Shine Together Magazine - May 2019

Spring 2019 Issue 24

Bladders, Benefits and Bathing Everything you need to know‌

Spina Bifida in the Spotlight An Interview with Sarah Jayne Dunn

Remembering Awareness Week Our biggest celebration to date

Plus lots more exciting Shine news inside!

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Spring 2019

An update from Kate…

Hi everyone, and welcome to the latest edition of Together, our exclusive members’ magazine.

I can hardly believe it’s that time again, and as ever, there’s been quite a lot happening here at Shine and beyond, but don’t worry, we’ve got it all covered in yet another packed issue.

We love to bring you a mix of inspirational stories from the Spina Bifida and Hydrocephalus communities, as well as all the latest news and updates affecting you. You’ll also hear about the hard work of our many supporters who raised thousands of pounds in recent months so that we can continue to deliver vital services - we’ve also got a special interview with Sarah Jayne Dunn, star of Channel 4’s Hollyoaks, whose character recently learned that her unborn baby has Spina Bifida.

We hope you’ll find the magazine useful and insightful, and as always, if you have an idea or story to tell for a future edition, we’d love to hear from you.

Kate Steele Chief Executive

Together is going digital Starting with the September 2019 edition, Together Magazine will only be sent to members electronically via your nominated email address.

If you’d like to check, or update the email address we hold for you, just give us a call on 01733 555988 or email firstcontact@shinecharity.org.uk …and don’t panic! If you’d still like to receive a paper copy, you can ‘opt in’ via our website and we’ll continue to post it to you twice a year.

Head over to www.shinecharity.org.uk/together, fill in the short form, and we’ll take care of the rest.

GDPR, the latest…

Following the introduction of GDPR (General Data Protection Regulation) which we wrote to you about back in May 2018, we’ve updated our data protection procedures and privacy policy.

We wanted to make sure we are managing your data securely, and to the highest possible standards, so after seeking advice and guidance from the Information Commissioner’s Office (ICO), we’ve amended our policy to process data on the basis of legitimate interest, rather than consent.

It should not mean a change in how we contact you or how often, and you can still change your communication preferences, or easily opt out of any future communication from Shine at any time. To do so, just give us a call on 01733 555988.

You can view our privacy policy online at www.shinecharity.org.uk/privacy

Spring 2019

Special Educational Needs Reform in Wales In September 2019, statutory statements of SEN and non-statutory School Action and Action + will be replaced by the new Additional Learning Needs system in Wales.

The ALN system is designed to introduce a more inclusive process, ensuring that the views of children and young people and the opinions of parents are considered throughout the drawing up of a pupil’s Additional Learning Needs and their Individual Development Plan.

For a video explaining the reforms, visit shinecharity.org. uk/senreformwales or go to www.gov.wales and search additional learning needs

A rise in ‘Changing Places’…

The Changing Places campaign, which is striving for an increase in the number of accessible toilets across the UK, received positive news recently, with the announcement that Ministers are to take action in light of findings which show that just over 1,000 changing places currently exist to meet the needs of a quarter of a million people who need them.

Plans include a review into standardising the availability of changing place facilities available in large public buildings, as well as commitment to extra funding in order to increase the number of changing places available within the NHS. For more about the campaign, or to find your nearest accessible changing place, go to www.changing-places.org

Keep your hydro records in your pocket!

Whether you’re travelling abroad,or popping to the shops, thanks to a fantastic new app developed by our American counterparts, the Hydrocephalus Association, you can now take your medical records with you!

Dr Abhay Moghekar, neurologist and one of the apps founders said “While caring for my patients with hydrocephalus, I realized the lack of an easy system to track the shunt settings and surgeries my patients underwent.

In an effort to assist both medical practitioners and patients alike, I decided to team up with my colleagues to develop a smartphone app,” The app is completely free and available to all mobile device users.

To install, head to the App Store and search HydroAssist

Study finds adults with Spina Bifida ‘most likely to live independently’ St George’s University of London recently published the findings of an unprecedented 50 year study into the lives of adults with Spina Bifida.

Since 1972, more than 100 adults were surveyed every five years as part of the unique study, carried out by Professor Pippa Oakeshott. It found that while mobility is still tending to decline later in life, independent living in adults over 50 years of age had doubled to over 50%.

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Spring 2019

Shine Health…

A New Era..

Our popular Shine Health service has been boosted by the arrival of two new members of staff in recent weeks, with Paige Gibbons joining us as Health Development Officer, and Jenny Smith-Wymant taking on a brand new role as our Health Engagement Officer.

Together, they will be working to answer our members queries, develop information and services as well as leading campaigns to make sure Shine’s voice is heard by health policy makers.

Paige has degrees in nursing and is a qualified Health Visitor, while Jenny brings a degree in Biomedical Science, a PhD and a wealth of experience in health and science engagement.

Now they have completed their induction, they’ve got their hands full and will be working, amongst other projects, on: • Driving improvements in health services for adults with spina bifida • Producing new information for adults with Spina Bifida and Hydrocephalus on issues such as pregnancy, eye health, sex and fertility for men and women • A campaign promoting taking folic acid/B12 before pregnancy • Developing a programme of information and support for parents of children with Hydrocephalus or Spina Bifida

Important Information About Your Bladder Shine has recently been made aware of important research, which has found that bladder cancer affects around 4% of people with Spina Bifida.

Symptoms you might have experienced throughout life, such as blood in your urine, frequent urine infections and bowel obstruction can also be symptoms of bladder cancer, making it difficult for you, and health professionals to spot that something’s wrong, potentially delaying intervention and treatment.

If you have new or worsening symptoms, make sure to contact your GP who can arrange for further tests - in the meantime, we’ve added more useful information to our website, including a list of possible symptoms and a downloadable resource you can take along with you.

It may be that your GP isn’t aware of this recent research, or the increased chance of bladder cancer for people with Spina Bifida, so increasing their knowledge will help them to help you, plus, it’s much easier to treat successfully when picked up early, so if you have any concerns, don’t delay - make an appointment today.

For further info, visit our website www.shinecharity.org.uk/bladdercancer or give our health team a call.

If you have a health query about either condition, give us a call on 01733 555988.

Tell us what you’d like to know more about, and a member of the Health Team will contact you as soon as we can.

Alternatively, you can make an enquiry online at http://shinecharity.org.uk/contactus

Spring 2019

Breaking news for benefits claimants….

There are two big changes on the horizon which will affect many Shine members. Our Benefits Specialist, Bryn Roberts, brings you all the latest news below...

Universal Credit Over the past few years, Universal Credit (UC) has been slowly replacing means tested benefits like Income Support, Jobseekers Allowance and Housing Benefit. Most Shine members will currently receive Employment and Support Allowance (ESA) meaning that the impact so far has been fairly limited. However, this could be about to change.

From July 2019, a process called “Managed Migration” will begin, requiring ESA claimants to move over to UC. Initially, only a small number of claimants nationally will move over, approximately 10,000, before a much larger process begins in 2020.

Individuals who migrate to Universal Credit will have the amount of benefit they receive protected and “frozen”. This is because ESA is currently worth more than UC so there will be no annual increase until UC catches up to ESA. However, if a claimant’s circumstances change before migration e.g changing address, moving in with a partner or a change of job, they may find that they are no longer entitled to ESA and will have to claim UC instead.

The managed migration process, like the introduction of Personal Independence Payments, will take place over several years so it may be difficult to avoid such changes in circumstances. Please seek advice before making any changes. The only people who may continue to have their entitlements protected before migration are single people in receipt of the Enhanced/Higher rates of Personal Independence Payments or Disability Living Allowance

Personal Independence Payments Work and Pensions Secretary of State, Amber Rudd, has announced measures that should mean fewer disabled people are forced to undergo unnecessary benefit reassessments. The announcement stated that new claimants of personal independence payment (PIP) with the “most severe, lifelong conditions” who were awarded the highest level of support and whose needs were not expected to decrease would only receive a “light touch” review of their award every 10 years.

As far as existing claimants are concerned, Shine’s understanding of how this will work is that, starting in 2022, those with current “time limited” awards, e.g. those with ten year awards, will be reconsidered following submission of their reviewed claim.

Since the launch of our Benefits Service in 2017, we’ve received over 800 enquiries! Shine has become an active member of The Disability Benefits Consortium (DBC), a group of dozens of similar organisations concerned with benefits issues related to their members - so far we’ve contributed to a number of DBC consultations relating to Personal Independence Payments and Universal Credit.

Furthermore, we recently met with staff from Capita and Independent Assessment Services, who carry out Personal Independence Payments (PIP) medical assessments, with a view to giving them greater insight into the issues around PIP for our members, and hope to continue the dialogue with them in the future.

For general benefits information, visit shinecharity.org.uk/benefits

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Spring 2019

Fetal Surgery comes to the UK...

At their routine 20-week scan, Bethan and her husband Kieron learned their unborn baby had Spina Bifida.

Many readers will be familiar with having to make the unenviable and difficult choice between having a termination, or continuing with the pregnancy in the knowledge that your child will undergo major surgery shortly after birth. But in recent months, some families have been given a third option, fetal surgery, which was made available in England on the NHS earlier this year.

Fetal surgery is the repair of a baby’s spinal tissue whilst still in the womb.

Whilst far from risk free, clinical studies have shown that earlier intervention can lead to improved health outcomes for children.

plain sailing for the couple, as Bethan explains…

“We’d already decided that if we were to be offered the surgery, we’d 100% take it, but they couldn’t give us any indication at first of whether it would be possible” “We had to meet some seriously strict criteria. Me and baby went through amniocentesis and MRI and relentless scans and when we finally got the go ahead, our lives were a rollercoaster for the next few weeks”

“…“Kieron and I were in

good hands though, we had some of the most recognised surgeons from University College London and around the world looking after me…”

Bethan is only the fourth person to go ahead with the procedure since it became available in the UK. Prior to December, women have had little option but to travel abroad for the operation, keeping them far away from the personal and medical support networks which are so important before, during and after surgery.

Whilst it may sound like the perfect solution, it wasn’t all

“Kieron and I were in good hands though, we had some of the most recognised surgeons from University College London and around the world looking after me - one of them told me afterwards that he’d held my baby!”

“As the anaesthetic began to wear off, we could already feel her kicking and just a few days later there were noticeable differences in her scans”.

At time of going to press, mum and baby are still recovering from their adventure, with baby Eloise expected to make her second appearance in the world in April - We wish Bethan and Kieron all the very best and look forward to joining them in celebrating their little one’s arrival very soon.

Fetal surgery - The facts Open pre-natal surgery is not a cure for Spina Bifida and in some cases, may make no difference at all - Shine are on hand to provide reliable information and support so that each family is able to make an informed decision which is right for them.

The surgery is not suitable for every pregnancy and there are strict criteria which must be met, such as BMI range. Shine welcome medical advances which may potentially improve the health and social outcomes for a baby born with spina bifida and are delighted that for some families, there is now a wider range of options to consider.

Spring 2019

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Perseverance Pays Off! Sue Jones, 50, recently graduated, having completed thankfully there was no infection. A few days later I had her PhD at Manchester Metropolitan University a shunt fitted. focusing on pollution in the airport “Shine were great throughout. They environment. Now a lecturer in gave really good support and being …“Shine were great ‘Geographical Information Systems’, part of the Facebook group, talking throughout. They gave Sue shares her experience of life with to others about their experiences, really good support and hydrocephalus. also helped - I’ve developed good

“

“All my life I’ve suffered with headaches. I’d have them every day and took tablets all the time. The doctors said it was migraine and never investigated further. It was debilitating.

being part of the Facebook group, talking to others about their experiences, also helped…”

“About six years ago my ‘migraines’ changed. I started getting visual disturbances. I’d feel very disoriented, and confused. It was very frightening, and then the pain…

“I was out for tea with a friend when I started to feel strange. I couldn’t remember her name, though we’d been friends for years and I couldn’t work out which of my tablets to take.

“One day when I was driving home, I wasn’t sure where I was. My husband, John, had to find me and collect me. That’s when I decided to go to the doctor..

“I was referred for a scan, and called in to see the neurosurgeon. I was in total shock as they explained that that I had congenital hydrocephalus (present from birth) and that my brain had learnt to compensate over the years. As I got older my brain was less able to compensate. I had a very high level of excess fluid in the brain.

“In November 2014 the pressure went through the roof.

I had emergency surgery to fit an external ventricular drain (EDV) to relieve the fluid pressure in my head,

friendships through the group

“I sometimes struggled to concentrate and retain information at school, especially at secondary, even though I worked hard. I realise now that the problems I had then were due to having hydro and never having a diagnosis”.

“I went back to study when I was 36, as I wanted to teach. Having achieved a First Class Honours Degree in Geography I landed a teaching role in a local university. Alongside my job I was given the opportunity to study for a PhD. That took seven years, while working and looking after a family.

“Studying with hydro might be more challenging, but it’s important to believe in yourself – you can do it. I’d had a deterioration in memory and felt down, but the more I persevered and studied, the more I’ve trained my brain and believe that has improved my memory. It’s challenging, but persevering pays off.

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Spring 2019

Remembering Awareness Week 2018!

October marked the biggest and best Awareness Week campaign in Shine history, with over 70 events taking place across England, Wales and Northern Ireland, a significant breakthrough in the fight for fortification, and lots of great thoughts, feedback and stories shared by Shine members. See if you can spot yourself, as we relive some of the highlights!

Lots of you shared your stories with us as part of the event! If you’d like to learn more about some of our many members, you can read these inspirational accounts online at www.shinecharity.org.uk/yourstories

You helped raise

Sports Stars Shine!

We look forward to doing it all over again with this year’s Awareness Week getting under way on Monday 21st October 2019.

£15,500!

Save the date and start planning your event now, and together let’s smash that record next time! For fundraising tips and ideas, visit www.shinecharity.org.uk/getinvolved

Shine in Parliament

Tour de France Winner Geraint Thomas adds another yellow jersey to his collection! (above) The stars of Premiership football club Watford FC (Left) and St Helens Rugby Club wear yellow in support of Shine.

Labour’s Owen Smith MP (right) leads the celebrations when Shine campaigners visit parliament as Government announces a consultation in to fortification of flour with folic acid.

Cross party support, as Conservative Michael Fabricant and Labour’s Jessica Morden

(Pictured with Shine members Liz Walbyoff, Aidan Daly, Ali Mahraj and Ash Patel) add their names to the growing list pledging support for the campaign.

Spring 2019

Save the date!

Don’t forget this year’s Awareness Week is on

Monday 21st October

Members meet the Mayor...

Shine members in Peterborough and Northern Ireland were invited to Mayor’s receptions, where they received the red carpet treatment at special events to mark the week long celebrations.

Some lucky people even got to wear the famous mayoral chains!

The community comes together!

Businesses, clubs and schools were quick to get into the spirit of things, going yellow at events across the country and helping raise valuable funds and awareness of the conditions.

Buildings Beaming!

As has become customary, beautiful buildings all across the country lit up the night sky to mark Spina Bifida and Hydrocephalus Awareness Week!

Far left clockwise: St George’s Hall, Liverpool, Cardiff City Hall, Spinnaker Tower, Portsmouth and finally National Library of Wales, Aberystwyth.

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Spring 2019

Spina Bifida in the Spotlight We caught a few moments with Hollyoaks star and Shine’s newest Ambassador Sarah Jayne Dunn, who told us how it feels to be at the centre of the show’s high profile Spina Bifida storyline…

A story like this is a huge responsibility, how has it been received so far?

“I feel honoured to be given such a great storyline!

Lots of people have got in touch with me and said it’s not talked about enough, and that it’s really good we’re raising awareness - mums that have been in (my character) Mandy’s situation have contacted me too, which is great!”

Do you think the story will help to change people’s perception of the condition?

“It’s been eye opening so far! At first, Mandy was unsure what to do, but during a special episode of the show, she attended an awareness event in the village,

getting to meet and interact with lots of different people all living happy and fulfilled lives”.

“It makes her see how beautiful life can be - and that, as long as she has a support unit around her, she and her baby can lead a normal life - I hope the viewers and people who find themselves in this situation in future, can come on a similar journey with us”

Soaps play an important role in raising awareness of issues like these, where do you start in terms of research?

“We’ve got a fantastic research team, fantastic writers and we’ve been working closely with Shine to make sure we get things right. Shine has been amazing, and so helpful, they’ve been on hand to answer all my questions, and arranged for me to meet three wonderful mums whose kids have Spina Bifida - they were all so honest and open about sharing their experiences.”

We’d like to praise everyone involved, for their thorough and diligent research to date, and look forward to seeing how the story plays out over the coming months.

Images courtesy of Lime Pictures and Tony Knox

The story is in good hands…

Back in February, Hollyoaks aired a groundbreaking episode focusing on disability in honour and celebration of its talented, diverse cast, with executive producer Bryan Kirkwood noting “We have exceptionally talented leading actors with disabilities or additional needs and it’s important they star in huge stories rather than fade into the background”.

To mark the occasion, Sarah made a special request… “I actually asked whether Mandy could wear a yellow jumper it’s such a bright and hopeful colour, and a subtle nod to the support we’ve had from Shine”. It’s just a shame she didn’t spot our awareness stand at the event :-)

Spring 2019

The benefits of bathing...

We’re often asked questions about bath and showering adaptations, so Shine’s Kathy Allen has teamed up with fellow Occupational Therapist Kate Sheehan, to produce this useful guide to the benefits of bathing.

Whilst the tips below focus on parents and children, rest assured they are just as relevant for our adult members!

Bathing is defined as ‘a washing or submerging of something, particularly the body in water for the purpose of cleansing’.

However, is getting clean the sole or indeed primary purpose of using a bath? There are in fact a number of reasons why bathing is important.

Routine & sleep Parents often use bathing as part of the evening routine to prepare our children for sleep but do we understand why?

There is evidence that demonstrates sleep is induced by the body’s natural cooling and the research suggested that following a bath the body is cooled more rapidly, inducing a higher quality and less fitful sleep. The impact of this on parents and carers is potentially life changing.

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Is there funding for bathing?

Local Authorities often state they ‘do not fund baths’ or would prefer to use showering as a means of personal care.

However the legislation (Housing Grants, Construction and Regeneration Act 1996) states that a person can receive funding for a ‘Bath/ Shower (or both)’ It is therefore critical that when receiving an assessment from an occupational therapist you work together to understand the goals for your child with regards bathing, e.g. play, personal care, reduce joint pain and ask them to articulate those needs in clinical reasoning to the grants department. If you are turned down ask why and challenge the decision.

For further support and advice, contact Shine or contact Kathy directly at Kathy.allen@shinecharity.org.uk

Independence skills Learning to wash yourself is part of growing up and for children with spina bifida who may have limited movement and sensation in their lower limbs laying in a bath may be easier than a shower.

Well-being Many people bathe to support their child (and themselves) to unwind, relax and take time to talk about the day. The process of mental de-cluttering is incredibly important for our mental health.

Physically, bathing is often used to soothe aching joints and manage pain - without which the bather would be less independent and able to cope with the day-to-day physical strain put on the body by completing everyday tasks.

Kate Sheehan is an occupational therapist with over 30 years experience and specialises in housing and equipment.

She is passionate about putting the client first, exploring what home means to a client, getting away from a medical approach and looking at what is going to make a clients’ house their home.

For more information about Kate and her work, visit www.theotservice.co.uk

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Spring 2019

THE

for

Fight Fortification campaign Regular readers will know that Shine’s campaign for the fortification of flour with Folic Acid has gathered momentum over the past twelve months. Here’s an update on what we’ve been doing, and where things currently stand…

02.05.2018

16.05.2018

Shine launches the ‘Fight for Fortification’ campaign - a Parliamentary briefing, sponsored

by Owen Smith MP (Labour) and Nigel Dodds MP (DUP) takes place at Westminster.

Owen Smith MP leads a Parliamentary Debate, and Informed evidence is presented to the Minister for Public Health, Steve Brine MP. In response, Steve Brine states that he is keen to meet with Shine.

11.09.2018

27.06.2018

APPG meets, focusing on how living with spina bifida or losing a baby to anencephaly affects individuals and families, and why the Government has to act now to introduce mandatory fortification of flour with folic acid.

23.10.2018

An All Party Parliamentary Group (APPG) on folic acid fortification is formed and an Early Day Motion calling for the mandatory fortification of flour with folic acid is tabled, with MPs encouraged to sign.

23.10.2018

Shine holds a drop in Q & A session in parliament. An in-depth briefing document is issued to all serving MPs.

Minister for Public Health Steve Brine MP announces that the government is to launch a formal consultation. When asked whether the consultation will look at ‘whether it should happen, or how it should happen’ he states “I’m convinced that the evidence is overwhelming and that this is something which we should be doing”

09.01.2019

25.10.2018

Questions are tabled at the House of Lords.

Responses show that many remain ill-informed about folic acid and its importance. Shine will contact those who responded to questions in order to provide them with clear and correct information.

What happens next?

14.01.2019

A second parliamentary debate is held in conjunction with World Spina Bifida and Hydrocephalus Awareness Day, with MPs asking questions in order to better understand the detail of the consultation, and to raise specific points of emphasis.

The planned consultation, announced in October by Steve Brine, Minister for Public Health, has not yet launched. Shine, and others, are keeping up the pressure to ensure that the consultation happens, and mandatory fortification of flour with folic acid remains high on the agenda.

12.02.2019 Shine speaks about the importance of mandatory fortification to food and nutrient manufacturers, and Westminster officials at the All Party Parliamentary Food and Health Forum.

10.04.2019 Shine meets with other key organisations such as the Royal College of Obstetricians and Gynecologists, the Women’s Medical Association and the British Dietetic Association to discuss next steps for the campaign.

01.05.2019 Folic Acid Awareness Day will once again put the spotlight on the importance of folic acid through mandatory fortification and supplementation.

A parliamentary drop in for Ministers, MPs and Members of the House of Lords will take place in Westminster.

FOLIC AC IAD Y AWARENESS D

y a M t s 1 y a d s e n d e W ord.

Help us spread the w

d n on social media an Join the conversatio areness of Folic Acid help us raise more aw needs to take it. and why every woman , visit: For more information

www.folicforlife.com

Find us on Facebook or Twitter @ShineUKCharity Registered charity: 249338

Because you never know

Shine Health Home Delivery is Changing...

Your new and improved home delivery service Shine Health Direct launches on Monday 13th May. If you’re already a member, there’s no need to do anything, but if you’d like quick, convenient delivery of your appliances and medication, register for our free service today at:

shinecharity.org.uk/direct or call 0800 023 8857

95%

of our of home delivery subscribers would recommend the service to a friend*

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Spring 2019

Catrin’s incredible challenge…

Shine member Catrin is taking on an extraordinary fundraising challenge for Shine. Pushing herself to her physical limits, Catrin is attempting to cover 365 miles in 365 days, and as you can see from her picture, she isn’t letting the weather get in her way!

Whether walking, cycling, swimming or rowing, Catrin’s stopping at nothing in her attempts to conquer the distance, hoping to raise £3,650 for Shine in the process.

As we go to print, she’s already halfway there, but you can add to the pot by making a donation at: www.justgiving.com/fundraising/Catrin-Atkins - You can follow Catrin’s progress through her regular Twitter updates at @Catrin1979

We’re having a ball!

Shine capped off Awareness Week 2018 in style, hosting a glamourous charity ball in Peterborough. Over 100 guests attended, raising a massive £10,000 in the process!

over 0 £10,00d! raise

We’re looking to go bigger and better this year, with tickets on sale now - so, why not get your gladrags on and join us Friday 20th September 2019 at Peterborough’s Holiday Inn for a wonderful evening’s entertainment.

Tickets cost £60 per person with whole tables available at a discount - the perfect excuse to bring friends and family together for a good cause! For more information, contact fundraising@shinecharity.org.uk

Feathered fundraisers!

Young at Heart A big shout to the Trethomas ‘Young at Heart’ group in Wales, who’ve raised over £2,200 for Shine through their regular raffles.

ove £2,00r0 raised !

An amazing effort and a huge sum which will make a big difference for members in their region.

Shine took a trip to Blackpool for the UK’s largest gathering of Pigeon enthusiasts! We were blown away by the British Homing World committee’s generous £5,000 donation, with our on site tombola adding another £292 to the coffers.

Turns out we’re pretty big pigeon fans now too!

Spring 2019

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How a gift in your Will could help Remember a loved one…

Our new and improved Shine Stars tribute pages are now up and running.

As well as a place online to remember your cherished loved ones, you can now do much, much more.

Light a virtual candle, post comments, memories and thoughts, share pictures, music or videos - you can even set up online fundraising collections to mark a special occasion. It’s all possible thanks to our new partnership with MuchLoved.

Create your online tribute now at www.shinecharity.org.uk/tributes

Did you Double Your Donation?

If you did, then you helped Shine scoop a whopping £6,000 in the 2018 Big Give Christmas Challenge - the challenge which runs each year, automatically matches donations during the week long event The money will help to develop our growing Health service.

So much of our work is only possible because of generous people remembering us in their Will. Gifts in Wills help us fund our services and support in critical areas like health, education, employment and benefits.

It’s thanks to our members and supporters who’ve left a gift in their Will, that so many people can live better with spina bifida and hydrocephalus today. Because of their forethought and kindness, we’ve made great improvements to our services in recent years and we have plans to do so much more.

And even if you don’t think you have that many possessions or much money to leave behind, there are some really important reasons for making a Will.

• To ensure your wishes are carried out. You may not know that if you don’t have a Will, the law decides what happens to your estate – and that might not be what you expect or want to happen.

• A Will makes things a little bit easier for your family and friends at a difficult time.

• To minimise the impact of Inheritance tax. With proper advice, it’s possible to reduce tax on your estate.

• It is a great opportunity to give to the people and causes you care about, like Shine.

For more information please do contact us on 01733 555988 or firstcontact@shinecharity.org.uk and we will be happy to help.

Sunshine Walks Last summer our sunshine walks were a massive hit with members across the country, making the most of the good weather and stepping outside for a stroll.

If you’d like to take part in a Sunshine Walk near you later this year please email our fundraising team for details fundraising@shinecharity.org.uk

Shine Events for Members…

To find out more or book up for an event, phone us on 01733 555988 or email events@shinecharity.org.uk. We also put details of events on our website www.shinecharity.org.uk

Southern Region: Family Easter Party The Carey Centre, Reading 6th April - 2 to 5pm (Suitable for children up to 16yrs) Family Event Special Needs Adventure Playground, Cannock 19th May - 1:30 to 3:30pm Shine Surrey - Picnic The Old Pheasantry, Surrey 7th July - 2:30pm Family Fun Day University of Bedford 7th July - Time TBC Hydrocephalus and Learning Seminars Irwin Mitchell Offices, Birmingham 8th July - 4pm to 7pm Irwin Mitchell Offices, Gatwick 15th July - 4pm to 7pm

Northern Region: Health and Wellbeing Talk Burslem Community Fire Station, Stoke-On-Trent 30th April - 11am to 1pm Play and Stay+ Group Our Space, Newcastle-under-Lyme 8th June - Time TBC Staffordshire Adult Members Group Last Tuesday morning of the month Contact for times and venues Shine Teenies (Children 3 to 4yrs) Liverpool - Contact for dates and venues

Good to Talk (Adult Mental Health) Manchester - Contact for dates and venues Little Stars Childrens Group Bradford The Bradford Toy Library, Bradford 2nd Thursday of every month 10am to 12pm Little Stars Childrens Group - York Contact for dates and venues North East Spina Bifida and Hydrocephalus Support Group The Time Lamb Childrens Centre, Newcastle upon Tyne 4th Sunday of every month Contact for times

Northern Ireland: Lurgan Parents’ and Children’s Group April 13th June 8th November 9th Belfast Parents’ and Children’s Group May 11th 12th October Summer Drama Scheme, Belfast August 19th – 23rd “Try It Day” Antrim September 14th “Family Conference” Dungannon 26th October Christmas Party, Belfast 7th December

Wales: Easter Teddy Bears Picnic Margam Park, Port Talbot 26th April - Time TBC South East Wales Meeting Harvester Borderer, Newport 8th May - 2:00pm to 4:00pm Shine Cymru Health Hubs (Children) The Courtyard, (Darcy Business Park), Llandarcy 3rd April - 9:30am to 4:00pm 3rd July - 9:30am to 4:00pm One Stop Support Groups (Adults) The Courtyard, (Darcy Business Park), Llandarcy 3rd April - 9:30am to 4:00pm 3rd July - 9:30am to 4:00pm Rhydyfelin’s Children Centre, Pontypridd 1st May - 9:30am to 4:00pm 4th September - 9:30am to 4:00pm Equinox Physiotherapy Partnership, Carmarthenshire 5th June - 9:30am to 4:00pm South Wales Ser Bach Groups Time and venue TBC 1st June 3rd August North Wales Ser Bach Groups Time and venue TBC 25th May 20th July

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