Shine together magazine winter2016(online)

Winter 2016

Our 50th Celebrations Continue as we light up for Awareness Week!

Shine’s Golden Anniversary is kindly sponsored by the BGL Group.

Help to shape Shine’s future page 3

Celebrating our Heritage page 6

Shine Awards page 7

Shine Health Home Delivery page 11

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News

Together – here for you Here to help...

Please do send any comments or enquiries to us: P: Together Shine, 42 Park Road, Peterborough PE1 2UQ T: 01733 555988 E: together@shinecharity.org.uk F: Facebook.com/ ShineUKCharity W: www.shinecharity.org.uk Registered Charity No 249338 Company Number: 877990 Please let us know if any of your contact details have changed.

Let us know if you would like a large print (text only) version of Together. © Shine. 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.

Scan away!

Our QR code takes you straight to the Shine website when scanned. Go on, give it a go! (If you’ve not done this before, first download an app that reads QR codes from your App Store, and follow the instructions to scan.)

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Looking forward to Bright Stars in Northern Ireland, thanks to Big Lottery Fund Shine is delighted to report that a grant from the Big Lottery Fund of nearly £420,000 will enable Shine to develop the new ‘Bright Stars’ project in Northern Ireland next year. This will offer specialist support for families with children aged 0-10 with spina bifida and hydrocephalus. As part of Bright Stars, two Support and Development Workers - covering the east and the west of NI - will provide practical guidance on issues such as equipment, housing adaptations and coping with change - such as when a child starts school - and will run a range of activities including peer groups for parents, support for siblings, and the development of information resources.

Shine’s Director for NI, Cathy McKillop said: “This is very exciting. The BLF grant will help to ensure that families affected by spina bifida and hydrocephalus get the best start in life - in particular that the children are able to participate in mainstream social, education and other opportunities to reach their full potential.”

Welsh Government Boost for Early Intervention Shine Cymru are delighted to announce that Brenda Cheer, Paediatric Specialist Continence Nurse, has been appointed on a part time basis to support our Early Intervention Project, working with babies and children under 11, thanks to 3 years’ funding from the Welsh Government’s Sustainable Social Services Programme.

Helen Allen has been appointed as a Support & Development Worker for Shine Cymru, thanks to funding from the Big Lottery.

Shine consulting on government benefit plans

As a member of the Disability Benefits Consortium (DBC), Shine has been involved in a consultation on how the Employment and Support Allowance (ESA) assessment system could be improved. This includes potential to exempt some people from constant reviews. Plans to end face to face appeal tribunals and use an online system are also being considered. See Shine’s response at bit.ly/2f3jZcs and for information on DBC: bit.ly/2fYAiYY

Tribunal decision may affect Personal Independence Payments

One of the tests to assess eligibility for the PIP Mobility Component is to see whether the claimant can walk ‘to an acceptable standard’ (yet to be defined in law). An Upper Tier Tribunal Decision, CPIP 665 2016, has clarified that if a claimant ‘pushes through’ pain or discomfort when walking to reach their destination, even if they walk further than the required distances on the claim form, they cannot be said to have walked to an ‘acceptable standard’. Therefore, future claimants should note the point at which they suffer pain when walking, not when they actually stop. Claimants who have had their Mobility Component reduced or not awarded might consider reclaiming.

For further information see bit.ly/2fZHNCW and bit.ly/2fZPf0L

Find us… on social media

Share your photos, stories, news and keep up with Shine’s news too!

Engaging you in Shine’s future Richard Astle has stepped down as Chair of Shine. In a heartfelt message at the AGM in November, Richard said: “Shine is a wonderful charity and we can be very proud of what it achieves and what it stands for. Much has changed during my term as Chair, but in essence nothing has changed – Shine remains dedicated to the interests of its members and has passion and compassion at its heart.”

Richard has been a key player in developing partnerships with businesses through Shine in the City, and in raising £42,500 for Shine’s Health Hub through challenges including a 50 mile walk, overseas treks, the iconic London Marathon, Dales Destroyer, and a ‘dash’ across Stamford with 130 Santas, complete with yellow moustaches!

Sincere thanks also go to Austin Crowther and Yvonne Lindsay who have completed their terms of service.

Introducing Shine’s New Chair

Shine to widen stakeholder engagement and representation

Following consultation with the Shine Adult Members Council (SAMC) and agreement by the Shine Board, Shine is to widen its stakeholder engagement and representation.

Our new approach aims to provide more opportunities for more members, families and professionals to advise on the development of Shine services, resources, respond to government consultations on key issues such as health or welfare reform, and share your views to shape Shine’s priorities for the future.

We are delighted to introduce Mark Noakes, Head of Logistics at Marks and Spencers, Castle Donington, as the new Chair of Shine. Mark, from Ranmoor, Sheffield, has also worked for Amazon, Coca Cola, Findus and Cadburys and brings a wealth of experience in management and leadership, strategic planning, governance, organisational development and growth.

Mark has close links with a family who have a child with hydrocephalus, and also served on the Board of a Sheffield-based charity, which supports disadvantaged people back into work. Delighted by his appointment, Mark said: “I am looking forward to this challenge. I have been impressed already by the team of energised and dedicated people who really care and want to do the very best for Shine and its members. We have so much to do in a changing world!”

We also welcome to the board Joanne Williams as Northern Ireland representative. Joanne is a Deputy Principal in the Northern Ireland Civil Service. Her baby nephew Adam has spina bifida.

Wider engagement is developing through online surveys, Facebook groups, email groups, focus groups, meetings with health professionals and others, Shine events, support groups and direct contact with members.

This new move does mean that the SAMC has now met for the last time and Shine would sincerely like to thank all past and present SAMC members for their commitment and many contributions over the years towards informing Shine’s work.

Shine is gathering a list of members and others who wish to be involved in engaging views and feedback on a variety of topics. To be added to the list, contact us at E: firstcontact@shinecharity.org.uk or T: 01733 555988 or write to Services Admin at Shine, 42, Park Road, Peterborough, PE1 2UQ with your name, address (and email address if you have one).

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Overview

Don’t Hide Away Sam and Daniel Gardiner live in Treorchy in Wales, with their lovely family: Lydia (10), Paige (5), two year old twins, Connie and Poppy, and cheeky King Charles spaniel, Alfie. Mum Sam shares how having a daughter with spina bifida has transformed their lives...

“I found out that Poppy had spina bifida when I was twenty weeks pregnant. I was in shock. I couldn’t eat or sleep. I withdrew and felt hopeless, as if I’d failed.

My family were very supportive: “You can get through this!” My mum found Shine’s number and phoned Sian Prince, Shine’s Regional Coordinator for Wales and SW England. Sian chatted everything through with us, including practical things such as catheters - it was so reassuring. From that day something clicked; I knew it would be ok, though I still didn’t tell anyone outside the family for ages!

I went along to a Shine Sêr Bach (Little Stars) meeting. It was really helpful to see what to expect. I felt clued up, so when Poppy was born I was prepared. It’s hard to explain, but it had a massive impact on the family. I don’t know how we would have coped without this support.

At first, when we had to dress Poppy’s back or change her catheter, we tried to keep the children away. We walked on eggshells. Lydia was upset and scared as she was old enough to understand... But now we involve them in everything - it’s so much better - they have adjusted well and

Daniel and Sam Gardiner

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it’s ‘everyday’ now. Connie even asks why she can’t have a catheter!

We rarely have a clear month when Poppy is fully well. There are always hospital stays and clinic visits - one day the neurologist, another an ultrasound scan, another something else. We live an hour away. It would be so good to have specialist clinics, as in other parts of the country, to save the cost and stress of travelling back and forth, the parking and such.

For new families, try to stay positive.

There will be down days but plenty more up days. Your child may have spina bifida or hydrocephalus, that’s a condition they happen to have it’s not what defines them. Let them try new things - they may just need to do it a different way.

Lydia, Paige, and twins, Poppy and Connie

Whatever you do, don’t hide away - speak to someone. I met a lady recently whose 12-year old daughter has spina bifida and never had any advice in all that time. Now we tell everyone.”

Benny & Bella Bear Club bounces into action!

The new Benny and Bella Bear Club is here!

The club is for our 10 year old members and under, and their siblings.

Benny, who has hydrocephalus, has teamed up with his new best friend, Bella, who has spina bifida.

Both bears have lots of fun helping children (and elders!) to learn. New members receive a welcome pack with a bear and an activity book, and ‘Bear-dates’ through the year.

Benny has also visited schools and Shine events and Bella will be joining in the fun next year. Find out more at www.shinecharity.org.uk/ bennyandbellabearclub or phone us on 01733 555988 to join.

Benny Bear is already an author and now Bella is joining in. Her first book, Bella Bear, Our New Baby (written by mummy bear) is already available, and work is underway on Book two - Bella Bear, Now I Am Four - due out in the New Year, which explores Bella’s adventures as she enjoys a school taster day, makes new friends and learns to swim. (You can download the books at: www.shinecharity.org.uk/ bennybearbooks or www.shinecharity.org.uk/ bellabearbooks or phone T: 01733 555988 for a paper copy (£3 each).

Bella book illustrator Alice says:

“Ever since I was 6 or 7 I wanted to be an artist… I have really enjoyed drawing Bella, and getting to know more about her world, her family and friends, and the challenges she faces. She is great fun to draw. I started by making lots of pencil drawings in my sketchbook, working out what Bella would look like, and trying to get to know her.

I tried to make the bears look quite like the existing Benny illustrations, which are just brilliant, and with a nostalgic twist to give them an air of classic children’s illustrations. I also like to put fun little details into the pictures. I hope you like them, and will enjoy reading all about Bella and her adventures.”

You can find out more about Alice at www.alicewood.co.uk and www.littletoydog.co.uk

The Benny & Bella Bear Club is funded by the DM Thomas Foundation and Global Make Some Noise Campaign, for which we are truly grateful.

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Overview

Spina Bifida and Hydrocephalus: Our Heritage!

Heritage logo by Al Davison

A unique exhibition has brought to life the fascinating heritage of spina bifida and hydrocephalus, conditions which have existed for thousands of years.

Enabled by a £60,000 grant from the Heritage Lottery Fund, and support from Shine, the Spina Bifida and Hydrocephalus: Our Heritage exhibition showcases early history, developments in support and treatment and changing attitudes over the decades. Shared personal experiences are brought to life through photographs, artwork and oral histories. Launched at Shine’s Peterborough office, the exhibition will be travelling the country - next at Shine’s 40Plus Conference, Jury’s Inn, Brighton, Tue 21st March. Contact val.stokes@shinecharity.org.uk or T: 01733 421356 for more information.

The Shine Library online archive has also been created, for you to access archived publications and documents, recordings, videos and images See www.theshinelibrary.org

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Heritage Project Development Officer, Marc Lupson, commented: “Bringing this hidden heritage into the open has been a challenging, but fascinating journey. This is really an exhibition about people; the pioneers, doctors, and most importantly, the thousands who make up the spina bifida and hydrocephalus community.

I have only been able to scratch the surface of this rich and deep history.”

“The exhibition is totally amazing and beautifully presented. I am still in complete awe of the quilt!”

Donna Hall (Shine member) “It is truly amazing and a real benefit to come and learn the history of spina bifida and hydrocephalus.”

Pat Keeling (Shine supporter) “The quality of the interpretation boards is amazing.” Gillian Beasley (CEO Peterborough City Council)

Shine will benefit from Professor Tom Solomon’s new book, Roald Dahl’s Marvellous Medicine, which highlights Dahl’s interest and contribution to medical science - including helping to invent the ‘Wade-Dahl-Till valve’ that helped thousands of children with hydrocephalus. Published by Liverpool University Press; available from good booksellers.

Go Yellow & Awards #GoYellow lit up our Awareness Week!

Thank you to everyone who took part in our #GOYellow campaign for Spina Bifida and Hydrocephalus Awareness Week in October! Your likes, shares and events are helping us to advocate for better support and services, and you helped our logo bounce its way around the world to reach 72,355 people on Facebook alone!

Prestigious venues around the country lit up for Shine on World Spina Bifida and Hydrocephalus Day, including the Senedd, Cardiff City Hall, the National Library of Wales, Belfast City Hall, St George’s Hall in Liverpool, Leeds Arena, Norwich City Hall and Peterborough’s Avenue of Trees.

Shine Awards Recognise Outstanding Contribution The following people were recognised for their superb contribution for people affected by spina bifida and hydrocephalus: The Shine Volunteer of the Year Award 2016/17 has been jointly awarded to the administrators of the Shine40Plus, Craft4Shine and Café Shine Facebook groups: Sue Skinner, Sue Bennetton, Sarah Killick-Sturges, Rowland Bass, Jackie Moore, Michael Dando and Ali Mahraj. Without these stars, these forums could not provide the support they do. Robin Barnatt received the award from Dave Isom on behalf of the winners who will formally receive their awards at the Shine40Plus Conference in March. (See photo next issue!)

“This group has enriched my life in so many ways, not least when I am having a tough day... a ray of sunshine through those dark clouds. I would like to say a huge thank you to all those involved” (Debra Lynch, Shine40Plus Facebook Group member): Dr CE (Kate) Wildig, Consultant Paediatrician (Neurodisability) has been awarded the Shine Professional of the Year 2016/17. Kate, a member of Shine’s Health Advisory Group, has been instrumental in developing the Spina Bifida Clinic at St Luke’s Hospital, Bradford, which currently supports 36 children and families. The monthly clinic offers holistic care and advice to age 18, arranges home visits and refers to other consultants, so that families don’t have to travel to other hospitals for routine appointments.

Delighted to receive the award, Kate acknowledged the clinic’s specialist team, including the continence nurse, physio, dietician and outreach nurse, and says that: “Streamlining transition to adult services is our next challenge.”

Connor Davies, 18, was awarded Shine Achiever of the Year 2016/17. Connor’s mother had spina bifida and inspired him to make the most of life. Connor has raised funds, awareness and ideas for engaging younger people with Shine, and plans to continue his support while now studying Psychology at Bristol University.

The Royal Pigeon Racing Association has supported Shine for more than 40 years, annually giving a donation from the British Homing World Show of the Year the largest event of its kind in the world. The show has been granted a Shine Special Recognition Award 2016/17 for their soaring support!

Read more about these and other stories on our website www.shinecharity.org.uk/ equality/in-your-own-words With grateful thanks to Coloplast for hosting the Shine AGM and Annual Awards Ceremony in November.

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News

Helping others helped me through change When Stephen Heron from Ballymena embarked on a journey to transform his life a few years ago, he could never have imagined that one day he would take on the Belfast Half Marathon and inspire others to change their lives for the better. Stephen explains: “I was 32 stone, not in a good place, physically or mentally. I needed total bed rest and was struggling with sleep deprivation, diabetes type 2, pressure sores – my health was really going downhill. It became a vicious circle - friends would bring carryouts and we’d watch tv, so not much exercise. I thought: I’ve got to do something or I won’t be around much longer!

I started by eating less and over time was able to get out of bed and go to the gym. I hired a personal trainer – that really helped to keep me motivated – and went to the gym three times a week. I also changed to a healthy eating plan. After nearly

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six months I had lost seven stone and was doing so well my trainer suggested I should think about doing this as a career. So, over time, I gained my Level 2 Fitness Instructor, Level 3 Personal Trainer, then the GP Referral for Exercise, then finally Level 4 as an Obesity and Diabetes Specialist.

Now I’ve lost 17 stone, have started training in bodybuilding, and I have 36 clients, three of them disabled - one with spina bifida. I love this job. It’s one of the best things I ever did. It just shows what we can do! There is no better feeling in the world than feeling that you have helped someone when they needed support.

When I did the Belfast Half Marathon this year it was the hardest thing I’ve ever done. It took four months training! I achieved it in 2 hours 29 minutes and came third in the wheelchair category. It doesn’t matter who you are or what you can do, we can all do something; we can all keep on battling and improving. There is always something you can do to improve your quality of life.”

Stephen Heron Independent Fitness Training info@shiftni.com

Never give up When Jo Pugh was born with spina bifida, her parents were told that she was unlikely to walk and may be ‘very dependent’ on them. Now, at 38, Jo has a full-on life. She is a Project Manager in the NHS, a Spanish tutor, has a degree in Hispanic studies, a busy social life and is also a Shine volunteer. Here Jo shares her story.

“As challenging as my life is, I cannot imagine my life without spina bifida.

Somehow it’s made me who I am.

I have very supportive parents. I owe them a lot. From the beginning they had a positive mindset, saying: ‘It’s not what Jo can’t do but what she can do…’ I find it hard to stop thinking I can do everything, but I wouldn’t have it any other way!

My parents fought hard for me to go to a mainstream primary and secondary school and to university.

I had a support teacher to help at primary, and an ensuite room at uni, but didn’t really need any other support.

I used to live in a Victorian terraced house, with no allocated parking, but mobility issues caught up with me so I moved to a bungalow. This took some getting used to but it was a practical step that has helped my whole life balance.

I have a really active social life. It’s hard to balance tiredness and pain with all I want to do, but I have amazing friends they are pivotal to my life.”

Jo has volunteered for Shine for 10 years, helping in various ways with fundraising, marketing, information services, interviewing, mobility roadshows…

“I love it - no two days are the same.

I’ve gained different skills, and made good friends. It’s an excellent way of giving back. I’ve had substantial medical intervention in my life, so I can give a bit of myself back. I think Shine is an exceptional charity, with a great vision, values and ethos.

A message to Shine members?

“Never give up. Remember that your spina bifida / hydrocephalus is part of who you are. It helps if you can reach a place of acceptance and expose yourself to new experiences and people - I’ve gained so much from volunteering.

Sometimes in the supermarket, I hear children asking ‘why is that lady walking like that?’ but the parents pretend it’s not happening.

I make a point of being open and explaining that my legs work in a different way - the children accept that. We need straightforward conversations to change mindsets.”

I’m also working on a falls pilot for the NHS - they couldn’t have picked a better person! SB affects my balance, so I can’t stand upright on my own - I have to hold onto something. I’ve learnt how to fall so I don’t hurt myself.”

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Health

A Full Life Gerard Dupe is celebrating his 50th birthday year. Gerard has hydrocephalus caused by a sub-arachnoid cyst which was complicated following a fall. His sister Ceri, explains:

Gerard, Ceri and Kevin share their story with members at Shine’s AGM

“Mum was only 22 when Gerard was born, so had three small children under three! I was the eldest, then my brother Kevin, and Gerard was the youngest.

assigned to a ‘delicate’ unit at another school, then to a special school out of county, and finally a residential school nearby but - my parents insisted as a day pupil.

We knew there was something wrong. At four months Gerard was putting on weight, but only because his head was getting bigger (with cerebral fluid), and he started ‘projectile vomiting’. When mum raised this, the doctor told her she was being ‘a fussy mother’ - however, they soon fitted a shunt...! This became infected and was removed at 18 months. Gerard then enjoyed good health and we all went to the same mainstream school.

At 14 Gerard was very unwell and in hospital for 6 months, as the cyst had enlarged. He was far more disabled after this. He had many valverevisions until 18 years ago when a re-programmable valve made a major difference. Thankfully he’s needed no operations since.

Then when he was 5 he fell down the stairs, fractured his skull and had a brain haemorrage. This made his hydrocephalus worse and a shunt was fitted again. Gerard became partially sighted, developed epilepsy and spasticity on his left side. He was

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Our parents had to battle a lot with the professionals. It helps shape who you are. Dad was a van driver, Mum didn’t drive or go out to work so there wasn’t much money, and family lived an hour away. We valued the support from ASBAH (now Shine), including the family holidays. Mum was on the local committee. Meeting other members gave my parents peer support and lasting friendships, and formed positive memories for us.

Gerard has a poor short term memory but an amazing long-term one. He lives with mum and dad, and has a full life. He enjoys drama, swimming, cookery classes and writes poetry.

Latterly he has taken up carriage driving.

We had lots of happy times as a family - that’s what we remember most.”

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Shine Health Home Delivery is our dedicated home delivery service for Shine members who need regular stoma and continence products and prescription medication delivered efficiently and discreetly to their door.

Those members who have joined Shine Health Home Delivery tell us there are three great reasons why they are so happy to be using this service: 1. We call them each month; “previously I was always forgetting to order because of my memory problems but they call me each month so I never forget to place my order.”

2. The quality of service is excellent; “the service is spot on, always receive a call on time and delivery on time too.”

3. There’s a great range of complimentary items; “I love all the freebies that you get with every order, they are so useful.”

To find out more about Shine Health Home Delivery you can contact us on:

www.shinecharity.org.uk/support/homedelivery

Your dedicated

0800 023 8857 @ info@shinehomedelivery.org.uk

Home Delivery Service

Shine Health Home Delivery is a service that has been set up by the charity Shine and which is operated on its behalf by Bullen Healthcare Group Limited and Pharmore Plus.

Shine40Plus Conference 2017 Spina Bifida and Hydrocephalus: Past, Present and Future

A Life Long Opportunities Event for Adults with Spina Bifida and/or Hydrocephalus.

Tuesday March 21st, 10am – 5pm Jurys Inn, Brighton ● Meet others and share experiences ● Get information and specialist advice ● Meet Shine staff and the Health Team ● Learn more about living with Spina bifida and/or Hydrocephalus after 40 ● Take a look at the Heritage Exhibition

Contact Val Stokes T: 01733 421356 or E: val.stokes@shinecharity.org.uk to book by 10th January 2017. Registration fee £10. Accommodation, including accessible rooms, is available at Jurys Inn at a discounted rate for delegates.

Shine40Plus: sharing experiences, celebrating achievements

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Celebrate with Shine

Festive FUNdraising ideas!

Golden Events December 3rd - South Wales Ser Bach - Visit to Winter Wonderland, Cardiff.

Contact Sian on T: 07789 616416 or E: sian.prince@shinecharity.org.uk December 6th - Friends of Shine in Wales. Venue tbc. Contact Bryn at E: bryn.roberts@shinecharity.org.uk or T: 07469 148572.

December 6th - West Wales Christmas Lunch 1pm-3pm Llanina Arms, Ceredigion, SA47 0NP. Booking advisable! Contact Melanie on T: 07789 616460 or E: melanie.hayes@shinecharity.org.uk December 8th - Swansea & South West Christmas Lunch, The Towers, Swansea. Booking essential. Contact Melanie on T: 07789 616460 or E: melanie.hayes@shinecharity.org.uk

There are lots of festive ways to have a bit of fun and do some fundraising this Christmas. Join us for Giving Tuesday, shop using easyfundraising.co.uk on Black Friday, have a Christmas party, or buy someone a fundraising experience like a zipline challenge...

For more info go to shinecharity.org.uk/festivefun Or if you’d prefer to just donate then please do - every penny counts! ● Online: shinecharity.org.uk/donate

● Post: send a cheque payable to ‘Shine’ to 42 Park Road, Peterborough PE1 2UQ ● Text: simply text ‘PIES42 £3’ to 70070 to donate £3

● Tel: or give us a call on 01733 555988 to donate by phone

Spina bifida and you - Just for Men

March 7th, 10am-4pm, Shine Head Office, 42 Park Road, Peterborough PE1 2UQ An opportunity to meet with others and explore how spina bifida affects you, and how to stay well, in a friendly, same-sex environment.

Contact E: gill.yaz@shinecharity.org.uk or E: robin.barnatt@ shinecharity.org.uk for details. Book by February 17th 2017.

Places limited. Event for members over 16. No children, please.

Spina bifida and you - Just for Women

March 8th, 10am-4pm, Shine Head Office, 42 Park Road, Peterborough PE1 2UQ An opportunity to meet with others and explore how spina bifida affects you, and how to stay well, in a friendly, same-sex environment.

Contact E: gill.yaz@shinecharity.org.uk or E: robin.barnatt@ shinecharity.org.uk for details. Book by February 17th 2017.

Places limited. Event for members over 16. No children, please.

We are always adding new events so check out our events page at www.shinecharity.org.uk/our-community/events

December 8th - Jolly Christmas Lunch with Shine, 12.30-2.30pm.

Harvester Borderer, 323 Malpas Rd, Newport NP20 6EP. Booking essential!

Contact Helen on T: 07894 394322 or E: helen.allen@shinecharity.org.uk December 10th - Christmas Party, Olympia Leisure Centre, Boucher Rd, Belfast BT12 6HR. 1.30-3.30pm. Louie the magician will entertain! Contact E: pamela.dickey@shinecharity.org.uk December 10th - Children’s Christmas Party, Craig Y Don Community Centre, Queens Road, Llandudno LL30 1TE, 1.30-4pm. For more, contact Bryn on T: 07469 148572 or E: bryn.roberts@shinecharity.org.uk December 10th - Shine Bucks and Herts Support Groups: Miracles, 10am–12pm, Berryfields Children’s Centre, Aylesbury.

Support group for children under 15 and parents with children who have spina bifida and / or hydrocephalus. Contact Lizzie at E: elizabeth.pottinger@actionforchildren. org.uk December 14th - Cambs 0-5 support group, 10am-12pm, Shine, Peterborough PE1 2UQ. For parents/carers with children aged 0-5 years that have spina bifida and/or hydrocephalus/IIH. Enjoy a cuppa and chat whilst the children play. Siblings welcome.

Contact Sharon on T: 07876 865231 or E: sharon.lapsley@shinecharity.org.uk or Facebook.

January 19th - Education Information Day for parents. 10am-3pm. £10, including lunch. Contact Denise at E: denise.richardson@shinecharity.org.uk for venue details and to book.

(No creche available.)

STOP PRESS: May 2017 - Shine Cymru Paediatric Bladder & Bowel Day, Cardiff. For parents and Professionals.

Contact Sian on T: 02920 813847 or E: sian.prince@shinecharity.org.uk for details.

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