Together Issue 7


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In the seventh edition of Together magazine, weʼve packed as much news, information, features, and events as possible! There’s the regular features including Gobiʼs Gossip, Gill Yazʼs health column, Mike Berginʼs feedback back on all the SAMC activity, and we welcome Emma Enfieldʼs new spot which focuses on occupational therapy.

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Together Issue 7

  1. 1. SHI_Together_Issue7_AW_Layout 1 08/11/2012 14:29 Page 2 Superstar fundraisers Tinchy Stryder SAMC nominations Ian means business Shine’s first Christmas appeal
  2. 2. SHI_Together_Issue7_AW_Layout 1 08/11/2012 14:29 Page 3 Know the best accessible toilets and parking Know the best accessible toilets and parking spaces in your area? Share your knowledge spaces in your area? Share your knowledge Play your part and start adding llocations today, so Play your part and start adding ocations today, so you can be in charge when you’re out and about. you can be in charge when you’re out and about. The more locations you and your fellow wheelchair The more locations you and your fellow wheelchair users add to the WheelMate™ app or website, the users add to the WheelMate app or website, the a more useful WheelMate becomes. more useful WheelMate becomes. Wheelchair users told us that finding clean, accessible toilets is often a major challenge when they’re out and about. WheelMate is designed to change that they’re by letting users around the world create an up-to-date database of accessible around create toilets and parking spaces. WheelMate is available now as a free smartphone app and an online platform. You free pp You o can search, add, rate and comment on locations when at home or on the go. search, Created by Coloplast – Powered by you Created Powered Learn more and start adding locations today at Learn more Scan to download the free WheelMate app free Coloplast Limited First Floor, Nene Hall r Peterborough Business Park Peterborough PE2 6FX The Coloplast logo is a registered trademark of Coloplast A/S. © [2012-04] All rights reserved Coloplast A/S, 3050 Humlebæk, Denmark. registered reserved
  3. 3. SHI_Together_Issue7_AW_Layout 1 08/11/2012 14:29 Page 4 Welcome toTogether CONTENTS Hello again... P4 News P7 Emma Enfield OT Itʼs hard to believe that P10 Health with Gill Yaz we are heading rapidly towards another p12 Christmas appeal Christmas but the cards that we have for P16 Fundraising sale on page 27 confirm that this is true! P19 Silver Dreams Introduction and family workshop Weʼve packed as much news, P23 Northern Ireland information, features, and events into this P25 Events issue as possible, there is so much going on in the Shine community that the demand for articles Together Editor: Tom Scott and photos for each edition is growing and Deputy Editor: Gail Howard growing – thank you for all your contributions! All enquiries and comments to: You can catch up with our regular features Together Shine, 42 Park Road, including Gobiʼs Gossip, Gill Yazʼs health column, Peterborough, PE1 2UQ Mike Berginʼs feedback back on all the SAMC Telephone: 01733 555988 activity, and we welcome Emma Enfieldʼs new Textphone service: 01733 421395 spot which focuses on occupational therapy. Our main feature focuses on Ian Laker and his success in running GBL, a company selling Please let us know if you are happy to wheelchairs for over two decades. Ian talks about receive future mailings by email as this his time at school, his experience as a GB saves on postage and helps the basketball player, and how establishing a environment. business as someone living with spina bifida Email: demands a certain outlook on life. As usual, I would encourage you to get in touch and let us know what you like, what you want to see more of, and to share your news and photos with us. I look forward to hearing from you soon! Submission dates for Autumn edition • Register of interest to submit: 28th September 2012 • Final date for submissions: 19th October 2012 Together Editor • Publication date: 2nd November 2012 Cover photo: Gobi and Ian from GBL. Photo: Tom Scott 3
  4. 4. SHI_Together_Issue7_AW_Layout 1 08/11/2012 14:29 Page 5 News Carl Kicks Benny’s Big his Way to the Top Birthday in Shine Member, Carl Hodgetts 34, who has spina bifida, was awarded Queensgate ... a black belt in kickboxing by the governing body, the On 15th September Benny World United Martial Arts Bear celebrated his birthday Federation (WUMAF), in with a big party at Queensgate 2006. To facilitate Carlʼs Shopping Centre in disability, the federation Peterborough. Many local rebranded his technique to people came to meet Benny ʻfreestyle martial artsʼ, and to share his birthday cake. which involves using his Smiling bear faces were spotted arms and hands to kick around Queensgate throughout opponents, instead of the day, thanks to the success using his feet. of the Benny Bear face painting. Carl told Shine, “I have With a day of party games, been a member of what face-painting and a bouncy was ASBAH, now Shine, castle, Shine had a very for as long as I can productive day raising vital remember and I enjoy awareness and a total of reading the stories in the £672.82. magazine because I get extremely inspired by the things people have achieved!” We are inspired by you too Carl, keep it up! Ed. As you may know Shine Patron, Danny Mills was a contestant in the 2012 series of Celebrity MasterChef. Competing against fifteen other well-known personalities, including Gareth Gates, Michael Underwood, Jamie Theakston and Cheryl Baker, all keen to be crowned 2012 Celebrity MasterChef Champion, Danny made it to the final, and was 4
  5. 5. SHI_Together_Issue7_AW_Layout 1 08/11/2012 14:29 Page 6 Shine’s Paralympic Reports Shine Members, Daniella Jade- Above: Daniella with Jessica Lowe, Lowe, Reporter for the Royal Bermudian Paralympian, whilst Bermuda Gazette and Nicholas sight-seeing in London. Photograph Chiddle, Sports Journalism by Alex Michael. Graduate, share their Left: Nicholas with his Fielder experiences and views of the of the Season trophy, for London 2012 Paralympic Hertfordshire Disabled County Games. Cricket Club Daniella Jade-Lowe Nicholas Chiddle Travelling in London during the Paralympic Games The Sport itself was a joy to behold, was quite an adventure, and overall it was a especially with GB surpassing their medal positive experience. The public places I visited total expectations, and, if the action alone were wheelchair friendly, equipped with ramps and wasnʼt enough to inspire you, then how lifts, to make getting around easier for physically about 80,000 people chanting Jonnie challenged people. Peacockʼs name? The Transport for London staff were very efficient. The best thing about the Paralympics was On one occasion when boarding a bus the ramp the word disabled being essentially dropped malfunctioned. The staff immediately reported this and instead the ability of each athlete was and requested a replacement ramp, which arrived discussed. This may seem like such a basic really quickly and enabled me to board. idea, but there is a huge difference a disabled athlete and an athlete who is To read more about Daniellaʼs experience please disabled; the latter is what every competitor visit should be. Congratulations to Danny Mills! eventually beaten by Emma achievement didnʼt end there. Danny is on course to raise Kennedyʼs culinary skills. In October Danny successfully over £10,000 for Shine, which completed the first Archie Mills includes £2000 from Congratulations Danny from all Memorial Challenge, which MasterChef and this yearʼs at Shine on this great involved cycling with Scott series winner, Emma achievement! Nielsen from Leeds2London Kennedy. THANK YOU to and then, the following day, everyone who made this event However, Dannyʼs completing an Olympic happen and those who extraordinary year of distance triathlon. donated so generously! 5
  6. 6. SHI_Together_Issue7_AW_Layout 1 08/11/2012 14:29 Page 7 SAMC nominations Here at Shine we are working hard to find as many possible ways for people to be involved with your organisation. Gobi Ranganathan, Membership Development Officer, is out and about recruiting new members and raising awareness of who Shine Member Amar we are and what we do. To give Dugal attends a recent you an idea of Gobi’s work, 78 event representing Shine new members joined just last Adult Members Council. year. Benny Bear now has 528 little members in his club, with some babies being enrolled while still Getting YOU involved in their incubators. There are group were also responsible for Time to find new SAMC amazing Shine volunteers up initiating the Shine Health members and down the country, Survey, which has provided so Members serve three years on fundraising or helping out in much information about the SAMC and then they stand clubs and groups. Other health issues faced by our down to allow a new SAMC to organisations for spina bifida members. Two SAMC members, be elected. We have now and hydrocephalus, whether the Chair and Vice-Chair, serve reached that time in the election local, national or international, on Shineʼs Board of Trustees, year when we ask for work alongside us and help to enabling the group to have a nominations for the new SAMC. shape what we do. real influence at the heart of the We are looking for disabled charity. people who really want to be Disabled adults at the heart of involved, who have some time to the charity Everyone is encouraged to play Benny Bear give, who ideally can travel to a few meetings per year and who their part and have a say. One very significant group in all of now has 528 feel they can represent thousands of members who this is the Shine Adult Members little members share their disability. Council (SAMC). This group of members aged 18 and over, are in his club ... What to do if you are elected by the Membership to interested represent them, and to provide SAMC meets four times a year, There is a role description for accurate and up-to-date usually at Shineʼs HQ in SAMC members which information on what it is like to Peterborough, or occasionally at describes what is expected of an live with spina bifida and/or other venues around the country. SAMC member. If you would like hydrocephalus. The current In addition members may attend to view the Role Description members of the council have events, training and local please contact Lynn Hart been involved in helping to groups. Some members, if T: 01733 555988 or shape the content of Shine ʼs comfortable, may be asked to E: Strategic Plan, the name speak to the media, and all and weʼll make sure you receive change, the Go Folic! launch at members will be asked to share a copy. If you feel that you fit the the House of Commons, their life experiences with Shine. Role Description then weʼd really responses to Government welcome your interest. If you are consultations and attending and Shine pays all travel costs, meal not sure, you can call David feeding back on Shine events costs and overnight Isom on 01733 421308 to across the country. Perhaps accommodation costs, where discuss it further. Existing SAMC most importantly, the current necessary, to volunteers. members can apply to stand 6
  7. 7. SHI_Together_Issue7_AW_Layout 1 08/11/2012 14:29 Page 8 Occupational Therapy again, but must follow the same process as new applicants. How to apply Emma Enfield If youʼd like to apply for the role, Shine’s Occupational Therapist simply fill out the short questionnaire attached to the In August I became the Lead Occupational Therapist/ Role Description and send it to Development Worker, on Shineʼs Health Team. I already SAMC Recruitment, worked for Shine as a Support and Development Worker and, Shine Charity, 42 Park Road during my time in this role, it became apparent that a therapy Peterborough PE1 2UQ, or service was greatly needed, so here I am…. e-mail it to Lynn Hart, address mentioned previously. I qualified as an Occupational Therapist (OT) in 1995 and have spent most of that time working as a Community OT in the What happens next? NHS and Social Services. I am thrilled to have this opportunity Your application will be looked at to put my OT skills to work for Shine. by Shineʼs Human Resources Manager and senior colleagues Some of you may have already spoken to me - I respond to to make sure that it matches the requests relating to therapy, housing, mobility, equipment etc. role description. If you pass this So when you contact Shine in the future, you might hear back stage, your name will go forward from me. for election to SAMC. Your name and a few brief details about you will appear in the February issue ... I would love to know of Together (donʼt worry, weʼll talk to you about this first) and about your experiences Shine adult members will be invited to vote for you. The 10 with any therapy services ... applicants with the most votes will become the next SAMC. If I would like to develop the OT service to help Shine members there are fewer than 10 as much as possible. To date, I have mostly received enquiries applicants, the membership will relating to problems with wheelchair services/provisions, and be asked to support their adaptations/equipment needed for people to live independently election as a group. at home, or to reduce the strain on their carers. So these are two areas that I know I need to look into further. Please think about it If you think you have something I am going to be writing regularly for Together and I hope that to offer, please donʼt hold back. you find my columns useful. If you have any ideas for subjects SAMC meetings are fulfilling and you would like to see, please email me and I will aim to cover fun and it is a real opportunity to these topics. develop yourself whilst helping Shine at the same time. If you Going forward, Iʼll keep you updated with all of the exciting have ideas about what we developments. To kick start my work, I would love to know should do, things we should about your experiences with any therapy services that you encourage, or statements we have been involved with, both good and bad! Are there any should make about having spina gaps in the service you have received, that you feel it would bifida and/or hydrocephalus then helpful for me to know about? What would be useful for you this is a real chance to make from a therapy service at Shine? I am looking forward to yourself heard, represent the hearing from you. growing membership, and influence the future direction of E: Shine. 7
  8. 8. SHI_Together_Issue7_AW_Layout 1 08/11/2012 14:29 Page 9 Feature Ian means business Words and photos by Tom Scott Since joining Shine 18 months ago I have met for over two decades. Over the years the shape of a lot of inspirational the business has changed and today, of the characters. However, founding partners, it is only Ian that is still involved it was on a recent at GBL. visit to the wheelchair distributor, GBL, that Earlier this month I went along to see the GBL I met someone who service first hand as Shineʼs Membership has taken such Development Officer, Gobi Ranganathan, was inspiration to the booked in to collect his new chair. next level. The first thing that strikes you upon arrival is the size of the business, this is no small time venture. Twenty two years ago Ian Laker, with his two Ianʼs unit houses every type of wheelchair you can colleagues at the time, started a business selling think of, from the smallest childrenʼs wheelchair to wheelchairs. This was a unique venture in that Ian large electric chairs with hoists and highly technical and his two business partners, Jamie and Steve, disability specific controls. all have spina bifida. More important than this, though, is the warm Ian explains that in the beginning ʻthe phone didnʼt welcome that the staff at GBL offer. You sense ring for three months!ʼ Times were tough, the trio immediately that this is a business that genuinely had committed themselves to a 2000 sq/ft starter values the customer, and this is a direct result of unit, which was hardly filled by their first twenty Ianʼs friendly and accommodating personality. wheelchairs. It hasnʼt only been success in business that has Their fortunes, however, were soon to change – kept the Northampton born entrepreneur busy the phone started to ring and hasnʼt stopped now either. Until recently Ian had been involved in 8
  9. 9. SHI_Together_Issue7_AW_Layout 1 08/11/2012 14:30 Page 10 Features wheelchair basketball for 32 consecutive GBL. Since then a lot has changed, however Ian seasons! also talks about principles that have remained consistent over the years. This included representing Great Britain in the sport and coaching some of the nationʼs more recent The importance of parents to encourage their stars, including Anne Wild. children to be independent, in spite of their spina bifida and/or hydrocephalus, the necessity of During the interview with Ian I was intrigued to striking a balance between independence and know more about how he has become so getting together with people who can genuinely successful; he has obviously experienced a great identify with each other, the fact that if people deal in life and conducts himself as someone who with disabilities want to work, then they need a means business. work ethic that offers no excuses, and the need for charities like Shine to collaborate with its Ian identifies his parents as being membership effectively, all instrumental to his development come across very clearly in as increasingly he became an ... if people what Ian communicates to independent person. This attitude to life proved essential as with those around him. Ian progressed beyond the doctorʼs opinion that he would disabilities It was a pleasure to meet with Ian, and Gobi left a very die young. want to work, happy man with his new wheelchair. To read more After a combination of study at then they need about Gobiʼs experience at both State school and the GBL see page 14 and 15. disability specific Treloars a work ethic School, Ian wanted to pursue his To find out more about love for sport at university. that offers no the services GBL offer However, growing up in the please see: 1970ʼs meant that the options excuses ... that we know today were not yet available. Ian was told that in order to complete his desired course he would first have to gain a degree elsewhere due to his perceived inability to complete the physical aspects of the course. By the time he was eighteen Ian was already representing Great Britain as a wheelchair basketball player and he had his eyes set on improving his standard of living, starting with his car! With this in his sights Ian trained as an Accountant and went on to work for ASBAH until the charity moved to Peterborough. It was at this point, with no desire to move from his home in Hounslow, that Ian and two of his friends set up 9
  10. 10. SHI_Together_Issue7_AW_Layout 1 08/11/2012 14:30 Page 11 Health Bladder and Bowel Day Ensuring that children and adults with spina bifida receive the very best care for their bladder and bowel issues has long been an important part of the Shine Health Teamʼs work. I am fortunate enough to be in contact with some of the excellent clinical services who believe that continence, as well as kidney health, are the aims of bladder and bowel management for young children with spina bifida. Working closely with families, Thursday they aim for most 20th children to be September wearing regular bladder. Interestingly, increase the capacity. It is used underwear by the By Health Mr Malone informed more and more for adults, with time they complete Development us that since his good effect. It can be used in infant school. Manager centre adopted this children too, however not all Gill Yaz approach several Paediatric Urologists are happy On 20th September years ago, there is to use it as the child will have to the Life Long very little need for go into hospital every 6 months Opportunity bladder augmentation, for repeat injections. Programme welcomed Mr Pat a major operation to enlarge the Malone, Consultant Paediatric bladder. Likewise, Peristeen has The important message for Urologist at Southampton reduced the need for the ACE. parents who have children with General Hospital, to talk to spina bifida is that there should parents about modern bladder Some other centres treat all always be an active plan, not and bowel management. For babies born with spina bifida with only to preserve the kidneys but years, Mr Malone and his team medicine and intermittent also to promote continence, and have been working to improve catheterisation, stopping later if planning for this should start bladder and bowel care for everything looks to be fine. within the first months of life. children with spina bifida, These centres are also finding Hopefully with such models of inventing the ACE procedure for that there is a much lower excellent practice in many parts bowel washouts. requirement for surgery, as the of the country, continence can be bladder is much more able to fill achieved by many children, In his talk, Mr Malone spoke properly. A relaxed bladder is a without surgery. It wonʼt work for about the importance of early safe bladder; by keeping the everyone, but itʼs definitely worth assessment to check that the pressures down there is a lower pursuing. Your children will gain bladder is able to fill and empty chance of kidney damage so much confidence through urine (Urodynamics) in the first through reflux. achieving continence, the sooner months of life. If the bladder the better! function is affected, Mr Malone As well as medicine, some prescribes medicine to relax the urologists are using injections of To contact Gill Yaz please bladder, and intermittent botulinum toxin, such as Botox, T: 0208 449 0475 or catheterisation to empty the to relax the bladder muscle and E: 10
  11. 11. SHI_Together_Issue7_AW_Layout 1 08/11/2012 14:30 Page 12 Go folic Family Planning Goes Folic! Shine has formed an exciting new partnership with the Family Planning Association, which will see Go Folic! promoted in Family Planning Clinics throughout the UK. This new partnership will provide us with a unique opportunity to directly target large numbers of women of a childbearing age with the Go Folic! message before theyʼre starting to think about pregnancy. Go Folic! literature will be available to all women attending the 3,000 with Norfolk and Waveney Primary Care Trust Family Planning Clinics and 2,000 specialist to develop a Go Folic! pharmacy campaign for family planning GP surgeries in the UK. the region. During the course of the 2 month campaign, pharmacists reported that We are very fortunate to have been given displaying our information had prompted more such a great opportunity to promote Go Folic! women to ask questions about healthy on a national level and in such a targeted way. pregnancy and taking folic acid, with some As a result many more women will be made pharmacies noticing a definite increase in their aware of the importance of taking folic acid over the counter sales of the supplement. This before they plan a pregnancy, so that was exactly the result that we were when the time comes the concept of hoping for. However, most taking folic acid wonʼt be a new one. significantly, we discovered from the Chief Pharmacist that In addition to promoting the prescriptions for folic acid in the campaign in their clinics, our friends area rose by a whopping 700 at the FPA are also promoting folic prescriptions during the acid awareness on their website, quarter of the campaign! and have also ensured that Go Folic! This has given us a literature (along with some specially tremendous boost, as it created Go Folic! branded folic acid just goes to show that we tablets) form an integral part of their are getting things right. We new fertility kits, which are available arenʼt just increasing awareness, to purchase from their website weʼre changing behaviour too. We hope that the trust will become the first to adopt Go Partnerships with other Folic! on an on-going basis organisations have already proved and hope to roll out the very successful for Go Folic! campaign to other PCTs in Earlier in the year we partnered the near future. Thank you all for your continued support. Keep up the great work tweeting and sharing! 11
  12. 12. SHI_Together_Issue7_AW_Layout 1 08/11/2012 14:31 Page 13 Christmas appeal Can you Make a Gift to S My name is Aidan and my family have been members of Shine for At the time, everyone a very long time. Iʼve been raising thought my Dad was money for them and telling going to die, but he people how brilliant they are didn’t – luckily for all since I was six years old – Iʼm 11 of us, he’s still here now. with us. Iʼd like to tell you why I do this, because I hope it might encourage you to send in a donation this Christmas, to enable Shine to keep helping families like mine. They really need our support. When I was five, Dad suffered lots of severe strokes and developed hydrocephalus. He was families when they go through seriously ill and had to go hard times. into intensive care after an emergency operation Once, I sent Shine £10 from to insert a shunt from his selling my homemade brain into his abdomen. marmalade and coconut ice. Dad was a Parish Priest They always send me a nice and although he made a stressed and anxious, and itʼs thank you letter telling me how miraculous recovery, he never really helpful that I can tell people every pound is important. recovered enough to stay at work about his hydrocephalus – I can and so he had to retire. Mum had only do this, because our Shine My family doesnʼt need any help to give up work too. We ended up SDW had explained it to me so from Shine at the moment, but moving house, so I had to leave clearly when it first happened. Mum says you never know what all my friends from Cubs and my She gave me and my Sister the future holds. By making a old school behind. It was horrible ʻBenny Bearʼ books to learn donation today, we can make and changed our lives forever. about what had happened to sure that every little boy or girl, or Dad, so that we werenʼt so Mum or Dad living with spina One of Shineʼs Support & scared of it all. bifida and hydrocephalus will Development Workers (SDWs) always have somewhere to turn came and visited us lots, so we Mum says things like this cost a to when things get tough. could ask questions and they lot to produce, so Iʼm always The best way that you can could help us all understand why keen to help raise money for help Shine to support other Dad behaves a bit differently Shine whenever I can, so that families like mine is to send a now. Sometimes Dad gets they can keep helping other donation. Mum said Shine was like a guardian angel, not just for Dad but for all of us. 12
  13. 13. SHI_Together_Issue7_AW_Layout 1 08/11/2012 14:31 Page 14 Christmas appealo Shine this Christmas? Your donations will help Shine to continue providing the support and advice which is so desperately needed by other families like mine. For example, as part of its Lifelong Opportunities Programme, Shine organises an annual residential Family Opportunity Weekend. Please consider making a donation this Christmas, so that Shine can keep helping people like my Dad and me. If you canʼt make a donation instead? You could bake some today, could you do something cakes and sell them to your to raise money for Shine friends and family, or perhaps you know someone who would like to run the London Whether you want to give Marathon for Shine! regularly, or if you’d rather make a donation right now, The people in the Fundraising all you need to do is fill in Team are always really friendly the form that’s with this and happy to help – so you promise to send you a nice magazine and send it all can always give them a call on thank you letter if you are able back in the envelope 01733 421351 to talk about to make a donation today. provided. your ideas. I hope you all have a lovely Christmas and I Love from If you wish to make a regular donation please complete the form below and return it to: Monica Evans, Shine, 42 Park Road, Peterborough PE1 2UQ Instruction to your bank or building society to pay Direct Debit I would like to give Shine a gift of £_______________ Monthly/Quarterly/Annually starting ___ / ___ / 20___ Name: Address: Postcode: Please fill in the form and send to: Service user number To: The Manager Bank/building society 9 7 3 1 0 6 Address: Reference S h i n e A p p e a l 2 0 1 2 Postcode: Instruction to your bank or building society Please pay Shine Direct Debits from the account detailed in this instruction subject to the safefguards assured by the Direct Debit Guarantee.I understand that this instruction may remain with Shine and, if so, details will be passed electronically to my bank/building society. Name(s) of account holder(s): Signature(s) Branch sort code Bank/building society account number Date: Bank and building societies may note accept Direct Debit instruction for some types of account DD | 5 13
  14. 14. SHI_Together_Issue7_AW_Layout 1 08/11/2012 14:31 Page 15 Gobiʼs gossip Following a fantastic summer of Olympic and of activities that have taken place during 2012! You Paralympic action, I hope that everyone still has might find Christmas has been and gone by the the feel good factor that London 2012 brought us time you finish reading this, as once again thereʼs all as we head towards the festive period! Okay I plenty to get through! know itʼs only November, but before we know it Christmas will be here and Auld Lang Syne will be Since the last issue of Together, Iʼve been involved ringing out from households across the nation, as in all sorts of exciting things. Following on from we say farewell to 2012 and we welcome 2013! being an Olympic Torchbearer in Stevenage, Iʼve been the Paralympic Flame Ambassador for Talking of the New Year, it really is scary how Hertfordshire, taken part in the Welsh 4 Nations quickly time is passing. Even scarier is the number Para-Badminton Championships, completed a 5K 14
  15. 15. SHI_Together_Issue7_AW_Layout 1 08/11/2012 14:31 Page 16 Gobiʼs gossip Fun Run at the Great Eastern Run with Darren and Mixed Doubles, and Silver in the Singles, ʻThe Powerʼ Fower, visited more schools, and even narrowly losing to my on-court rival and friend, had time to fit in getting a new wheelchair! Martin Rooke. It was disappointing to lose out again, but Iʼll beat him soon enough! A special I had the very good fortune of being able to attend thanks to Kate Thomas from Shine Cymru, who a number of Olympic and Paralympic events, came along to support me at the Welsh Institute of meeting some past and present stars, such as Sport in Cardiff. David Clarke (Captain of the Paralympic GB 5- Aside football team), Louise Hunt (Wheelchair Mid-October saw me take part in The Great Tennis), 3 time Olympic medallist Kriss Akabusi Eastern Run after my Shine buddy and Media and one of the greatest Paralympians of all time, Development Officer, Darren Fower threw down Tanni Grey-Thompson. I also grabbed the the challenge of getting me to take part. Not opportunity to rub shoulders with a number of other being one to refuse a (reasonable) challenge, I celebrities including Prime Minister David accepted and set about entering the 5K Fun Run, Cameron, Mayor of London Boris Johnson, and with the additional challenge of raising £1000, pop star Tinchy Stryder. just to make it interesting! It was a new experience for me and Iʼm definitely a long way You may remember, before the off doing the London Marathon. Olympics started I was making a number of school visits. These visits are great fun and itʼs lovely With all of this excitement and to see the children showing so activity, I still found time for some much support for Shine. important retail therapy when I Alexandra Infants School, in visited GBL Wheelchair Services Kingston-Upon-Thames raised in Feltham, London. Having been money for Shine a short time needing a new every-day ago and since then have been wheelchair for some time, I met getting involved in more with Managing Director of GBL, fundraising. One of our younger Ian Laker. Ian, who himself has members, Jack Keleman attends spina bifida, assisted me in the school, and in September he selecting a new wheelchair. After Above: Gobi with the Rio took part in a Sponsored Bounce, test driving a number of Dancers, part of the the objective being to bounce as wheelchairs at GBLʼs showroom, parade going many times as possible on a I selected my new mean through St Albans bouncy castle. Itʼs fair to say machine – a Top End Crossfire! I Left: Gobi with there was a great deal of jumping can now say goodbye to the Tinchy Stryder, around, with the school raising a regular and rather painful back holding the fabulous total of £150 for Shine. troubles Iʼve been having as a Paralympic Well done to the school for their result of my old chair. It just goes torch together. efforts and also to Sarah to show how important it is to Keleman for plugging Shine at have the right wheelchair. For every opportunity. Donʼt forget if you want to more information on Ian and GBL see the feature organise any fundraising events get in touch with in this edition on Page 8. Hannah or Andrew in the Shine Fundraising team. Who knows, you may even get a cheeky little visit And there you have it. The last few months of from your Membership Development Officer! E. activities condensed into a nutshell, albeit a rather or large one! Once again, time and space have beaten me and I have to wrap up my column for another edition. After a hectic and enjoyable 2012, September also saw the start of the new Para- I hope that 2013 will be even better. Badminton Season and, after one of my best performances, I came away with Gold in the Menʼs See you in the New Year! 15
  16. 16. SHI_Together_Issue7_AW_Layout 1 08/11/2012 14:32 Page 17 Fundraising news Fundraising begins at 40! I celebrated my 40th birthday this year by keeping up with her twin sister, Lucy and her challenging myself and ten friends and family older brother, Sam. Shine provided not only members to the Leicester Half Marathon on vital information about hydrocephalus and a 14th October. We raised £2000 for Shine! place to turn to with problems, but also made us aware that we are not alone. The new name Its 9 years since we found that our daughter, and image at Shine have brought everything Ella, had a spinal cord tumour and to life! hydrocephalus. I would never have believed that 9 years later, Ella would be running around, All the best, Anne Thomas Virgin Active London Triathlon The weekend of 22nd and distances, in the fastest time So thank you to everyone who 23rd of September saw an possible. competed, supported, or awesome team of Shine donated to the Team. fundraisers galvanized for the There were a number of worldʼs largest triathlon event individual competitors, as well Charlie at the Excel Centre and Royal as teams of three (each still Victoria Docks, London. choosing to do an individual smiling discipline) competing to raise after the Triathlons are definitely not for money for Shine during the event the faint hearted, with those weekend. competing taking on particularly intense swimming, So far, Team Shine have cycling and running raised over £11,000 and there challenges, over a range of is still more money coming in! 16
  17. 17. SHI_Together_Issue7_AW_Layout 1 08/11/2012 14:32 Page 18 Letters to the editor Dear Tom, Dear Editor, In 1997, aged 18, I was diagnosed with I was born in 1979 congenital hydrocephalus. Over the with congenital next two years I underwent five hydrocephalus and had operations and three shunt systems, a shunt fitted at Great but I was still in pain. Ormond Street Hospital. I would like to fundraise Having late onset hydrocephalus was difficult. I went from for Shine, as I find being a confident and active person, to spending most of my them very inspiring, and late teens in and out of hospital. Faced with constant pain I hope to take part in the and being unable to see my friends often, I would sometimes 2014 London Marathon. naturally feel down. I believe that you must I realised that I had to look to the future, to what I could do in always live life to the good health, and keep that goal as motivation for a speedy fullest. If you are recovery. Understanding the need to distract myself from thinking about having pain, I took up black and white photography and poetry an EVT procedure, writing. whatever your age, I recommend that you go That was 15 years ago and, over time, I have learned that I for it. It changed my life can do whatever I set my mind to. Having two tubes in my and helped me to head (Torkildsen procedure) doesnʼt stop me. I have climbed achieve my dreams. I mountains and, two years ago, I completed an Ironman for can now see my little then ASBAH. No matter how bad things become, they will girl grow and thatʼs always improve and having a positive mind set and great, amazing! loving support are very powerful tools. Kind Regards, Yours sincerely, Johnny Jodie Guest Bon voyage, Simon! Simon Tubb was born with spina bifida and is one of our latest fundraisers to have been bitten by the triathlon bug. Four years ago, struggling with his weight, Simon decided to sell his PlayStation, buy a bike ʻand the restʼ he says ʻis historyʼ. Now 7 stone lighter, Simon is training for the London to Paris Bike Ride in April 2013 to raise money for Shine, and he is also competing in the Slateman Triathlon in May! Having been told that it was unlikely that he would even be able to run, Simon has disproved this diagnosis. Good luck Simon! Follow Simon through his training and preparation at: 17
  18. 18. SHI_Together_Issue7_AW_Layout 1 08/11/2012 14:32 Page 19 Welcome toTogether SAMC Meeting August 2012 The SAMC met for their third meeting of 2012 on opened and everyone welcomed by Shine Health Saturday 18th August at Shine Head Office, Development Manager, Gill Yaz. Mr Patrick welcoming CEO, Jackie Bland, Development Malone, Consultant Urologist, at Southampton Manager, David Isom, and Health Development General Hospital, gave one of the best Officer, Robin Barnatt. presentations Iʼve heard and had everyone right in the palm of his hand with his every word as he Developments explained everything. Shine has drafted a description and person specification for the role of members Mr Malone then took time to answer many wishing to be SAMC representatives, and questions from the parents, which he managed used this to consult with the council with ease. Janice Bradley from Coloplast members present. It was agreed that any introduced the irrigation systems and again new representatives must be 18 or over to answered many questions on various issues. be considered. Pauline Gibbons, mother of Gabby, gave a great account of a parentʼs journey. It was so nice to So, as we are coming up to the next election for hear a mother talk the way Pauline did; she too the SAMC, there will be a selection process for answered many questions and could have been those interested in joining. You can find out more there all day judging by the number of people keen by reading the piece in this issue on page 6 from to hear about her experience. Shineʼs CEO, Jackie Bland. ln addition, Shineʼs Angie Coster, who is now SAMC also discussed plans for an event for adults Project Coordinator for the Silver Dreams Project to be held in July 2013. This will be an activity was in attendance. David lsom and Shine packed day event to be held called ʻRise and volunteer and Trustee, Lorraine Watson, also Shineʼ at Stoke Mandeville, with the option of talked to some of the parents and those who were staying overnight. You can get full details on how attending a Shine event for the first time. They all to attend this event in this issue; we will be looking said that by meeting other parents and sharing at local and accessible hotels in case some ideas the day was well worth attending. members would like to stay. We will also be looking into transport options. I will keep everyone Thank you to everyone who made the event updated in the next issue. possible. Events I would like to thank Lee Fomeraill, General Paul Manning attended the Family Fun Day in Manager at Riverside Volvo of Hull, who provided Cornwall on Sunday 7 October. According to Paul: me with petrol for my visit to Southampton for the ʻIt was a great event. Seeing all the members and B&B Day. As a charity these gestures make such a their siblings enjoying the whole day was a great difference and help to save on costs. sight.ʼ Amar Dugal attended Understanding and Managing Challenging Behaviour (Associated with Hydrocephalus) on Thursday 4 October at Shine Head Office. I attended the Shine B&B Day in Get in Touch Southampton on Thursday 20 September (see Finally thanks to the members who have got below). It is nice that we can get to these events in touch and I hope I have answered all your and meet the members/parents/carers and questions. Please keep those emails coming, grandparents involved. as it is your SAMC, for you, the members. B&B Day Southampton Michael Bergin, Communications Officer I attended this event and I have to say it was one SAMC. E: of the best that l have ever been to. The event was 18
  19. 19. SHI_Together_Issue7_AW_Layout 1 08/11/2012 14:32 Page 20 Events Family Workshop North & West Yorkshire ASBAHs Family Workshop Hydrocephalus/Spina Bifida - What is it all about? took place on Saturday 13th October 2012, in Bradford. Families with a child with hydrocephalus and/or spina bifida, up to the age of eleven, ‘It was priceless for me were invited to attend. The and for my children as workshop was funded by grants well to participate from Jimi Heselden Fund, that afternoon.’ known locally as Jimbos Fund, and The Freemasons of Yorkshire West Riding. Fifteen families attended and parents took part in discussions with Mr Ramnath Subramaniam, Consultant Paediatric Urologist, and Mr John Goodden, Consultant Neurosurgeon (both from Leeds Childrens Hospital) and Joanne Grenfell, Shine Education Adviser. ‘Mummy that was an ace day out!’ Shine Begins at 50! Shine has been chosen to manage an could affect this age group. We will also exciting new project involving people with create opportunities for people to share spina bifida and/or hydrocephalus who are practical tips and interests. aged 50 plus. The Project is one of a number created nationally which are being funded by Project activities will include a newsletter the BIG Lottery in conjunction with The Daily written by members, online discussion Mail as part of their Silver Dreams groups, a befriending service, a new type of Programme. volunteering scheme, and a national event towards the end of 2013 to celebrate the The aim of the project is to reach out to our achievements and explore the issues facing members in this age group so that they can people as they get older with these create opportunities to share their conditions. experiences and make connections with each other. Previously there has been little attention To register your interest in the project please given to the issues faced by people with spina contact Angie Coster, Project Coordinator. bifida and hydrocephalus as they get older. T: 01308 426372 or E: The idea is to gather information about getting or Lynn Hart, Project Administrative Assistant older and living with the conditions; this could T: 01733 421321 be about health-related problems, caring E: responsibilities, bereavement, financial concerns, mobility issues – anything that We look forward to hearing from you! 19
  20. 20. SHI_Together_Issue7_AW_Layout 1 08/11/2012 14:32 Page 21 Focus on Shine Cymru Latest Shine Cymru news round-up Special educational needs – consultation events a first Spotlight on business for Shine Cymru South Wales member, The Welsh Governments proposals for reform of the provision Veronika Bosbury, runs an of special educational needs prompted Shine Cymru to link on-line sports and forces with SNAP Cymru to deliver a series of consultation leisurewear company events for parents/carers. As a result, Shine submitted a response to the consultation to Shine members will ensure our members views were well and truly heard before receive a 10% discount on any decisions were made. purchases - just mention youʼre a member when • For further information or a copy of the response, you place your order. contact Sian Prince, Educational Lead for Wales, at Follow ʻVerottiʼ on or call our first point of contact on 01733 555988 Handmade G ifts Shine Cymru’s Ambassador Cooking For Sale programme fever The WCVA-funded reaches Volunteer project in Wales Wales continues to go Weʼve seen from strength to strength. Many members Danny Mills across Wales are gaining experience and success in Aprons (inclu ding Rolling Pi Small Bags £1 n and Woode support in their volunteering roles as Celebrity Bottle Bags £1 .50 .20 n Spoon) £5.50 fundraisers and events supporters for Shine Master Cymru. Chef, Please contac Mobile: 0772 t Helen Aitken 5594622 for more inform ation: Email: helle1 Rebecca .uk 2013 will see the introduction of an exciting Morrisʼ All proceeds to Shine new opportunity for Shine Cymru members, Cook Thank you fo r helping us su by spina bifid pport families their families or friends to sign up and train to Book with a and hydroc ephalus affected become Ambassadors for Shine Cymru. recipes Shine, 42 Par k Road P t from various If you are interested in finding out celebrities, including Ainsley Harriott, more, then please get in touch Tanni Grey-Thompson, Rick Stein and with Sally King-Sheard (Volunteer Beth Tweddle, and now a group of Development Officer) on enthusiastic volunteers in North Wales are busy making aprons and cookery sets or 01745 889457 / 07896 912340. to raise money for Shine. 20
  21. 21. SHI_Together_Issue7_AW_Layout 1 08/11/2012 14:32 Page 22 Events for WalesAutumn/Winter 2012 Welsh stars of the future! Both Harry Thomas from Pembrokeshire and Dan May from South East Wales were recently chosen to play for the Wales Under 15 basketball team at the National Junior Basketball Championships at Stoke Manderville. Special congratulations to Dan, who was team captain. Well done, boys! Special congratulations to Dan, who was team Captain. Well done, boys! Christmas and New Year at Shine Cymru Shine Cymru are looking forward to the Christmas season and are holding several events that you could get involved with. • West Wales are holding their Christmas meal on Thursday 6 December 2012 at 12pm in Aberystwyth • South Wales are holding their Christmas get-together on Sunday 9 December 2012 at The Three Horse Shoes Country Inn, Moulton, Vale of Glamorgan, CF62 3AB (approximately 5 miles from Culver House Cross, Cardiff) from 4pm. • North Wales are holding a Childrenʼs New Yearʼs Party on Sunday 13 January 2013 at Craig-y-Don Community Centre in Llandudno from 2-4pm. If you would like to book your place on any of these events please see the events listing on page 27 for the relevant contact details. 21
  22. 22. SHI_Together_Issue7_AW_Layout 1 08/11/2012 14:32 Page 23 Benefits explained Reform of Disability Living Allowance Disability Living Allowance for adults is being component (similar to DLA mobility). replaced. The government has announced that However, unlike DLA, PIP will have only two from next year, there will be no new applications for rates, a standard rate (similar to middle rate Disability Living Allowance (DLA) for adults. DLA) and an enhanced rate (similar to higher Furthermore, all existing adult claimants of DLA will rate DLA). be expected to apply for the new benefit which is called Personal Independence Payments (or PIP). The rate of PIP that you are awarded will be decided with reference to a list of activities and Q: When will this happen? descriptors – each with its own score value. You A: For new claims of PIP, people living in the pilot will need to score at least 8 points for standard areas of the North West and the North East of rate or 12 points for enhanced rate. As this new England will be able to apply from April 2013. scoring system seems to reflect the middle and If you live elsewhere in the UK higher rates for DLA, some of the you will be able to apply from obvious losers will likely be those June 2013. Disability Rights UK currently on the lower rates of Go to the home page and care and mobility. Existing claimants will be scroll down to the ʻfact expected to apply for PIP sheetsʼ section, and look for Significantly, the most prominent between October 2013 and ʻPersonal Independence change will be that in most March 2014. The benefits Paymentsʼ. These fact cases, you will be expected to office will get in touch with you sheets are very detailed and attend a face-to-face about this (in writing and by good if you already know assessment. At present we phone) in due course. your way around the have little detail about how this benefits system assessment will be conducted, Q: What about payments? but we will keep you updated. A: For existing DLA claimants, once you claim PIP, your DLA Q: Where can I get more will continue until the decision information? to award PIP is made. If you A: Other than speaking with are entitled to receive PIP, your local advice agency, you you will be transferred without can get some further information a gap. However, it is from the following trusted important to note that if you sources: fail to apply for PIP, your DLA payment will stop anyway. This is why it will be Official vital to apply once you have been given the Go to the home page and use the search function invitation to do so. Unfortunately, if the amount to locate web pages on DLA and PIP. There are you get is less on PIP than it was on DLA, you plenty of official links and resources at will not get a top-up to make up the difference. Q: What are the key differences? Shine A: In many ways, there are close similarities Go to the main Shine homepage and look for ʻhow between PIP and DLA. Like DLA, PIP will have we helpʼ and ʻwelfare benefitsʼ. You will see a two components: a ʻDaily livingʼ component downloadable fact sheet for PIP on the DLA (similar to DLA care); and a ʻmobilityʼ webpage 22
  23. 23. SHI_Together_Issue7_AW_Layout 1 08/11/2012 14:32 Page 24 Northern Ireland Summer Fun in Northern Ireland Although there wasnʼt much sun this summer, we certainly had lots of fun! Our younger members had two outings to the Donkey Sanctuary in Templepatrick, one in July and one in August. The little ones each rode on a donkey and dressed up in donkey costumes. The sensory room in the Sanctuary was also a great success. Our adult Members went on an outing to Belfast Activity Centre. They tried wall climbing and abseiling – definitely not for the faint hearted. They also tried archery, but we have no budding Robin Hoods We also went to see Footloose at the Waterfront. A fabulous night of entertainment and some of us met the cast! Northern Ireland contact: 23
  24. 24. SHI_Together_Issue7_AW_Layout 1 08/11/2012 14:32 Page 25 AGM AGM will Ring in Changes Shineʼs final AGM under the present from the AGM in 2013. It is never too early to constitution will be held at Shine HQ, 42 Park contact us if you think that you, or someone Road, Peterborough PE1 2UQ on 29th you know, might be interested in serving on the November beginning at 10.30am. The meeting Board in the future. Shineʼs Finance Director, will vote on a new constitution, which will allow Margaret Connor, welcomes all informal all Shine members over the age of 16 to vote enquiries. at future AGMs on key matters affecting the organisation, including who should serve on The AGM will be followed by the presentation of the Board of Directors. This change will make the 2012 Shine Awards, which recognise the organisation far more democratic and open individual achievement and outstanding up further opportunities for members (including contribution to the charity. family members and professionals) to play a role in Shineʼs development. Only individual members and Shineʼs Directors are entitled to vote at the AGM, but anyone is Alongside changes to voting rights Shine has welcome to attend, stay for lunch, and watch the undergone a governance review, which will Shine Awards being presented. If you plan to mean that Board members can only serve a attend the AGM please contact Lyn Rylance maximum of two consecutive terms. There will be new opportunities to join Shineʼs Board tel: 01733 421356. Benny’s brilliant busy summer What a busy summer I have be available to listen to very anytime! Just call Hannah on had, travelling from place to soon. T: 01733 421351 to find out place, meeting wonderful more. Benny friends and their Whilst I was out enjoying families. I watched the Tour De myself, hard work was Finally, welcome to Summer France and the Edinburgh happening all around me. A Finlay, born on 4th April 2012, Tattoo, but my visit to the nursery in Brighton had a the 400th member of the Benny Paralympics was the most Teddy Bears Picnic and one of Bear Club. My target is 600 memorable. I was fortunate their staff is now training to run members by December 2012, enough to accompany Gobi in the Brighton Marathon for can you help? Ask your friends, carrying the Paralympic Torch. Shine! Hammerwood Cricket schools and clubs. There are Clubʼs ʻveteranʼ players had a further details about how to join I love to visit schools, where I charity match and raised nearly at can talk to children who have £150.00! Thank you everyone, hydrocephalus, just like me. these fund raising activities are So, into Autumn we go, with My Benny Bear books have so important. I was involved in lots of new ideas now been re-printed and are many Wear Yellow and Shine and enthusiasm. also available to download for events for Spina Bifida and Thank you all for just £1.00 each. These books Hydrocephalus Awareness your support and I are fantastic in helping all Week, October 22nd–October look forward to children to understand 28th. Donʼt worry if you missed catching up with hydrocephalus. I have also these events, you can have a more news soon. recorded the stories as audio Wear Yellow and Shine day or books, so hopefully these will a Benny Bear Birthday Be brilliant! Benny 24
  25. 25. SHI_Together_Issue7_AW_Layout 1 09/11/2012 10:17 Page 26 Events Shine’s Lifelong Opportunities Programme of National Events Shine is continuing to develop ‘We its Lifelong Opportunities Please contact either Dave Isom look forward Programme [LLOP], including E: events such as: T: 01733 555988 or Joan Pheasant to hearing E: your • Family Opportunity T: 01332 556767. ideas.’ Weekend • Bowel and Bladder Day • Teenage Residential Event • Grandparents Day Here at Shine we are keen to develop further LLOP events so • Hydrocephalus the Hidden we are interested to know what type of events members would Disability benefit from in the future, for example event themes could be • Family Fun Day related to education, independent living, wheelchair services, • Adult Lifestyle Event etc. • Understanding and Managing Challenging If you have ideas for future national events we would love to Behaviour associated with hear from you and would also like to hear about possible Hydrocephalus. suitable accessible venues local to you. 25
  26. 26. SHI_Together_Issue7_AW_Layout 1 09/11/2012 10:30 Page 27 Events 26