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together issue three 2011 inside this issue introducing gobi inspirational students and much more registered charity no 249338 1

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4 news and views 8 meet gobi 14 meet ashleigh it may only have been a few weeks since you received the second edition of together but we were keen to get back on track with our quarterly publishing date so here we are in issue three everybody at shine is working flat-out to be ready for the launch on 20th october and you can read all about this and all our other developments in this 24-page edition of together in this issue we warmly welcome gobi ranganathan our new membership development officer gobi will become a very familiar face to all of the shine membership and you can get to know him better in our feature interview on page 8 we also hear from inspirational students casey bottono and ashleigh parry who will both start their studies at university this october ­ see pages 14 and 18 for more we are as keen as ever to hear what you have been up to and what you would like to see here in together if you would like to share anything then please contact me at tom.scott@shinecharity.org.uk i d love to hear from you contents news and views shine awards reflexology day star s freedom of london meet gobi 4 5 6 7 8 day in the life of our health development manager 10 meet ashleigh parry christmas cards meet casey bottono samc news programme of events submission dates for autumn edition register of interest to submit 23rd december 2011 final date for submissions 7th january 2011 publication date 21st january 2011 14 16 18 22 23 editor all enquiries and comments to together shine 42 park road peterborough pe1 2uq telephone 01733 555988 textphone service 01733 421395 please let us know if you are happy to receive future mailings by email as this saves on postage and helps the environment email info@shinecharity.org.uk registered charity no 249338 info@shinecharity.org.uk www.shinecharity.org.uk 3

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news somerset shine the somerset association for spina bifida and hydrocephalus has become the first local association to adopt the new shine name and logo style the decision was made at the charity s agm on 20th september and shine somerset will be launched at the same time as national shine on october 20th 2011 employment prospects we have heard from some of you about your experiences with employment as part of our new five year strategy we want to find out more and come up with ways of improving the employment prospects of our members so can i ask you to let me have your personal experiences of employment so that we can begin to look at what we can do you can write to me at the regional office telephone me or send me an e-mail i look forward to hearing from you jo francis london and south region development manager 209 crescent road new barnet herts en4 8sb tel 0208 449 0475 e-mail jo.francis@shinecharity.org.uk volunteers at head office you may sometimes wonder how we manage to get 9,500 copies of together posted out to you every three months well we have a team of volunteers that come in from pcvs and work non-stop until the job is done we really appreciate all they do and offer a big `thank you to all involved congratulations to scott nielson huge congratulations to cyclist scott nielsen on completing his epic 2000km ride from copenhagen to liverpool scott who is 18 and has hydrocephalus raised a tremendous £2000 for shine you can still add to this total by visiting scott s justgiving page here http www.justgiving.com/scott-nielsen 4

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news shine awards the first shine annual general meeting on november 17th 2011 will also see the first shine achievement awards as well as the shine lifetime achievement award this year will see the introduction of four new awards shine young achiever shine professional shine fundraiser of the year and shine unsung hero the shine unsung hero will be decided based on nominations from the shine membership if you are reading this before november 10th there is still time to send in your nomination for the person aged over 18 who you think deserves an award for their hard work and dedication in the field of spina bifida and hydrocephalus it could be a member with spina bifida and/or hydrocephalus a parent carer local association or support group volunteer sports coach or any other person whose outstanding efforts deserve recognition to nominate someone please send in the person s full name address and contact details then in no more than 400 words please explain what they do and why you think they deserve to be the winner of the first shine unsung hero award the award winner will be invited to the agm on 17th november to be presented with their award and commemorative certificate by shine chair richard astle you can e-mail your nomination to tom.scott@shinecharity.org.uk or write to shine unsung hero award tom scott marketing and communications officer 42 park rd peterborough pe12uq or if you prefer you can call on 01733 421361 and we will record your nomination for you hydrocephalus event `inspirational more than 70 parents carers and professionals attended `hydrocephalus ­ the hidden disability a shine event held at westpoint conference centre exeter the day focused on equipping those attending with an understanding of how hydrocephalus can affect learning development and behaviour delegates were also introduced to strategies for helping children with hydrocephalus to achieve their true potential feedback rated the event as `inspirational and `better than i could have hoped for speakers included consultant neurosurgeon ian pople from bristol s frenchay hospital who explained the causes and treatment of hydrocephalus and parent jane jones who is the mother of jacob aged 11 who has hydrocephalus casey botono aged 19 gave a moving speech about how she had overcome many challenges to achieve a place at university this year see casey s article on page 18 and shine s health development manager gill yaz provided information and insight into shunt malfunction and how hydrocephalus can affect a child s cognitive behaviour finally a range of workshops explored issues such as sleep management welfare benefits cognitive processes education and practical solutions to support children with processing difficulties delegates left asking for `more of the same and shine is now looking into ways of developing a regional programme of such events so that participants from all over the country have the opportunity to attend jane jones shares fron her experience 5

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news an evening of reflexology thanks to support from the big lottery fund in wales and the volunteering in wales fund south wales members of all ages enjoyed an evening of reflexology in cardiff in september tracy wheeler a shine cymru qualified reflexology practitioner from cardiff-based take sixty gave an extremely interesting and witty talk about her experiences of reflexology and its potential uses in managing conditions associated with spina bifida and hydrocephalus including urine infections constipation anxiety and stress members were then treated to reflexology taster sessions by tracy and two of her colleagues who generously volunteered their time for the evening the evening also gave our members family and friends an opportunity to meet others and share experiences for further information on reflexology and services offered by take sixty visit www.takesixty.co.uk or contact tracy at enquiries@takesixty.co.uk restricted funds release shine has two appeal funds with value of £85,000 which cannot currently be utilised effectively the funds were set up so that any income generated could be used but not the original capital income generated in recent years has been much reduced due to falling investment returns the trustees wish to remove the restrictions and include the remaining funds as part of the general reserves so that they can be applied to shine s wider charitable purposes in 1973 £55,000 was raised by asbah from an appeal to set up a research fellowship fund since then income has been generated from the fund and over £90,000 paid out in grants nothing has been paid out since 2003 as the income generated is too low to fund an effective fellowship in 1989 £30,795 was raised from an appeal for funds to set up a bursary fund to give educational grants £63,000 has been paid out in grants over the years as the fund was topped up by the trustees charity commission regulations specify that any change to restricted funds requires the consent of the original donors any members who donated to the original appeals are asked to email margaret connor on margaret.connor@shinecharity.org.uk by 30th november 2011 with your details advising whether you agree to the change of use of the funds or any concerns you have agm date the first shine agm will take place at head office on november 17th 2011 6

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news former eastenders star gains freedom of london shine is proud to share the news that as well as becoming a member of bafta our patron actor david proud has been awarded the prestigious honour of the freedom of london david who has spina bifida and has been involved with shine since a young age received the award at a special ceremony on 16th september at london s guildhall the former eastenders star is thrilled to have been chosen for the honour and commented `it is going to be a very special honour for me i really hope i can use this role to highlight the fantastic work of the many charities i work with explaining the special regard he holds for shine david said `i have spent a lot of time working with shine meeting people with spina bifida and hydrocephalus from all over the country the staff at shine do such a vital job and support the lives of so many families it has and always will be a great honour to be their patron benny bear 200 members benny writes as the summer comes to an end it s time for me to look back on a great few months the benny bear club continues to keep on growing there are now over 200 members in the benny bear club and i m looking forward to the future ­ we are going to have so much fun i have visited people all over the country and i can t wait to see you all again soon in october i will be involved in various events as we celebrate the launch of shine we are about to launch our new fundraising scheme ­ benny bear s birthday ­ so watch out for more on this in the coming weeks your school community group or your friends can get together and host a benny s birthday event have fun and raise some money for shine to find out more please visit www.bennysbirthday.co.uk or contact cerys long on 01733 421329 cerys.long@shinecharity.org.uk appointments staff changes are afoot at shine and we have 2 new enthusiastic members of staff to welcome on board the first is gobi ranganathan our new membership development officer who started work with us on september 19th you can read more about gobi in the interview with him on page 8 sandra campbell is the new support development worker to join the northern ireland team welcome too to sandra sandra comes from a background in education and her most recent position involved advocacy and support for the the progressive supranuclear palsy psp association sandra s experence means she is well matched to her new role and will bring some excellent experience to the shine ni team sandra started with us on october 1st 7

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feature as gobi ranganathan takes up his role as shine s new membership development officer tom scott learns more about how living with spina bifida has both challenged and shaped the character of a truly inspiring person born in singapore and raised in stevenage england from the age of three gobi s journey has been one of test turmoil and triumph he has literally been to the brink and yet continues to defy all the odds and maintain his place as a top para-athlete gobi admits that it hasn t been easy to achieve what he has ­ succeeding at school and then gaining a degree competing as a top para-athlete and establishing a successful career whilst undergoing multiple operations for mobility and continence control `but he says `it s definitely been character building gobi ranganathan takes up his role freedom gobi could only walk short distances as a child and attended lonsdale special needs school stevenage after a year the staff suggested that he might benefit more from a mainstream primary school environment and he successfully made the transition at secondary school gobi began to use his wheelchair more frequently `moving between classrooms it was necessary to be in the chair to be honest i found it liberating to be able to move myself and decide where i was going without anyone pushing me gave me a great sense of freedom sports star gobi also began to explore his interest in sport he developed a passion for swimming and was soon competing in para-swimming competitions he enjoyed this but it was a tough environment to be in `the thing was there were a lot of politics in swimming in terms of how they categorise para-swimmers for example i was competing against guys who were diving in and could push off the wall with their legs at the turn i just got on with it but after a while you see guys getting selected over you with their advantage and it just isn t worth it gobi continued swimming throughout university but it was badminton that became his main focus and he rapidly demonstrated remarkable talent and dedication before long he was regularly winning against both disabled and able-bodied players then in 2007 gobi made it to the parabadminton 4 nations championships 8

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feature to the brink as gobi was developing his academic and athletic potential he was also periodically undergoing serious surgery `keeping healthy definitely helped me deal with the operations i was having after my surgery for a mitrofanoff revision in may 2011 i was told the recovery could take up to 4 weeks ­ i was out in 2 the urology team were impressed with my recovery and knew i would be better off at home it wasn t long before they gave me the green light to get back into light training again at 18 gobi had been one of the first people to have a mitrofanoff procedure to enable him to self-catheterise this was relatively problem free until his need for a revision of the operation earlier this year however his most dramatic experience followed a visit to a walk-in clinic in 2005 to check out a lump in his stomach the diagnosis of a strangulated hernia led to a six-month stay in hospital continued on next page in cardiff and won a gold medal in the men s doubles as a high performance athlete gobi still trains 4-5 times a week on the court as well as working in the gym `i use the hand bike a lot to keep my cardio fitness up the gym i go to have been great they even removed the bike s pedals that used to spin around and hit my legs what is a mitrofanoff procedure creation of a urinary tract using the appendix or urethra enabling intermittent self-catheterisation 9

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after surgery gobi became violently sick he was diagnosed with an infected abscess and recalls being rushed into theatre only to find that the emergency list was too long gobi heard his consultant say to a colleague `yeah his body s shutting down thankfully the theatre was kept open and gobi underwent life saving surgery a week later something was still very wrong as gobi says `when you can see what you re eating coming out of your stomach it ain t great this time gobi had a fistula ­ a ruptured bowel and had to have a colostomy operation life as a top sportsman now seemed like a distant memory however a colostomy reversal operation followed in february 2006 and despite then becoming infected with the mrsa bug he pulled through to make a recovery in march 2006 six months after entering the walk-in clinic gobi was able to go home it was another three months before he was feeling well again far from finding reasons not to get on with life gobi remarks `i m one of those people i get on with it i cope with it today gobi is once again at the top of his game having just regained the uk men s parabadminton no.1 spot the future in his work with shine members gobi hopes his own experiences and resilience will provide inspiration `people are quite scared of what they don t know it is a big wide world out there but it s not that scary `my experience is that there are people and systems out there to help and i want to help people plug into this so that they gain opportunities to do their best in life gobi will be engaging with every aspect of the shine membership over the coming months in an effort to hear what you have to say and what you would like to see happen to contact gobi direct you can email him at gobi.ranganathan@shinecharity.org.uk keep in touch with gobi on facebook facebook.com/shine.gobi.ranganathan about para-badminton para-badminton is played at domestic and international level with various international opens including european championships and world championships the next being this year in november in guatemala 10

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campaign ­ folic fred `hilarious `saucy `great fun ­ folic fred is going down a storm complete with a dodgy french accent folic fred the seducer sets out to charm women into taking folic acid before they get pregnant `take me take me now watch him watch him now ­ zoe burnay go folic s latest video is equally memorable and completely different a very poignant film it features a mother speaking about her daughter who has spina bifida and hydrocephalus mumsnet have been helping us to promote the film which people tell us they find very moving the videos have already had over 4000 views on you tube thank you to everyone who has passed these links on to their contacts keep going as we want go folic to go viral to view these films visit gofolic.co.uk thanks to vitabotics the go folic campaign receives contributions from various supporters we would like to take this opportunity to thank everyone at vitabiotics and pregnacare for their funding for the first two go folic films proudly supported by vitabiotics supplements fit for success is shine s programme to encourage our membership to keep fit and healthy and achieve success in sport as part of this initative we are introducing `challenge gobi you can challenge gobi to try a new activity and he will feedback on how approprate it is for disabled participants to challenge gobi email your suggestions to tom.scott@shinecharity.org.uk 11

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a day in the life of shine s health development manager what is a day in my life like good question as no two days are the same which is why i love the job so much today for example i m off to liverpool to meet with a group sharing their experiences of staying healthy with spina bifida which follows on from a successful and enjoyable group meeting of adults with hydrocephalus in exeter last month at the moment i m looking at ways of keeping in touch with the groups using modern technology like skype although it s not quite the same as meeting you in person tomorrow i ll be catching up with my messages and talking to members who have health questions for me i particularly enjoy talking to people about their bladder and bowel challenges knowing how big an impact they have on health and how people feel about themselves i ll have a look at our facebook page too in case someone has posted a problem i might be able to help with don t forget you can always contact us directly since starting my new role as health development manager earlier this summer i ve been working on some exciting new projects including some new surveys looking at the health issues you face and what you think about the services you receive this will help us look at better ways to support you to stay well and highlight any concerns you have about your local health services i m still attending some clinics which gives me the chance to meet families i always learn something new there too i hope this gives you a glimpse of my `typical day i look forward to hearing from you in the future if you have any health questions or if you want to add your voice by completing one of our questionnaires in the coming months contact gill on 0208 449 0475 or email gill.yaz@shinecharity.org.uk getting to grips with a shunt with the help of benny bear discontinued catheters news that scott catheters a plain catheter for intermittent catheterisation is no longer to be manufactured has caused a stir amongst some of our members we have been contacted by several ladies trying to find a suitable replacement and it s proving quite a challenge coloplast who have been making the scott blame lack of demand for the product for it s discontinuation and suggest trying their self-cath range suggestions from other services iclude safetycat from hunter urology and coloplast s speedicath compact might be worth trying if you are having trouble finding something to replace your scott catheters with please contact me on gill.yaz@shinecharity.org.uk and i ll arrange to have some samples sent out 12

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shining a light on the printed word as we say farewell to `asbah and hello to the new organisation of `shine i feel sure that we all hope that the best facets of the old organisation will be transferred to the new but also be accompanied by many new initiatives to further encourage members to develop independent and rewarding lifestyles and play a fuller part in the organisation itself as a member of the shine adult members council and a support and development worker for shine perhaps i should point out to readers who don t know me that i have spina bifida i also have hydrocephalus for which i had surgery in the mid-1950s leaving me visually impaired due to nerve atrophy if we are to address this matter of the lack of access to shine literature to such members then the first step must be to accurately establish how many print disabled people shine has in its membership if they are denied this opportunity they may not be so easily encouraged to overcome the many other barriers in society to independent living statistics on the database are sadly lacking in this respect because information about supplementary conditions and disabilities is often not available thus far there are 9 people identified as having a visual impairment 35 who are blind and 9 who have a learning disability dyslexia is not even identified as a disability at present there will also be a number of others whose additional disabilities have not yet been recorded i would respectfully suggest that if any individual has difficulty reading together and the other literature produced by shine they should contact the national office to have these specific difficulties noted alternatively contact your support and development worker and make sure that you receive printed material in the format that most suits you john richards shine support development worker bedfordshire hertfordshire and buckinghamshire throughout the majority of my life whether being served by braille audio formats or email i have had to rely on the written word being edited by the transcriber my father for example almost driving himself hoarse reading me literature of various kinds would even occasionally say `oh you don t want that it s rubbish thereby almost acting as a censor i have many times raised the issue of printed material about our organisation our conditions and other information being available to anyone who is `print disabled being print disabled due to visual impairment dyslexia a learning disability or an inability to hold a written document link magazine was occasionally read to me by members of staff onto cassette outside working hours i gather that it was also available in large print if read on-screen 13

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feature beginning my life as a hydrocephalic oxonian who three years ago would have thought that i would be here now at that time i had been severely ill with shunt malfunction for around a year and could see no sign light at the end of the tunnel i had weathered all the uncertainty of a-levels while still picking myself up from missing gcse s often exhausted and struggling to come to terms with what i had experienced when results came i was ready for them to possibly not be what i had hoped despite all of the work that i had done upon finding my actual results it was with a brimming feeling of such happiness at what i had managed now though here i am readying myself to go to oxford the university of my dreams at worcester my dream college with regards to my hydrocephalus i feel better now than i have felt in years recently i visited mr mallucci at liverpool s walton centre a brilliant consultant by the way and had ct scans for the purpose by ashleigh parry of check-up seeing the perfect position of my catheter in ventricles of an acceptable size on that image was almost enough to make me well up but when it comes to looking ahead every day my excitement for going away is growing as i hear more and more about the cultural academic and recreational opportunities that will be open to me freshers week beckons through flyers and facebook invites for events club nights and meals out however before i can even get there there is the mountain of preparation to be overcome all of which has had to be accompanied by hundreds of post-it note lists just for me to keep track of them some of these experiences i will share in common with other students at my college irrespective of whether they have hydrocephalus or indeed any disability these include among other things the need to actually think about everything that one would normally borrow from parents or siblings and is actually going to have to buy now such as toothpaste make-up 14

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feature recognition software has been recommended by my assessor for easier notation and essaywriting something which i had never thought of as a possibility mum who has been my lifelong secretary has also been a godsend when it comes to organising this paperwork ­ her patience with it has been legendary she has also helped hugely with organising my packing she has thought of things which i had not even considered for example biscuits ­ not just for snacking but for bonding too mum will also probably be my best hope of fitting my copious wardrobe into the suitcase which now resides in the corner of my bedroom but alas with perfect foresight i know that i will still struggle to find anything to wear once i arrive and unpack in the gardens at oxford shower gel and paper to name but a few then one other issue i will share with the six others who have been selected to study my subject english language and literature namely the huge reading list which includes some formidably long dickens novels but this considering how much i love reading has not posed the greatest problem for my pre-university organisation what has been a terrible bugbear though and will particularly affect those with disabilities maybe those with hydrocephalus a little more so than some is the paperwork a disability disclosure form two medical forms and information to be supplied to student finance with a disability as complex as hydrocephalus which can have so many different and often subtle effects that adds up to a lot of writing and photocopying of letters and information i think that mum and i have used three large black ink cartridges since we began i have been very impressed though by the sheer range of special considerations provided by the college not only spanning to extra time in exams and rest breaks but also permission to photocopy set texts from the library and to record lectures the disabled students allowance aspect of student finance has a similarly wide and useful provision including certain equipment and software that i had never even considered for example because of the difficulties which i experience in written communication as compared to verbal voice now my matriculation gown is sent for my various forms and contracts in the post and the next task lies in alerting the john radcliffe hospital of myself my proximity and my condition although fingers crossed it won t be necessary i also need to do something about all of my belongings which are sorted in a drawer and a few shelves just to ensure that they won t be hastily squished into a suitcase at the last minute come october visiting worcester college with mum denise 15

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