The Birmingham Multiple Sclerosis Society Newsletter Registered Charity numbers 1139257, SC041990 Issue 38 Winter 2013-14 HOW TO CONTACT US: by phone 0121 2465876 by email [email protected] by post MS Society Birmingham Branch, 399 Heath Road South, BIRMINGHAM B31 2BB our website is at: http://www.mssociety.org.uk/birmingham S easonвЂ™s greetings! You will hopefully receive this latest edition before Christmas, though at the moment it is touch and go with the editor having been beset by illness, crashing telephone, computer problems, and all the general rush to get things done in time. Probably something like what many of you have been experiencing yourselves. At least it has been mild so far. The Christmas lunch was the most successful one for a number of years, and a report is on p 2. Stephen Leake kindly provided one raffle prize of two tickets to the panto at the Hippodrome, and the Plough and Harrow gave two prizes of a tea for two and a meal for 2 at their restaurant. The raffle raised the great sum of ВЈ170 for branch funds. We take a break from our usual content for a few pages in this issue to give you two interesting and very encouraging and positive accounts provided by two young volunteers who have both been supporting the branch recently. The provision of care is an increasingly problematic topic, and we include details of two forms of provision which you may like to get further details of. These accounts are on pages 8 and 9. Our next edition should be out in March. Until then, keep warm! All views expressed are the authorsвЂ™ & not necessarily those of the MS Society. N early 50 members and friends of the branch came to the Plough and Harrow to enjoy the branchвЂ™s annual Christmas lunch, which this time also celebrated the 60th anniversary of the MS society. A number of guests consisting of people who have helped the branch in various ways also responded to our invitation. They included Sarah and Eileen, who run our Exercise and Tai Chi classes, Dawn Brookfield who has raised funds for us, Fraser Tennant, who has provided informative articles on the ever-changing state welfare provision for BruMS, and staff at Tuckeyprint, who are our friendly and always willing printers. The proceedings were enlivened throughout by the charming voice of Yolanda Penn, our invited singer. They were brought to an end with something of a bang by Cole Ward! We were also very grateful to be presented with ВЈ2000, the result of a collection by "Medics Operating for Others" Christmas party at Birmingham University. The picture (right) shows Sam, Sarah and Anjali. Confirming the total with David Whitfield. One slight blot on the proceedings was that most people had left by the time our 60th anniversary cake was produced. For those who missed it, here is a picture. The rumour that committee members polished it all off is untrue! It went to a residential home the next day where it was much appreciated by those living there. Our warmest thanks to Sandy for organising the occasion! 2 BRANCH ACTIVITIESвЂ”COME ALONG AND GIVE THEM A TRY! Art and craft classes. Fortnightly Mondays 11 am - 1 pm. ВЈ3 per session at the Kings Heath Quaker meeting house, in Colmore Rd, Kings Heath, B14 7PE . Contact Zoe on 0789 124 0627 for more details. Exercise classes: Weekly on Fridays starting at 11.30 am at Cocks Moors Leisure Centre, Alcester Road South...For more information contact the branch on 0121 246 5876 North Birmingham exercise class. Second and fourth Tuesday of the month. At Summerfield Community Leisure Centre, Winson Green Road, Winson Green B18 4EJ. Classes are followed by coffee socials and group meetings. For more information, please contact Cleo Reid ([email protected]) or any of the addresses on the front page. Tai Chi exercise classes. These are now held at the Kings Heath Quaker meeting house, in Colmore Rd, Kings Heath, B14 7PE (opposite the main entrance to Kings Heath park). Carers, relatives and friends are all welcome. The cost is ВЈ3 per session. Next sessions January 18th, February 15th, March 15th, April 19th, Motomed machine. Queen Alexandra College in Harborne has a disability-friendly gym with specialist equipment including a Motomed machine for the use of people with MS. For details please contact Gaby on 0121 680 8446. Please leave a message if she is not there. ChuMS is an informal get-together for anyone affected by MS, which meets on the second Saturday of the month from 2 - 6 pm at the Garden House pub on Hagley Road. For more information please email [email protected] or join Birmingham Chums group on Facebook. If you need transport to any event, please contact our transport manager, Chris Kyne, on 07900-152-666. 3 вЂ�My Rollercoaster YearвЂ™ Sophie Minor: Young PersonвЂ™s Co-Ordinator About a year ago, whilst studying at the University of Southampton in my final year, I found I was finding it difficult to walk to and from my final exams and struggling to see the words on the exam papers. No doctor seemed to be able to diagnose my problems, until the day before a fifth doctors appointment, where my whole face had drooped, leaving me unable to smile, wink or close my eyes to sleep. That day I was rushed to A&E and after four days in hospital with a steroid drip I had the diagnosis of Multiple Sclerosis, which turned out to be an aggressive form. The diagnosis seemed to explain so much, including the years of balance problems and consequential falls. After being called вЂ�clumsyвЂ™ and вЂ�accident-proneвЂ™ for most of my life it was good to finally understand why! I was 21 at the time and knew then, I might need to adapt some aspects of my future. I found myself taking on new challenges At first, I found this very difficult as I had never heard of Multiple Sclerosis and was too scared to do any research. I didn't know what to expect. Although I was upset and confused, I found myself taking on challenges that I might not have encountered before my diagnosis. I travelled to Sri Lanka to teach English to teachers and found myself also teaching Conversational English to over 70 Sri Lankan Army Officers. I have also recently completed the Birmingham Half Marathon, which is something I never thought I'd ever be capable of. I also found that the diagnosis of MS seemed to make sense for me. Experiences like this led me to accept my diagnosis as I felt I did things I never thought I would or could do. Now I understand the condition more and have my smile back! When I was diagnosed with Multiple Sclerosis, I found it difficult to explain to friends what I was going through or how I felt, as I didnвЂ™t know myself. I also felt quite alone. Although my family, friends and health professionals were all there, I felt quite alone and that I had to come to terms with the diagnosis myself first. I am now, after a, roller coaster year, proud of the diagnosis given to me and I now volunteer for the MS Society as a young personвЂ™s co-ordinator of both the Birmingham and Dudley Branches. As the young person's co-ordinator, I am planning to hold an event for young people with MS and also those newly diagnosed. This will be a fun, informative event, which will hopefully make the new diagnosis easier to deal with, and provide a place where people can get to know each other and have the chance to talk about issues they might not have otherwise had the chance to. 4 A place where people can get to know each otherвЂ™ MS is an unpredictable condition and what's around the corner is not known but everyone I have met with the condition so far has taken this in their stride and I just hope I follow this myself and help others to. I look forward to the challenges in my new role as Young Person's Co-Coordinator of both the Birmingham and Dudley Branch If you are interested to find out more please get in touch: Email: [email protected] Or follow us on Twitter: @Birm_DudMSYouth Smiles from Sophie and other participants in the Birmingham half-Marathon (the BUPA great Birmingham run) who ran to raise money for the MS society on 20th October. The next one will be run on 19th October 2014 5 Volunteering with the MS society: F rom June to July of this year, I had the honour of volunteering in a thoroughly enriching experience for the Multiple Sclerosis (MS) Society in Birmingham. My first port of call in this volunteering cruise was situated at the Birmingham City Council building courtesy of the bubbly and vivacious Zoe, who invited me to partake in the Zoe! volunteering marketplace event, for which I am exceedingly grateful. Suited and booted with the MS attire, an orange MS bib and two swanky badges, we set about trying to garner donations, new society members and volunteers in what proved to be a tremendous and insightful few hours of work. ChrisвЂ™s MS (bat) mobile! Not long after this very enjoyable episode I next docked my vessel, i.e. my bike, at the MS society transport vehicle to act as an escort to half a dozen adults affected by MS. This involved transporting them to the MS vehicle and then securing them safely into the vehicle, before heading off to a specially equipped MS gymnasium. Before this however I had the privilege of meeting of Chris. A septuagenarian that defied his age with boundless energy and charm as he leaped, vaulted and cart wheeled (slight exaggeration) hither and thither. We got on like a house on fire. An вЂ�Six packвЂ™ Pete absolute joy of a man who talked to me about Wordsworth, Wilde, Wodehouse, Thomas Gray, Byron, Shelley and other poetry, for which he produced his own work. He called it вЂњpoizinвЂќ, a former illicit whisky drink, and when applied to his poetry he said, вЂњin small dosesвЂќ, like the whisky drink, вЂњit wonвЂ™t cause any brain damage!вЂќ 6 On our journey we first picked up the warm-hearted Pete, later known as six pack Pete in reference to his six pack of beer in the fridge and not his abdominal muscles. Gabby and Judy! Next up was the hilarious Judy; a lover of cigarette breaks at the gym, Madge; had so many great family anecdotes and recollections of TV shows gone by, Zoe; who never stopped smiling and finally Gabby; a lover of the gym where we had some great chats. For the next hour or so we went round the gym helping each other to enjoy a great time together in another wonderful experience with a fantastic group of people. I would recommend volunteering with the MS society to anyone in a heartbeat and I am only disappointed that I couldnвЂ™t spend more time with these great people. The MS society can provide superb emotional support, the right care and benefits guidance to healthcare professionals, carers and families affected by MS, for which 100,000 people in the UK are affected by. 7 Birmingham City Council Transforming lives through telecare B irmingham City Council is transforming the lives of thousands of local people through an innovative technology-enabled service called telecare. The Birmingham Telecare Service uses a wide range of technologies that help people with health and social care needs to live safe, independent lives at home. BirminghamвЂ™s telecare also includes a round-the-clock response service that means people can get help whenever it is needed. Introduced in 2011, working in partnership with Tunstall Healthcare, the CouncilвЂ™s service essentially maximises peopleвЂ™s independence while minimising risks such as floods, fires and intruders. Birmingham City Council understands that every individual has different needs, so its telecare services are always personalised for the user. Telecare packages may include sensors placed unobtrusively in the home, a heat, gas, flood or fall detector, or a personal alarm worn as a pendant, wristband or watch. The Birmingham Telecare Service is not only a source of confidence and reassurance for those using it, but it also gives families and carers freedom and peace of mind and can help everyone to live better lives. Want to know more about how telecare can help you? Call 0844 415 9393 or visit www.birminghamtelecareservice.co.uk 8 9 MEDICAL RECORDS: (We have received the following information from another MS Branch, concerning changes to personal and confidential medical records. We pass it on to members, but anyone should seek further advice from their GP practice, or from the website www.hscic.gov.uk, if they wish to take action.) GP practices nationwide will soon be required to supply patients' personal and confidential medical Information, on a regular and continuous basis, to the Health and Social Care Information Centre (HSCIC). This information will be extracted from the practice in a form that will include your NHS number, date of birth, postcode and gender. Under the Health and Social Care Act 2012, GP practices have no choice but to allow the HSCIC to extract this information. The programme, called care.data, is administered by the HSCIC using software and services provided by a private sector company (ATOS). The data will be stored on HSCIC national servers and not on GP systems. The HSCIC will administer the data, and states it intends to use it вЂњfor planning health services and for researchвЂќ. This is known as вЂњsecondary usesвЂќ of your medical records. Once the data has been extracted, the GP practice is no longer the data controller for that information, and cannot control or protect in any way how that information is used, shared or who has access to it. The HSCIC will be the data controller for your uploaded information and will have total control over it. Although GP practices cannot object to this information leaving the practice, individual patients and their families can instruct their practice to prohibit the transfer of their data, i.e. you have the right to opt-out. Opting-out will have no effect on the medical care that you receive either from your GP surgery or from anywhere else within the NHS or private sector. Nor will it affect your GP surgery and the way it provides services. If you do nothing, i.e. you do not opt out, then your medical information will be extracted and uploaded to the HSCIC. You will still need to opt out to prevent care.data uploads even if you have already opted out of the NHS Database (The Summary Care Record). The NHS Database opt out will not prevent care.data uploads. There is a lot of information available about care.data, which you may chose to refer to before you decide on whether you wish to opt out or not. How do I opt out ? Fill in the opt-out form at your doctorвЂ™s practice and return to the reception (or hand it to the doctor or nurse that you are consulting with). 10 вЂњMS-SMARTвЂќ - A NEW MS DRUGS TRIAL The MS Society is supporting a new drugs trial to be carried out under the management of the University of Edinburgh. Volunteers are currently being sought for the trial. Three drugs are to be involved, any or all of which could change lives by slowing or stopping progressive MS in its tracks. The drugs: Riluzole, the only UK licensed treatment for motor neurone disease, has been tested in a small trial for people with progressive MS which showed that it had slowed down the rate of brain shrinkage. Ibudilast is a treatment for asthma, and has shown encouraging anti=progressive results in brain scans in people with MS Amiloride has been used for years to treat high blood pressure. It has shown signs of reducing brain shrinkage in a small trial of people with progressive MS The timescale: The timescale for the trial is recruitment phase (starting soon) , to last one year. The drugs trial will then last two years. Then the analysis of the results will be done by scientists at University College London, after which findings will be presented in 2017. Who can join the trial? The main eligibility criteria are: п‚· Age 25-65. п‚· Not on DMT (disease modifying treatment). п‚· Still able to walk between at least 20 metres (even with the support of 2 crutches) or up to 500 metres without help. If you or someone you know would like to take part, please go to www.mssociety.org.uk/ms-smart for fuller details. Wishing you all a merry Christmas and a happy new year! 11 INVITATION TO PILATES SESSIONS P ilates is an exercise system that focuses on stretching and strengthening the whole body to improve balance, muscle-strength, flexibility and posture. It was created by German-born Joseph Pilates in the early 1900s and incorporates elements of yoga, martial arts and Western forms of exercise. (definition from Wikipedia). We have received an invitation for a free pilot trial of the Pilates system, for people affected by MS. This will take place early in 2014, probably at a central Birmingham venue. This should add to our already successful exercise and T'ai Chi classes. If you are interested to take part, please let us know what days and times would suit you, and your level of mobility. If central Birmingham is difficult for you, it is possible that another location could be arranged. If you are interested, please send the above information, and your name and contact details, to: phone - 0121-246-5876 text - 07746-130-806 email - [email protected] Chair Zoe Berry Andy Jarrett Doreen Katusiime Baldish Kaur Philip King Chris Kyne Sandra Lamb Sara Leung Verity Milligan Sophie Minor Ivon Mouanda Cleo Reid Jane Smith Janet Watts David Whitfield Member Regional fundraiser Health and Safety Officer Fundraiser Newsletter editor and membership secretary Transport manager Member Publicity officer Website editor Lead Young People Coordinator Assistant treasurer North Birmingham group organiser Lead development support officer Treasurer Support lead Yushi Zhang Fundraiser 12 BRANCH COMMITTEE Laurel Mcleod