SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:01 Page 2           Grand Prize Draw 2013                             Awa...
SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:01 Page 3                                                                ...
SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:01 Page 4                                                                ...
SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:01 Page 5       News         Obituary                                    ...
SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:01 Page 6                                                                ...
? 46 ,7 260                                                                                                               ...
(2 .3(- )**5 (0*                                                                                                          ...
2.398*7 !4 (-*(0 8-*                                                                                                      ...
2.398*7                                                                                                                   ...
SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:01 Page 7       News         Good news for         members who have      ...
SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:01 Page 8                                                                ...
SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:02 Page 9       AGM  Award Winners           Honours and changes         ...
SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:03 Page 10                                                               ...
SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:03 Page 11       Go Folic!       Go Folic!       This year got off to a f...
SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:03 Page 12                                                               ...
SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:03 Page 13       Feature           Making a song and           dance abou...
SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:03 Page 14                                                               ...
SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:03 Page 15       Gobiʼs gossip       A big ʻHelloʼ and ʻHappy New Yearʼ t...
SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:03 Page 16                                                               ...
SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:03 Page 17       Fundraising news                                        ...
SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:03 Page 18                                                               ...
SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:03 Page 19       News       Shine raises £4000       through Bullens     ...
SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:03 Page 20                                                               ...
SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:04 Page 21       New SAMC       Shine’s new Adult       Members Council  ...
Together - Issue 8
Together - Issue 8
Together - Issue 8
Together - Issue 8
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Together - Issue 8

  1. 1. SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:01 Page 2 Grand Prize Draw 2013 Award Winners Latest News Issue 8 Amy’s song Smile set to Shine New SAMC announced
  2. 2. SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:01 Page 3 RATED DISCREET BY 1 96% “This has changed my life completely” “This has changed my life completely” Dan, SpeediCath® Compact Male user, UK For father-of-two Dan, SpeediCath Compact Male is the difference between yes and no When Dan’s multiple sclerosis began leaving him with little control over his bladder, Dan’s life grew more and more constrained. More often than not he would avoid leaving the house for fear of not being near a toilet. But intermittent self-catheterisation started to give him new confidence and View video now, with the extra discretion and convenience provided by SpeediCath Compact Male, ‘the Dan that says yes’ is well and truly back. See Dan’s full story at 1 Results from SpeediCath Compact Male pre-evaluation, Nov. 2010 to Dec. 2010. To order, call Freephone 0800 220 622 (quote SCCM 1 ) Coloplast Limited First Floor, Nene Hall Peterborough Business Park Coloplast develops products and services that make life easier for people with very personal and private medical conditions. Working closely with the people Peterborough who use our products, we create solutions that are sensitive to their special needs. We call this intimate healthcare. Our business includes ostomy care, PE2 6FX urology and continence care and wound and skin care. We operate globally and employ more than 7,000 people. Tel: 01733 392000 The Coloplast logo is a registered trademark of Coloplast A/S. © 2011-11 All rights reserved Coloplast A/S, 3050 Humlebæk, Denmark. Please complete and return to: Charter Healthcare, First Floor, Nene Hall, Peterborough Business Park, Peterborough PE2 6FX Title: First name: Current Catheter: size: Surname: Please send me samples of SpeediCath Compact Male The information you provide to us will be used to process your orders and for general administrative and record-keeping purposes. We will Address: only disclose your personal information (including details of the products you have purchased from us) to carefully selected third parties who provide services to us and/or if required by law. By submitting your information to us, you consent to Coloplast using your information in the manner described above and to us contacting you by email and/or telephone and/or post in order to keep you informed of Coloplast products and Town/City: Postcode: services that we think may be of interest to you. If you would prefer that we do not contact you in these ways, please let us know by ticking the appropriate box(es) below and returning the information to us. Email: Telephone: please do not contact me by telephone please do not contact me by post please do not contact me by email SCCM 11
  3. 3. SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:01 Page 4 Welcome toTogether CONTENTS A little birdie P4 P8 News Honours and changes told me… P12 Amy’s song Smile … that 2013 is going to be a bumper year! p16 Grand Prize Draw If this edition of P18 Bullens success Together magazine is a reflection of the P20 Shine’s new SAMC year to come then we are in for a great P24 Shine NI time in the Shine community. P26 SAMC news We continue to be blown away by the generosity of our fundraisers, without whom none of our work would be possible. This includes another generous Together Editor: Tom Scott cheque for £10,000 from the Royal Pigeon Racing Deputy Editor: Gail Howard Association and news of £10,000 raised through Wear Yellow and Shine events during the first All enquiries and comments to: Spina bifida and Hydrocephalus Awareness Week. Together Shine, 42 Park Road, Peterborough, PE1 2UQ In our feature interview we meet the amazing Amy Telephone: 01733 555988 Burns, who has recorded her own song and will Textphone service: 01733 421395 be fundraising for Shine over the coming weeks. The Grand Prize Draw this year is stacked full of amazing prizes, be sure to sell your ticket Please let us know if you are happy to booklet enclosed and let us know if you need receive future mailings by email as this more! saves on postage and helps the environment. We also have all the in-depth information and Email: advice from our professional staff, sharing their knowledge and expertise in the hope that you can benefit. As usual, I would encourage you to get in touch Submission dates for and let us know what you like, what you want to see more of, and to share your news and photos Summer edition with us. I look forward to hearing from you soon! • Register of interest to submit: 7th March 2013 • Final date for submissions: 10th April 2013 • Publication date: 30th April 2013 Together Editor Cover photo: Amy and Erin Burns. Photo: Tom Scott 3
  4. 4. SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:01 Page 5 News Obituary Shine staff news Professor Monica Evans and Andrew Ellis have left Shine for John Scott new ventures, Clara Gill replaces Andrew in the Marketing and Events Team. Bill Manwaring has It is with great sadness that joined the Shine Northern Ireland team as a we share the news of the Fundraiser. Katie Horn is our new Charity Shop death on 29th December Assistant based in our Chichester Shop, and 2012 of Professor John Scott. Christine Cunningham is our new Support & Development Worker for the London & South Region. Prof. Scott was one of Irelandʼs most accomplished scientists and was Professor of Biochemistry, a Senior Fellow of Trinity College, and a member of the Royal Irish Academy. He was internationally recognised, winning numerous honours including being the first non- American to be awarded the Lederle Award from the American Society of Nutritional Science. The impact of his lifetime of pioneering work in the field of folic acid, B12, and Neural Tube Defects is incalculable. Social Media Prof. Scott shared a long relationship with our We continue to go from strength to strength on our organisation. Between 1999 and 2003 ASBAH social media work here at Shine. We currently worked with Prof. Scott and Prof. John Burn have 3400 Likes on Facebook and 12600 (Newcastle University), on a large-scale Followers on Twitter. We also have thousands of research study into the genetics of neural tube views on our YouTube films. We are seeing great defects in the UK and Ireland. Over the years interaction between members, fundraisers, and he was involved in many ASBAH/Shine campaign contacts through all our online media. meetings, conferences and symposiums, To get involved please see: speaking on the issues of folic acid and in latter C Facebook: years, B12. In 2002, he was a keynote speaker M Twitter: @shineUKcharity at a reception held at the House of Commons to w YouTube: promote the benefits of folic acid and flour fortification. Prof. Scott remained a committed supporter of our work until the end, producing a report for Shine on the additional benefits of taking vitamin B12 in conjunction with folic acid to help prevent more Neural Tube Defects. Just a few months prior to his death Prof. Scott had planned to present his report at Shineʼs press conference in October 2012 and was greatly disappointed when illness prevented him from doing so. Professor Scott will be sorely missed by his If you would like to find out more please email family, friends and colleagues. Darren Fower – 4
  5. 5. SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:01 Page 6 News The Silver Dreams Team is up and running! Shineʼs Silver Dreams Project for those aged 50 that people can do from home, including a plus is now up and running. We have recruited 10 crafting group; and a national event towards the core volunteers from Shineʼs membership in this end of the year, celebrating the achievements age group who have skills in and highlighting the issues that charity governance, events ...we hope to launch a older people with spina bifida management, public speaking, couple of tele-friendship and/or hydrocephalus face. social work, campaigning, groups; a new volunteering website and social media scheme with activities We have already established a development, fundraising, that people can do from successful online support group disability awarenesss training, home, including a crafting on Facebook called In Touch crafting, and creative writing to group; and a national Over 50 with members enjoying name just a few. event towards the end of lively discussions, sharing the year... information, and supporting each Over 70 members have said they other. So far a couple of people would like to get involved with the have also told us that they would Project in some way and over the next 6 months like to try the internet and we are helping them do we hope to launch a couple of tele-friendship this as part of the Project. It is going to be an groups; a new volunteering scheme with activities exciting year! For more information contact the Project Coordinator: Angie Coster T: 01308 426372 or E: To follow us see: W: Shine Recipe Book We have been hearing from some members who To read more about the experience intracranial hypertension (IH) who project please see would like the condition to feature more in Together. This is something we are working towards as we seek to also work in partnership To order your copy for just with IIH UK in the future – for more see £12.50 (inc pp) please visit In this edition of Together we are delighted to or T: 01733 421307 announce the arrival of A Good Helping, a % -.3*%4404 40%*77*687%:%=498 ,* celebrity recipe book which has been collated IA SPONGE by Shine member, Rebecca Morris. BLACK CHERRY VICTOR WHERE TO START... SHOPPING LIST .,-81= ,6*7* 8;4 ?
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  9. 9. 2.398*7 7543,*7 7-491) 756.3, +46 +*; 2.398*7 8-*3 A SPLASH OF AMARETTOTHE 8-* 4:*3 3) 1*:* 84 6*78 @ *24:* 8-* (0*7 +642 and desserts from top celebrities including Milk, to loosen ;.6* 6(0 8963.3, 8-* (0*7 498 4384 693 03.+* 6493) 8-* *),*7 LIQUEUR STIRRED INTO (4251*8*1= Icing sugar, for dusting 55*6 3) 1*:* 84 (441 *24:* 8-* ,6*7*5644+ HES THE CHERRY CREAM ENRICRIES 8-* (-*66= /2 56*) 84 74+8 5*0 3) +41) .3 @ $-.5 8-* )491* (6*2 48-*6 7543,* 43 845 4+ 8-* 7543,*7 3) 7.8 8-* For the filling 8-* (-*66= (6*2 4:*6 43* 8-*3 )978 ;.8- .(.3, 79,6 FLAVOUR OF THE CHER sports stars, professional chefs, actors, and 150ml (5fl oz) double cream 200g (7oz) black cherry jam -*+ 6*78968*96 3) 98-46 =*67 !4 )8* 6= -7 6= -4)*7 -7 **3 (-.*:*) .(-*1.3 7867 84 9. 6= -7 ;6.88*3 8 8-* +46*+6438 4+ 8-* (91.36= 4407 3) 55*6*) 43 ;461) +46 4:*6 7533.3, 8-* ,14* 3) (966*381= -7 6*7896387 392*6497 !# ;.)* 0**3 3) :.) SERVES 8 +642 8-* 84 8-* 6.*3 6.8.7- 177.(7C +6 3) 84 756*) -.7 14:* 4+ B6*8 +46 .6 1* *6,9743 3) television personalities. 564,622*7 (438.39.3, 3(-*78*6 3.8*) +44811 8-* 8*2 6= 79554687 .3)9786= ;-.(- .7 43* 4+ A ,6=6-4)*7 (42 7955468*6 6= -7 *:*3 23= (-6.8.*7 3) ;7 8-* 5649)*78 242*387 4+ -) 8-* -43496 84 (440 ;6)*) 3 .3 -.7 (6**6 +46 -.7 7*6:.(*7 84 8-* 5
  10. 10. SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:01 Page 7 News Good news for members who have Direct payments – a current awards for Welsh Assembly member Disability Living Allowance (DLA)! speaks out in support! Shine has received many Direct payments are decide how their amount of people who queries about the introduction payments from the needs will be met, have approached him of Personal Independence local council for by whom, and at with concerns about Payments (PIP) and people who have what time. their care packages.ʼ re-assessments for members been assessed as • Independence: who have been awarded needing help from allowing for care Mark Isherwood will lifetime or indefinite awards social services, and that is flexible and introduce a private as the plan seemed to be that who would like to encourages members bill on everyone would be re- arrange and pay for independence. reforming direct assessed from 2013. their own care and payments in Wales, support services. Despite this, it seems moving from the Shine now understands that These payments are as if not many people current ʻopt-inʼ this has changed and that made directly to the in Wales, who may approach to one working-age disabled people disabled person (or to benefit from direct where individuals will with a lifetime or indefinite someone acting on payments, actually ʻopt-outʼ. DLA award will now not be their behalf), to access them. reassessed until October arrange their own Shine Cymru has 2015 at the earliest, six care package. Welsh Conservative responded to a months after the next general Direct payments offer: Member for North request for election. • Choice: allowing Wales, Mark information on this people to make Isherwood, wants to issue and will keep For further information or more of the see wider members informed of questions on welfare reform, decisions which development of the developments. For please contact your local affect their lives. direct payment further information on Support and Development • Control: If a person scheme across direct payments, Worker. receives Direct Wales. His views have contact your local Payments they can been informed by ʻthe Social Services office. John’s in the hot seat! I was pleased to represent how their contribution can in Shine at a Medtronics some way affect peopleʼs lives. conference recently as they had approached the charity I was interviewed by Paddy asking for someone to talk to Haycocks in a ʻParkinson-style their staff about the benefits of interviewʼ for fifteen minutes stay at an hotel at Heathrow, a shunt, one of the products and remarks afterwards where we were royally treated which they make. The purpose suggested that my comments and enjoyed Limousine travel is that everyone in the had been appreciated. In both ways. Not bad eh? company appreciates the return, my personal assistant value of the work they do and and I enjoyed an overnight John Richards 6
  11. 11. SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:01 Page 8 News Act now Volunteer of on PIP the Year Award A day I will never forget proposal We arrived at the Telegraph building where we were met by the Managerial Editor who provided us with a chauffeur-driven car By Shine member for an exciting two-hour sight seeing tour of the capital city, where we got to see all the sights London has to offer. Pam Stock Later we were taken to the fabulous Telegraph offices and into the theatre room for champagne and canapés – too posh for As a 54 year old female with this scouse lad! The room was filled with very distinguished spina bifida and significant people including General Lord Datton, former boss of the British mobility issues, I am very Army, Baroness Campbell, Katherine Grainger MBE, and Ian concerned about the planned MacGregor, Editor of the Sunday Telegraph, amongst others. distance reduction from 50m to 20m for the Mobility assessment Each winner was invited to the stage whilst a brief insight into of the new Personal their voluntary work was read aloud. My nerves were shattered Independence Payment (PIP) by the prospect of going on stage. Finally General Lord Datton which replaces Disability Living invited me up and I am not too clear about what I actually said, Allowance (DLA) in April this year. but I brought both my wife and daughter to tears. After the Awards we went to a very lavish buffet. My daughter Sammy This change will mean that a lot spoke to Katherine Grainger and was able to wear Katherineʼs of people with very significant gold medal! We left the Telegraph Offices feeling like royalty as difficulty in moving about will fail we had been treated like Kings and Queens. to qualify for the higher rate of Carl Eaton, Shine Member the component and so will not qualify for vehicles or other mobility aids under the Motability order to improve public You can also visit the scheme. awareness of the issues facing Department for work and disabled people, so that they Pensions (DWP) at W: It will also mean that many more can lobby effectively to have this where you will people who currently qualify for change reversed. If you would find links to the full government the Motability scheme under like to add your voice to the response to the PIP current DLA rules, will lose the protest please visit W: consultation, including the final higher rate on assessment for draft of the assessment criteria – the new benefit, and will have where you can find more there is also a link to a QA of any existing Motability vehicle or information on how you can help commonly asked questions as mobility aid removed. as an individual, and also links well as a ʻmythbusterʼ of to various letter templates you misconceptions regarding PIP. Disability representative groups can use to write to people such including Shine need the as Disability Rights UK, or your This change will mean a loss of support of their membership in local MP. support and independence for some of the most severely please do whatever you can to disabled among us, so please help before it’s too late, and do whatever you can to help before it’s too late, and the the proposals pass into law. proposals pass into law. 7
  12. 12. SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:02 Page 9 AGM Award Winners Honours and changes at Shine’s AGM Shines AGM, held on 29th November, was a historic and happy occasion, with a new constitution being voted in and deserving winners being presented with their coveted Shine Awards. Members from all over the and achieving so much in their Shine Fundraiser of the Year country came to vote on lives, selecting the winners for – Charlie Miller. Charlie has proposals which included giving the third year of Shine Awards inspired us all by taking on an all Shine members over the age was a tough challenge. Thanks incredible range of fundraising of 16 a vote at future AGMs, and to everyone who nominated a challenges this year, in rotation of the Board of Directors friend, family member or memory of her son George. which will allow more people the professional for an award – all opportunity of serving on the were very deserving Shine Young Achiever – charityʼs governing body. suggestions. Below are the Rebecca Morris, who has 2012 winners: Intracranial Hypertension was If you are a Together reader the creator and producer of A and want to check whether Shine Volunteer of the Year – Good Helping the brilliant you are a Shine member or not Lorraine Watson. Shine celebrity recipe book which is please contact Maureen director and tireless volunteer currently raising funds and Jobson on 01733 555988. Lorraine was honoured for her awareness for Shine. Anyone with spina bifida, huge contribution to the Shine members of their family, and community. Shine Professional of the carers and professionals involved Year – Dr Richard Morgan, in this area of work can now Shine Young Fundraisers of founder of the Chelsea and qualify to be full voting members the Year – Upton-By-Chester Westminster Clinic for people of Shine, but to get a vote you High School. Students at this with spina bifida and must be registered in your own amazing school raised a total hydrocephalus, was honoured right. of £4700 for Shine with their this year for his pioneering interesting and original work in providing the best for With so many people fundraising activities. people with both conditions. contributing so much to Shine, ster Dr Richard Rebecca Morris Upton-By-Che M Lorraine W atson High School Charlie Miller 8
  13. 13. SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:03 Page 10 Information New NHS arrangements need to Rosemary B atchelor include spina bifida Shine has raised concerns with of different issues which arise The first ever John and the NHS Specialised from spina bifida. Lucille van Geest Award for Commissioning Board that the outstanding contribution to specialist needs of people with Shine Chief Executive Jackie the Shine community went to spina bifida have not been Bland has been promised a Linda Corbett of Shine accounted for. meeting with NHS commissioners Surrey for her longstanding to ʻexplain why these conditions support for local associations Last year, under widespread have not been includedʼ but so far and her outstanding example changes to the NHS, a process no firm arrangements have yet of making the most of life was launched to identify been offered. whilst living with spina bifida. conditions which should be commissioned nationally and for As things stand, for now, spina And finally, the Shine Lifetime which specialised services bifida will remain a condition Contribution Award went to should be provided. Conditions where services and treatment Shineʼs former Principal such as cleft lip and palate and will be decided and Health Adviser, Rosemary traumatic spinal injury are commissioned at local level, Batchelor who retired last July after a quarter century of As things stand, for now, spina bifida will remain a service to Shineʼs members. condition where services and treatment will be decided Many of todayʼs adult Shine and commissioned at local level... members were supported by Rosemary as babies and her contribution to the world of included within specialised where new local Health and Well spina bifida and commissioning and people with Being Boards will have greater hydrocephalus both nationally these conditions can expect powers to decide what the health and internationally has been specialised services at priorities for their area will be. immense. specialised clinics or Spinal Injury This is in contrast to services for Centres. people who sustain a serious Many congratulations to all spinal injury after birth, where a our winners! However, despite repeated high level of specialist service is questions, Shine has received no available, according to nationally assurance that spina bifida has agreed specifications. been identified as requiring specialised commissioning and it Shine is continuing to develop looks increasingly likely, for adults work in this area to bring about at least, that no new specialised improvement. Feedback from arrangements will be made members, direct to Jackie Bland, available. This is despite is welcome – repeated calls for improved services for adults with spina Morgan bifida, including multi-disciplinary Linda Corbett clinics where people are treated Raising the issue with MPs will as a ʻwhole personʼ rather than also be helpful to this work. being ʻdivided upʼ into the range 9
  14. 14. SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:03 Page 11 Go Folic! Go Folic! This year got off to a flying start by up to 72%, that we are still trying when we were asked to take part in to get this simple but vital message a Radio 5Live show, reflecting on the across to women. biggest medical research successes of the last 100 years. It was amazing So, why is it so difficult? … that folic acid was included alongside Unplanned pregnancies, a lack of such discoveries as antibiotics, available information and education, organ transplants and MRI scanning, an array of conflicting information and just goes to show the online, and a lack of promotion by significance that scientists place in healthcare professionals, to name the discovery that folic acid prevents but a few. Not to mention the many NTDs. women who do know about folic acid, but still see it as an ʻoptionalʼ Shine Mum, Josephine Wilding, thing to take whilst theyʼre pregnant bravely agreed to chat live on air thatʼs ʻgood for the babyʼ, rather about the importance of taking folic Amelia and Alaina than something that is essential acid before pregnancy and During Spina Bifida before and during pregnancy, to described her two beautiful and Hydrocephalus help prevent serious consequences. daughters, Amelia and Alaina Awareness Week 2012 (pictured here during Spina Bifida As we progress, I would like to say a and Hydrocephalus Awareness massive thank you to everyone who Week 2012), the youngest of whom has spina bifida. has shown support over the past year, through Rarely do we get such exposure, and Josephine sharing your stories, distributing leaflets and proved an amazing ambassador for Go Folic! postcards, sharing posts on Facebook or retweeting (and of course not forgetting our fantastic sponsors It seems hard to believe more than 20 years after the Vitabiotics and Laneʼs Health). Every little bit helps ground-breaking Medical Research Council study and we couldnʼt do it without you. proved that folic acid helps reduce the risk of NTDs Martine Austin, Health Campaigns Officer If any other parents are interested in helping Go Folic! by sharing their story, please contact me on T: 01733 421349 E: or message me on Facebook or Twitter @martineaustin Striking the right balance Having a fall isnʼt an inevitable part of getting older, or • Tell somebody. Your GP should be able to refer you as a result of having a disability. to somebody who can help. Ask if there is a Falls Service in your area for assessment Falls are frightening, embarrassing, and can be • Try to work out if there is somewhere in particular serious. They could mean a long hospital stay, loss of you are falling, or something in particular you are independence, decreased confidence with walking or doing. Your local Occupational Therapy service will transfers, feeling safer indoors and refusing to go out. be able to help with environmental factors such as The effects are multiple. grab-rails, or just general advice in terms of things like loose rugs, uneven paving, emergency lifelines, etc. Here are some things you could do if you have a fall, • See an optician if you feel it might be related to your or feel you are more at risk. eyesight. Some people notice an increase in balance 10
  15. 15. SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:03 Page 12 Health Cerebro-Spinal Fluid By Gill Yaz, Health Development Manager When I first started working for Shine, not much was surface of the brain, where it should be absorbed. known about cerebro-spinal fluid (CSF), the fluid in the Vital chemicals fail to reach the outside of the brain, head which becomes trapped, causing hydrocephalus. and the development of some of the uppermost I was originally told that it contained a bit of salt, a bit of layers may be thinner than usual, accounting for sugar, and its main function was to cushion the brain some of the cognitive issues experienced by some during impact. How things have changed! Scientists people with spina bifida. are beginning to reveal some fascinating facts, and are working hard to find out just what CSF does. The CSF is produced in pulses, each pulse creating a little tissue that produces CSF, the choroid plexus, has a wave of pressure. Scientists have found that the high very rich blood supply, and pumps vitamins and other pressure wave from CSF coincides with the low nutrients into the CSF, which feeds the brain tissue. It pressure phase of the blood being pumped into the then collects waste chemicals and returns them to the head by arteries, and that these two waves cancel bloodstream for disposal. We know that conditions each other out to create a constant pressure. It would where CSF flow is reduced, for example normal be uncomfortable if we could feel every pulse of blood pressure hydrocephalus in which toxins build up in the entering our brain, and some scientists believe that brain, can lead to dementia. some people with hydrocephalus have CSF waves out of synch with their blood pulse. In the developing brain of unborn babies, the CSF contains growth factors which tell the brain cells to So CSF is far more important than we thought, divide and migrate to the correct areas of the brain. Dr controlling our brainʼs environment, nourishing and Jaleel Miyan, of Manchester, found that removing the cleansing it, while equalising the pressure in our CSF in rats with congenital hydrocephalus, and heads. Iʼm sometimes asked ʻwhy canʼt the surgeon putting it in rats without hydrocephalus stopped the just remove the choroid plexus to reduce the CSF, brain cells from dividing and moving to form the usual instead of diverting it with a shunt or ETV?ʼ This structured layers in the previously unaffected rats. surgery is occasionally carried out in the UK, for When he reversed the process, the cells began to people who produce excessive CSF, but rarely for divide again. Different growth factors are added to the people who have the usual quantity of fluid; we just CSF at different points in the pathway around the donʼt know what the long term effects might be. head, so the effects on brain development depend on the location where the CSF becomes blocked. In What will they discover next? Watch this space! open forms of spina bifida, CSF flows into the sac of the spina bifida lesion, instead of onto the outside E: problems when they have a new pair of glasses • Changes in your blood pressure can lead to feeling • Are you rushing and falling as a result? Unfortunately, dizzy and falling. Again, see your GP or district rushing to the toilet, and going to the toilet during the nurse if you think this might be happening. People night, can cause people to fall. A small plug in night- often notice this when standing up from sitting or light may help, but also see your GP/Continence lying down Advisor if necessary • Being overweight can have a big effect on mobility • Be aware of your footwear – slippers can sometimes and falls. cause falls • See your local Physiotherapist who can carry out an Please let me know if you would like more help assessment of your walking and discuss any regarding problems with balance and falls. Stay appropriate walking equipment that might help Safe! • Are you falling or losing consciousness? Please Emma Enfield, Shine’s Occupational Therapist speak to your GP or consultant if you need to E: 11
  16. 16. SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:03 Page 13 Feature Making a song and dance about it! Words and photos by Tom Scott Late last year I received a phone things on her mind … singing and her balance, and on longer call from a dance instructor who dancing! journeys Amy uses a wheelchair. was calling to tell me about an Mel remembers being very inspirational girl called Amy Burns. Mel explains that in the beginning cautious in the beginning, ʻIn the she wasnʼt sure how having Amy warm-up, when the children run As the director of the dance and in the class would be, ʻI remember around the room, I would follow movement workshop group, Little Amyʼs Mam calling me and asking Amy with my arms hovering Movers, Melanie Buck has met if it would be alright for Amy to around her, I didnʼt want her to get thousands of children, but, as come to Little Movers, and to be hurt. But now she is fine, and if she she rightly says, ʻThere is falls she gets back up and no one quite like Amy.ʼ In the coming weeks carries on with the warm up, its not a bother to her.ʼ Despite the New Year Amy will be recording snow, I made the visit to Gateshead to meet with a song in a This protectiveness is something Amyʼs Mum, Amy, her Mum Kate, professional studio Kate, identifies with, ʻAmy Melanie, and Louise from Gateshead County and it is a song that wasfirst 12 monthsand for the our first child we were Council at Amyʼs school, very much reflects her just scared! I think most St. Josephʼs RC Primary School. wonderful personality. parents feel something like this, but with Amyʼs spina bifida we were extra Amy was born with spina bifida honest I didnʼt know anything cautious.ʼ The familyʼs first contact and has overcome many difficult about spina bifida. But, after we with Shine came around this time experiences including operations spoke about it, we decided to see when Amy was having kidney to close over her how it went and its been amazing.ʼ problems at 14 months, Kate said, myelomeningocele, a cyst This isnʼt to say that there werenʼt ʻOur worker was great in helping removal, and the ACE procedure. concerns. Although Amy has a us get the right care for Amy.ʼ However, in the face of these high level of mobility there are still challenges Amy has only two instances where she struggles with As Amy grew it was clear that her 12
  17. 17. SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:03 Page 14 Feature character was going to be the overriding factor in how she coped with her spina bifida. Parents, Kate and Michael, recognised this and are fully behind anything Amy wants to try. Amy may only be 7 but she has already taken part in horse riding, gymnastics, tennis, and trampolining. However, it is singing and dancing that has really captured her imagination. In the coming weeks Amy will be recording a song in a professional studio and it is a song that very much reflects her wonderful personality. As a result of the special relationship Amy has with her dance group, her class mates were asked to write down words that describe their friend. Unsurprisingly the list included words such as love, strong, proud, and happy. The team at Little Movers then turned the selection into the song Smile and Amy has used her vocal talent to bring the project to life. This song project, and indeed the given every opportunity to story of Amyʼs life so far, is very discover who she is according to who has been through much one of support leading to the enthusiasm that exudes from everything with Amy … and I triumph. Amyʼs family are always her unique personality. Amy is a mean everything! From hospital there for her, including younger girl who isnʼt phased by her appointments to bowel sister Erin, with whom Amy is condition and seizes life without washouts, Little Winnie has been very close. The Little Movers even thinking about it; it this facet there with Amy, her comfort group have been there as she which lies behind her infectious during the most testing times. has developed into a confident smile and draws you to her. young performer. In addition to Iʼm sure Little Winnie will be this, Amyʼs school, under the very The time with Amy and those there with Amy over the coming progressive support of Head close to her was a real privilege, months as she promotes the Teacher Mr Hattam, have and I couldnʼt end this article sales of the her new song to accommodated her in every way without acknowledging Amyʼs raise money for Shine – maybe they can within the constraints of closest friend, Little Winnie. Little she can meet Benny and share a system which makes Special Winnie is a pink Winne-the-Pooh some stories too! Needs support increasingly difficult to access. To get your copy of Smile please call T: 01733 421307 or visit the Shine eBay shop here The concern of everyone W: involved here is that Amy is 13
  18. 18. SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:03 Page 15 Gobiʼs gossip A big ʻHelloʼ and ʻHappy New Yearʼ to you all in flooding in even after the event. A massive ʻThank what I hope will be another great year for everyone you!ʼ to those who contributed through text, cash or connected with Shine. online donations … bring on PGER 2013! After the GER (Gobiʼs Exhilarating Roll!) came a With 2012 being my first full calendar year as trip across the Irish Sea to Northern Ireland where, Membership Development Officer, it was both an as well as the 4 Nations Championships in Lisburn, exciting and hectic year – with a steep learning I spent some time with Shine NI members. curve for me in the process. But itʼs been a great experience and Iʼm already looking forward to To start my trip I met Karen Tilson, whoʼs doing 2013 with great anticipation. some challenges of her own and fundraising for Shine in the process. A coffee morning followed However, before I look forward to the year ahead, the next day in Lisburn with Shine staff as well as letʼs take a quick look back at how 2012 ended. members Donna and Ryan Green. Then, As I mentioned in the last edition of Together, accompanied by my Mum, Esther, I headed off to Darren ʻThe Powerʼ Fower and I took part in the Derry to meet more members at the Brunswick Perkins Great Eastern Run. When I last wrote, the Moviebowl. amount raised was unknown, but Iʼm pleased to say we reached a grand total of £1019 – exceeding Over 30 people got together for ten-pin bowling and, our £1000 target. It was great to see donations after dinner, many stayed to socialise further with a 14
  19. 19. SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:03 Page 16 Gobiʼs gossip Valley Park, Stevenage. When asked if Iʼd be up for trying it, my mind was saying ʻNoʼ, but somehow my mouth didnʼt engage my brain and said ʻYes!ʼ Hmmm! Having never done anything like this, itʼs fair to say I was a little apprehensive. Iʼm not really one for heights and dangling from the side of an abseiling wall on a winterʼs day, so I was definitely out of my comfort zone. Still, Iʼm alive and well and writing once again! few games of pool. I also had the Nothing like doing a With all the excitement of the pleasure of bit of wheelchair exploits of 2012, I did meeting some abseiling on the however comeback down to coaches and UK’s steepest earth with a bump in players from the Wheelchair accessible December. As much as North West Eagles abseiling wall! things were going well for me, a few health issues Wheelchair arose, and troubles with my Mitrofanoff soon Basketball Team. So hereʼs a big shout out to Keiran reminded me that I am still human. Difficulties with Doherty, Elaine Brolly, Conor McGrotty, Perpetua this resulted in me requiring a Mitrofanoffscopy OʼDriscoll, Steve McCrudden, and also to the Gillon under general anaesthetic, so not an ideal end Family, particularly Diane and her daughter Chloe, to the year. It could well lead to an interesting who completely wiped the floor with me on the and tough year – if thereʼs a Challenge Gobi that basketball machine! Needless to say, Iʼm seeking Iʼll need to overcome in 2013, then this is right revenge so have a bit of business to sort out there! up there! It was an absolute pleasure to meet so many Despite the hiccup, one of the main focal points for members and I should give a special mention and 2013 will be making the ʻRise and Shineʼ Adult thanks to Support and Development Worker, Sandra Members event at Stoke Mandeville in July a real Campbell who arranged the evening and gave my success. With a number of exhibitors already Mum and myself a mini tour of Derry City Centre. confirmed, there should be something for Both Mum and I were made to feel very welcome everyone. However, there is lots of organising to throughout the stay so thank you Shine NI. do and Iʼll be working hard to make it a great experience for all, ensuring as many members as Upon returning to England, normal service possible can come and have a thoroughly resumed as everyone at Shine HQ started to gear enjoyable and memorable time. up for Christmas, however I still managed to squeeze in a final challenge for the year. If you are planning on attending, please donʼt forget With all of the events pre and post London 2012, to get your applications in, especially if youʼre my Challenge Gobi events had been on hold. staying overnight as onsite accommodation is However I restarted the challenges with something limited. Iʼm hoping itʼll be an event to remember! nice and simple to ease myself back into it. Nothing So here we are – the end of another column entry like doing a bit of wheelchair abseiling on the UKʼs done and out of space! But as always, if you want to steepest Wheelchair accessible abseiling wall! keep up to date with the development of the Shine membership on a regular basis, follow me on I was given the opportunity to be a guinea pig at Facebook, and on Twitter with @Gobi_r. See you all the So Challenging Ropes Centre at Fairlandʼs soon! 15
  20. 20. SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:03 Page 17 Fundraising news Christmas Appeal The first Shine Christmas Appeal We would like to thank all those to you, our members, saw a very who gave and we are already generous contingent donate over looking forward to next yearʼs £800 during the festive period! appeal. Grand Prize Draw The MUST HAVE ticket of 2013 is definitely the one for our amazing Grand Prize Draw. In our Top three prizes 3rd year we are aiming to make this the most successful draw yet! £1500 CASH Please find tickets FOR £1 EACH included with Apple iPad2 (16GB/WIFI) Together and sell them to your friends, £500 NEXT Vouchers neighbours, and colleagues (don’t forget to buy some for yourself too!). There are fantastic You could also win... prizes just waiting to be won. A family RETURN ticket for 2 adults 2 The beautiful Sands children on Eurostar to Paris, Lille or Brussels Resort, Cornwall A weekend stay for 2 adults and up to 3 children (under 14) including breakfast and dinner at the beautiful Sands Resort, Cornwall A relaxing stay for two at Whittlebury Hall, Northamptonshire for 1 night BB including Leisure/Spa facilities 18 holes for four on the Championship Course at Forest Pines Golf and Country Club in North Lincolnshire Two adult tickets to any of the Battle Proms venues in 2013 Hitachi Projector CPX4 suitable for home or TICKETS ARE £1 EACH – fill in the details of office use the person buying on one half and return to: Clara Gill, 42 Park Rd, Peterborough PE1 2UQ. The draw is to be held on March 30th 2013. If you need to order more tickets please call Don’t delay, make your Easter the best ever T: 01733 421307. and get your tickets now! 16
  21. 21. SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:03 Page 18 Fundraising News Community Matters Scheme Shine have recently been communities that rely on opportunity, it also gives you donated the fantastic amount charitable organisations, or the chance to raise awareness of £255 by Hall Green those who nominate a charity of spina bifida and Waitrose after being nominated they have a personal hydrocephalus in your local by a local member to benefit connection to. community! from their branch Community Matters Scheme. So if you live near, or regularly If you would like to discuss shop in a Waitrose, John how to nominate Shine for This is a brilliant fundraising Lewis, Asda or any other local one of these schemes, or initiative that many large chain store that may offer a similar have any other similar ideas supermarkets are now starting charitable incentive, please that you think would help, to introduce in order to give donʼt hesitate to nominate please contact the Marketing something back to the Shine, as not only does it and Events team for further members of their local provide a fundraising details – T: 01733 421351 Awareness Week 2012 Last October brought us the first many of you, and raised nearly taking part, and we can look Spina Bifida and Hydrocephalus £10,000 this year from separate forward to going from strength to Awareness Week, and with it events up and down England, strength with ʻWear Yellow and Shineʼs very first national Wear Wales, and Northern Ireland. Shineʼ, and build upon the Yellow and Shine event. strong foundations established Thank you to everyone that took in 2012. Schools, nurseries and offices part, and particular thanks to up and down the country took everyone that sent us fantastic part by having dress-down days photographs of their events, we and wearing items of yellow really enjoyed seeing what clothing, all to help raise money everyone had been up to. and awareness for Shine. We Hopefully 2013 will see us had a fantastic response from so increase the number of people If you want to get involved in your very own Wear Yellow and Shine event, you don’t have to wait until next October, so please contact Hannah on E: or T: 01733 421351, for ideas on how your friends, family, school, or work place can hold an event to benefit Shine. 17
  22. 22. SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:03 Page 19 News Shine raises £4000 through Bullens partnership Readers may remember If you use prescription items receiving a competition-survey The reason that Shine is of any sort and would like to from Bullens Healthcare last so pleased is that 5% of find out more, you will find a year which offered the chance to the value of each order is freepost reply card with this win a trip to Disney World for a donated to Shine, an issue of Together – just fill it family of four or £3000 worth of arrangement that raised in and send it back. There is equipment to the winner. The £4000 for Shine in just over no obligation on anyone, survey also offered entrants the six months. This money Bullens customer care staff will opportunity to talk to Bullens goes directly into helping call you and answer all your about receiving their prescription us provide our nationwide queries and then its up to you. products from their free services for members and Or you can simply contact personalised on-line service. is highly valued in these Bullens, saying you have seen difficult times. this article in Together, by Member Steve Leathart from calling T: 0800 269327 Wisbech was the lucky winner Bullens are happy to talk to and chose to have £3000 of anyone about their service at equipment as his prize. We are any time. Their personal We hope that this partnership also very pleased to learn from healthcare staff are on hand to will go from strength to strength Bullens Healthcare that around discuss your prescription needs and raise even more in 2013. 140 Shine members took up and explain how their service A big thank you to everyone the opportunity of having their works – and remember it is free who used the Bullen Healthcare prescription products delivered to Shine members but Shine Service and helped us raise to their door, at no cost to still gets a cash donation from these valuable funds for themselves. each order. our work. Shine Associations As the months go by we are seeing a steady increase in the number of local associations who are changing their name to Shine. So far these include: If you would like support from Shine as a local association then please call T: 01733 421361 18
  23. 23. SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:03 Page 20 NEW 11-14 Club! ATTENTION ALL 11-14 YEAR OLD MEMBERS! Shine is starting a new network for 11-14 yr old for your age group. You will then get the chance members with SB/H. We have asked young to enter competitions with great prizes, contact people in this age group what they would like other young people like you, read articles on from a ‘club’ and they say they want to be brought issues that you care about, and go to events together. Lots of 11-14 year olds said they feel where you can meet up with each other. lonely or isolated and that it would be great to meet other teenagers who also have SB/H. Itʼs your club, so itʼs up to you to choose the name. Everyone who completes the form below We can help! If you join the club you will get to vote for a name will be membership to a new network designed especially entered into a prize draw. First Prize: FREE DAY PASS FOR 2 ADULTS UP TO 4 CHILDREN TO WOBURN SAFARI PARK! (Valid until 31 October 2013). If you are unable to finance travelling to Woburn and you win first prize, we will arrange for a suitable alternative Second Prize: £25 Amazon vouchers Third Prize: £10 Amazon vouchers Please complete and post this form to ʻShine 11-14ʼ, 42 Park Road, Peterborough, PE1 2UQ. Closing date for entries is 28 February 2013 and the winning name will be announced on 4 March 2013. Cut here I think the new club for 11-14 year olds should be called: ʻThis is Meʼ ʻShine Youthʼ ʻJust as I amʼ ʻ11-14 No Limitsʼ ʻShine 11-14ʼ (Please tick only one box, only one entry per person allowed). Your name Your age Your address 19
  24. 24. SHI_Together_Issue8_AW_v5_Layout 1 06/02/2013 11:04 Page 21 New SAMC Shine’s new Adult Members Council appointed Nine Shine members have SAMC has had a big influence Isom on T: 01733 421308. been appointed to serve on on our work since we became The new Shine Adult Members the Adult Members Council for Shine, bringing significant Council members are: the next three years. The issues to the fore. It was members, who all applied instrumental in last yearʼs major Lisa Cain (Chair) Essex through the process described health survey which will be the Lisa has spina bifida and in the last Together, have been subject of a hard hitting report hydrocephalus and is also a appointed directly because the this year.” Director of Shine. She works for number of applications was the London Borough of too low to allow an election to The existing Adult Members Redbridge Blue Badge scheme run; there were nine Council will meet one more time and is experienced at applications for 10 places. before disbanding, and the representing Shine and its induction process for the new issues nationally and Shine HQ Services Manager SAMC will begin in the Spring. internationally. Lisa is also a Dave Isom said that although This year the Council is likely to keen skier. the number of applications was be considering the impact of disappointing, he was delighted health service and benefit Mike Bergin (Hull) to welcome some excellent new changes on members, as well Mike has served both on SAMC members onto the SAMC, as as looking at ways of increasing and on Your Voice, the body that well as to welcome back some and developing Shineʼs existed before SAMC. He is the experienced members. membership. There is also a Councilʼs Communications major event for adult members Officer and represents Shine “We hope that as the work of the in July. both nationally and newly elected SAMC gains a internationally at events and higher profile, other members Anyone who might have missed conferences. Mike has spina will come forward whom the the article in the last Together bifida. He has two grown up group can consider co-opting at and is interested in the Council children. a later stage” he said. “The is welcome to contact Dave 20