident to perform in front of nearly 40,000 people. It was INSANE. I had a tear in my eye because at that moment, I was performing in front of the Royal family specifically, His Majesty the King and Camilla Queen Consort and others. They got to see me and so many others for who we are. That we are more than our disabilities, and that our voices need to be heard. Our segment was called ‘hear my voice’ which really resonated with me our voices should be heard. It was incredible, I felt like a superstar.
One thing I would take away from the experience is that you should NEVER let anything hold you back from your dreams and aspirations because you deserve the best. To every boy or girl who feels their disability is an obstacle, just know you are worth it and deserve to achieve your dreams.
When Huw’s mother was pregnant, she discovered that he would be born with Hydrocephalus following complications resulting from an infection in the womb. His parents were offered the choice of a termination, but knowing they would love their little boy no matter what, decided to continue with the pregnancy.
Huw was fitted with a shunt at 3 months old which served him well, lasting for fifteen years. He admits it was very scary knowing he needed a new one fitting and what that involved and was disappointed when his ‘new’ shunt lasted just three years – its replacement, only two! He’s since had better luck, with his most recent shunt – the fourth – still present today some 16 years later. Add in an extra procedure to correct an over-draining shunt, and Huw’s seen his fair share of hospital beds.
It hasn’t held him back though. Huw grew up on his parents’ farm where, from an early age, he would help out with jobs after school such as herding the cattle for milking. He continued to call the farm home until a couple of years ago when, in Huw’s words, he ‘joined civilisation’ and moved in with his long-term partner Melanie.
Huw enjoyed a typical childhood and never felt different to other kids although in secondary school, remembers he wasn’t allowed to take part in contact sports, including his beloved Rugby. He remains a huge fan of the sport to this day, and enjoyed attending matches prior to the pandemic, noting that the recent cost of living increases have made it harder to afford these days.
Upon leaving school, Huw worked as a trainee at his local GP practice and after 18 months was offered a permanent position which he jokes ‘they must regret now!’. In an extraordinary coincidence, Huw recalls a playful dispute with one of his colleagues in which
he joked “If you’re going to hit me, you can hit me anywhere but the head” A curious cleaner overheard and asked why he’d said that - Huw revealed he had Hydrocephalus only for the cleaner to confirm that she had it too!
Unfortunately for Huw, after just six months in the job, he was admitted to hospital for a shunt replacement. No stranger to these by now, Huw knew what to expect...or so he thought. Shortly after his surgery, doctors discovered an infection in his brain that would keep him in hospital for three long months during which time, the muscle wastage in his legs was so severe that he would have to learn to walk again.
Huw has fond memories of his Neurosurgeon at this time, who he refers to affectionately as ‘Mr Martin’. One day during Huw’s recovery, Mr Martin stopped by to make conversation, asking Huw who his favourite Rugby team was, and if he had a favourite player. “Stephen Jones” he replied, without hesitation. Though he cannot remember a second of it, one of Huw’s prized possessions is a photograph of the two of them together, as several days later, Mr Martin arranged for Stephen to visit Huw in hospital, where he presented him with a signed shirt from the Wales Vs England Grand Slam.
Huw would later discover that Mr Martin doubled as the team doctor for his beloved Scarlets, and laughs “I knew I was in good hands!”
Talking with Huw is a laugh a minute, infectiously positive and always cracking jokes, he recalls passing his driving test at the second attempt, aged 26 and says “I’ve never looked back – apart from in my rear view mirror of course!”.
Most recently, he proposed to his beloved Melanie on their six year anniversary, with the two planning to marry in 2024.
As our conversation comes to an end, Huw remarks that he’s grateful to Shine for it’s many social opportunities, and the chance to connect with other members of the Hydrocephalus community noting “I’ve made a lot of friends that I never would have if it wasn’t for Shine”
“…“I’ve made a lot of friends that I never would have if it wasn’t for Shine…”
Shine’s health team has often spoken about the benefits of regular exercise, and we’d like to share the story of one member, Ruth Davison, and her experience of taking up yoga. Ruth is 62 and has congenital hydrocephalus and a VA shunt. I caught up with Ruth recently at the Chelsea and Westminster Clinic, where she told me how much better she was feeling, all thanks to yoga.
Ruth said "When I was born, my parents were told I would probably never walk or talk. The shunt surgery I had as a baby was very new, and only just been brought over from America. So I’ve done much better than anyone thought possible at that time. But life wasn’t easy. As part of my condition, anxiety has troubled me for many years. Beginning yoga has brought about so many benefits and I feel better now than I have for years".
Ruth said she had begun regular yoga from a DVD and been surprised at the ways it had improved her wellbeing. It was helpful being able to exercise at home; Ruth seldom went out because of anxiety, made worse by the lockdowns and fear of Covid. The DVD she chose was Jane Fonda’s Prime Time, which is aimed at people in their later years.
Physically, Ruth said she was now able to move more freely and comfortably, and her pain has significantly decreased. Her balance also improved as she became physically stronger, so she felt more confident when out and about and less worried about falling. But Ruth said the biggest impact was on her anxiety, which has troubled her for many years. Ruth found that using yoga breathing techniques regularly throughout the day empowered her to bring her
anxiety under better control. Ruth has found using a mindful breathing tool helpful. A small pipe, worn on a necklace, it helps you control and slow your breathing in and out. When we’re anxious, we tend to breathe more rapidly and less deeply. Taking slower, deeper breaths can have a calming effect on our body, which can then calm our thoughts.
Ruth’s DVD has a few different routines so she can vary her movements, and there are some exercises to aid sleep. Ruth has noticed her sleep quality has improved with yoga, and this has benefits in many areas of her life, such as concentration and mental wellbeing.
Regular movement and exercise can help improve pain by keeping our core muscles strong and able to support our back and abdomen. When people are in pain, they sometimes move less often; the muscles then become weaker, especially in the back and legs and sometimes weakened muscles tighten to support joints. This can be very painful, and lead people to reduce their movement even further.
Finding an exercise you enjoy, that you can do easily and independently can make it easier to keep your new regime up. You don’t need to go to the gym to exercise, or buy expensive equipment you may never use, but whatever you choose, have fun!
The benefits affected were Income Support, Income Based Employment and Support Allowance and Jobseekers Allowance, Housing Benefit and Child Tax Credits and Working Tax Credits, referred to now as “Legacy Benefits.”
Benefits such as Carers Allowance, Contribution-based Employment & Support Allowance and Jobseekers Allowance remained unaffected and are often claimed at the same time as Universal Credit. However, they usually count as income and, therefore, reduce the amount of Universal Credit a claimant can receive.
Until recently, the only people eligible to claim Universal Credit, in most cases, were those making a claim for benefits for the first time or claimants of the legacy benefits and Tax Credits whose circumstances had changed. Claimants of legacy benefits whose circumstances had not changed remained as they were.
However, earlier this year, following a small-scale pilot conducted prior to the Covid pandemic, the Department of Work and Pensions (DWP) began a process called “Managed Migration.” This is the procedure that will see all claimants of legacy benefits made to make a claim for Universal Credit.
So far DWP are rolling the procedure out in particular geographical locations in a way similar to how Universal Credit was initially launched. The first areas are Bolton, Falmouth, Medway, Truro, Harrow, and Northumberland but these will be extended to other regions as time goes on. The DWP have a target of 2028 for the completion of the Managed Migration Process
When the time comes to claim Universal Credit, a claimant will receive a letter called a “Migration Notice.” This will tell the claimant that they must begin their claim for Universal Credit and the date when their claim for the legacy benefit will end. In most cases, a claimant will have up to three months to begin the claim process.
Once a claimant receives their Migration Notice, the amount of benefit they receive, assuming they go on to make a claim, will remain the same unless their circumstances change. They will receive a top up as part of their award to ensure that they are no worse off initially. This top up is called the “Transitional Protection Element.” However, the element will reduce over time, such as when benefits are uprated annually.
If a claimant’s circumstances change or they decide to make a claim for Universal Credit before they receive the Migration Notice, they will not be eligible for the Transitional Protection Element and the result might be that they end up worse off. However, some may be better off so it is worth seeking advice prior to any change.
You might find a Benefit Calculator at Turn2US www.turn2us.org.uk or Entitle www.entitledto.co.uk useful to check what impact a change in your circumstances might make.
NB. You can also use a Benefit Calculator to check whether you are entitled to benefits that you didn’t think you could claim. You will need information about savings, income, pension, childcare payments and any benefits you currently receive.
In 2020 the world as we knew it was transformed overnight as the COVID-19 pandemic swept the globe causing widespread panic and confusion. With the virus out of control and a solution nowhere in sight, in March that year, the UK Government introduced a nationwide lockdown.
Shine immediately ceased face to face operations and though we continued to offer support by telephone, email and messenger, the highlight for many of our members - chances to meet and interact with others who share their experiencewas no longer available.
Shine acted quickly to move all scheduled events online to continue giving our members the opportunity to connect with one another during a time of increasing isolation.
Our online events were a smash hit and opened up many new possibilities. Virtual events meant it was easier to involve guests and expert speakers who no longer had to travel, enabling us to offer sessions covering a broader range of topics than ever before. It meant that those who wanted to attend past events but were unable to get there, could now take part in the comfort of their own homes. But most importantly, they offered a connection to the outside world at a time when self-isolation kept interaction with others to an absolute minimum.
Given the world has largely re-opened for business, and that we now know much more about how the virus is spread and what preventative action to take, not to mention that many are better protected today due to the availability of a vaccine, we feel the time is right to re-introduce those face to face events which proved so popular and give those whom can do so the opportunity once again to connect with one another in person.
So, whether you’re looking to raise money for Shine, meet up with others, want to learn more about your condition or need help with day-to-day issues around learning, living and working – we have an event for you and a packed schedule of opportunities over the next six months to get together and share our knowledge, skills and experiences with one another.
Made popular during the pandemic, these live sessions are broadcast in real time on our Facebook page. You can watch along and ask questions in the comments box which are responded to in real time by one of our Health or Support and Development teams, helping you to get the most out of the These live sessions are also available to watch on demand in the videos area of our Shine Facebook page facebook.com/shineukcharity
For those who feel more comfortable tackling sensitive subjects ‘behind closed doors’ our prebookable closed Zoom calls give you access to Shine support staff to ask whatever’s on your mind without the prying eyes of social media. With both one-to-
one appointments and group sessions available, the content of these sessions is strictly confidential and available only to those who’ve booked their place in advance – all measures are taken to review bookings in advance so that access is limited to those for whom these events are intended.
Back on the calendar for 2023, our in-person meet ups offer valuable opportunities to get together not just with the support staff you might interact with here at Shine, but to meet others who have the same condition, share experiences and make friends (in some cases, friends for life).
For safety reasons, face to face events often have a maximum number of people who can attend, so book early to avoid disappointment.
Elise and Mark had been told that the red dimple and birthmark on their new baby’s lower back was nothing alarming. Doctors had noted the birthmark in Olivier’s baby book but after that, nobody else seemed worried.
When Oliver was between 8 - 15 months old he started refusing solid food. Elise and Mark took him to see the GP who diagnosed him with an infection and constipation and sent them home with antibiotics. After two days of treatment Oliver continued getting worse - he was crying a lot and even though he had been drinking water, he had barely been able to pass any urine for hours. After being transferred to the child assessment unit of the hospital, seeing a number of different doctors and having many scans, Oliver was diagnosed with gastroenteritis.
Over the next few days Oliver had to go back to hospital after developing a big rash that doctors put down to being a symptom of a viral cold. The day after, his leg went numb! Oliver was admitted to the Children’s hospital about thirty miles from home where he soon developed a high fever and was still struggling to pass urine. Oliver was diagnosed with a urinary tract infection and was given anti-biotics BUT doctors also carried out further tests.
An MRI scan of his lower back showed huge lesions (areas of damaged tissue) on his spine. Oliver had emergency surgery and only then, was he diagnosed with Spina Bifida Occulta. There was a hole between his sacrum and his spine which was open and had allowed bacteria to enter. The bacteria had then moved into the spinal cord causing the big abscesses which put pressure on Oliver’s nerves causing the leg paralysis and affecting Oliver’s bladder.
Oliver’s parents needed time to take in this information. Understanding why Oliver was unwell relieved some of the uncertainty for them but knowing that his symptoms were not going to go away was significant.
Mark and Elise wanted to understand whether Oliver’s condition should have been diagnosed earlier and, if so, whether his complex issues could have been avoided. They weren’t happy with the answers from the doctors that had treated Oliver as a baby, so they sought legal advice.
Elise and Mark found Shine’s online Legal Service around the time that Oliver turned five and contacted one of the firms listed as a partner on Shine’s Legal Service as they wanted to make sure that their solicitor would be able to understand Oliver’s condition.
After investigation, the firm’s medical negligence team demonstrated that earlier diagnosis would have resulted in Oliver going into surgery to remove the tract. If the tract had been removed, then the bacteria would not have been able to get in and both the spinal lesions and subsequent nerve damage would have been avoided. There would have been no permanent effects on Oliver’s mobility, bladder and sexual function.
As this case was complex, a less experienced solicitor might not have understood where the medical treatment provided had gone wrong.
Even though Oliver’s claim has not yet been settled, the family has been given interim payments to meet his immediate needs – and all thanks to our team of experts who fully understood the complexities and effects of Oliver’s missed diagnosis.
Visit www.shinecharity.org.uk/oliver for Oliver’s full story If you, or anyone you know, think you may have a claim for clinical negligence, please visit www.shinecharity.org.uk/legal-service/shine-legal-service to find Shine’s Legal Service solicitor in your area, who will be able to give you expert advice and support.
Supporting you to get the right legal advice and support as soon as possible.Delivered in partnership with
One of the many ways we raise money to support our members is through Shine’s virtual balloon races. Aimed at businesses, we hold 10 races each year, they’re simple and fun, and as the races are online, they are environmentally friendly too!
You can...
• Personalise your balloon by choosing from a range of shapes, colours, and patterns, and even add a photo and message
Virtual
• Track balloons via the online race page
• Get race updates via Twitter
If you run a business, or if the company you work for might be interested in taking part, go to shinevirtualballoonrace.com or call Gayle on 07780 134556.
We know that writing a will is an important step towards making sure your wishes can be respected and a gift in your Will to Shine really does make a huge difference.
Every single legacy gift, large or small, will mean we can continue to be there for our members today, tomorrow and long into the future. For over 55 years, we’ve helped change the lives and futures of so many people affected by Spina Bifida and/or Hydrocephalus but we have so much more we need to do.
If you would like to find out more, please go to shinecharity.org.uk/legacy, get in touch by e-mail fundraising@shinecharity.org.uk or call us on 01733 555988.
Get inspired by our supporters and add this challenge to your
On Saturday 8th July 2023, join #TeamShine in this amazing adventure! The Yorkshire 3 Peak challenge allows you to climb the three highest peaks in Yorkshire (Pen-yGhent, Whernside and Ingleborough). You’ll take in over 5000ft of ascent and descent over a distance of roughly 24 miles and see some of the best scenery in the UK. You’ll trek alongside other Shine supporters and a qualified, first aid trained mountain guide provided by our partner, Kuta Outdoors. If 3 peaks sound a little too ambitious, check our 1 peak challenge by visiting the session ‘Events’ on our website www.shinecharity.org.uk/events
Joe Saunders
17-year-old member rode Coast2Coast across England on his ICE bike – over £3,000 raised for Shine
Carrie and Alison Carrie and Alison, with friends and family, have raised a fantastic £4,369 for Shine
Michelle Milton Ivy’s Mum, Michelle raised £1,700 from an u12s charity football match and race night on same day
