The Birmingham Multiple Sclerosis Society Newsletter Registered Charity numbers 1139257, SC041990 Issue 37 Autumn 2013 HOW TO CONTACT US: by phone 0121 2465876 ← NOTE NEW NUMBER 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 From the Chair T he Birmingham Branch is moving along nicely. We are still in the process of raising our profile, which at the moment is not as high as we would like it to be. A lot of people whose lives have been touched by MS are not aware that we exist. This is a matter we are in the process of addressing by organizing awareness events. Christmas is not too far away now. You will find details of our Christmas lunch and Panto arrangements on pages 6 and 7. Our lunch this year is a celebration of 60 years of the MS society, and we are planning entertainment to go with it. Please book in good time, as the number of places is limited. The fundraising event which was held at the Tesco's store Spring Hill Hockley was a good day. I would like to thank everyone who took part, especially Sandy Lamb for organizing and coordinating the day. We raised nearly £250. Our Facebook and Twitter pages are now set up and running. For those of you who use these social media tools, why not add us to your friends list? This would be a good way of raising our profile as your friends would see all posts. We continually strive to improve the services we offer and with the new additions to our committee and volunteers, we hope to offer a service that is professional and informative. All comments or feedback would be gratefully received. Laurel Mcleod All views expressed are the authors’ & not necessarily those of the MS Society. PIP replaces DLA in West Midlands - but at what cost? By Fraser Tennent S ince its contentious introduction in April this year, the successor to the Disability Living Allowance (DLA), the Personal Independence Payment (PIP), has divided opinion between those who believe it’s an unfair, cost-cutting measure that targets those most in need, and those who feel it’s a long overdue mechanism for flushing out dishonest claimants. In the West Midlands, PIP replaced DLA for new claims in June 2013. PIP requires disabled people to meet a tighter eligibility criterion via a controversial new system of assessment. Bizarrely, the Department of Work and Pensions (DWP) has seen fit to announce that 600,000 disabled people will lose out on support by 2018 – a potential loss of between £20.55 a week and £131.50 a week – as a result of the new system. Overall, this equates to a loss of £2.62 billion pounds of financial assistance. Explaining the need for the new system, Esther McVey, Minister for Disabled People, said: “DLA is an outdated benefit introduced over 20 years ago and was very much a product of its time. PIP has been designed to better reflect today’s understanding of disability, particularly to update our thinking on mental health and fluctuating conditions. This will ensure the billions we spend on the benefit give more targeted support to those that need it most.” Many disability organisations have expressed their disbelief as to how the Government has been able to say how many people will lose entitlement as a result of the changes as many thousands of claimants are yet to be assessed. Richard Hawkes, Chief Executive of the disability charity Scope, said: “Life costs more if you’re disabled, but this year with living costs spiralling and income flat-lining, disabled people are really struggling to make ends meet. “What’s the Government’s response? It is cutting the very financial life-line designed to help them meet the extra costs they face. DLA needed reforming and could be better targeted. But disabled people believe this reform is just an excuse to save money. “It doesn’t help that the Minister is able to predict exactly how many disabled people will receive support before they have even been tested and doesn’t take into account all the barriers that disabled people face in daily life. This means the support won’t be targeted to those that really need it.” Echoing Scope’s view that the new system is merely an excuse to save money is Dr Aaron Reeves of the University of Oxford, co-author of a new study which analyses its likely impact on people with disabilities. He said: “Recent reports indicate that austerity is likely to widen health inequalities. There can be a direct effect through cutting effective treatment programmes. Then there are the indirect effects of increasing unemployment, poverty, homelessness and other socio-economic risk factors. “Imposition of a 12-month time-limit on non-means tested disability benefits will reduce payments by up to £4,212 per year for approximately 280,000 people. About 150,000 of these currently live in poverty and an estimated 50,000 adults are 2 Cont from previous page estimated to be at-risk of poverty due to these cuts.” Amidst all this, further concerns have been raised that the PIP assessment procedure – carried out by the private companies Atos Healthcare and Capita - is deeply flawed and is likely to repeat the mistakes made with the Work Capability Assessment (WCA), also carried out by said private providers. Indeed, the Guardian newspaper reported that the Department for Work and Pensions was forced to provide additional support after a Government Review found that WCA assessments carried out by Atos were of an �unacceptably poor quality.’ Speaking at the time of the West Midlands PIP launch in June, Claire Nurden, Senior Policy and Campaigns Officer at the MS Society, said: “We are seriously concerned that the change to PIP will have a devastating impact on people living with MS and other disabilities who really need support. "Despite the government’s claims that the benefit is to help those in the greatest need, we believe that it’s many of these people that will lose out." "We want assurances that the assessment process will be as fair as it can be – that means proper use of additional evidence and the abolition of clinical exams that are currently set to be carried out by assessors who aren’t properly qualified to do them.” Nurden is also calling on the Government to look again at the mobility criteria of the assessment after plans were announced to withhold disability benefit from any claimant who can walk further than 20 metres, even if they are making use of a walking aid. A letter signed by more than 10,000 people and over 80 charities and organisations which calls for the abolition of the 20 metre rule has been sent to David Cameron and Nick Clegg. Although at this stage it is a little too early to say what the differences caused by the new PIP assessment procedure and criteria will be compared to that for DLA, the DWP is expected to release (post-June) figures relating to PIP decisions in November 2013. And by then, presumably, Messrs Cameron and Clegg will have seen fit to respond. According to the the MS society, 45% of people with the progressive conditions MS, cystic fibrosis, Parkinson’s and rheumatoid arthritis who put in an ESA claim in the past five years were placed in the Work-related Activity Group, meaning assessors believe they will be able to return to work at some point. Seven out of ten new claimants with these conditions have also been reassessed two or more times on the same claim. [editor] 3 COPING WITH THE COSTS OF MS - Financial assistance from the Branch T he Branch may be able to provide grants for items needed as a direct result of MS, if no health or social service funding is available. Over the past couple of years, we have helped Birmingham people affected by MS with a variety of items, including wheelchair, outdoor ramp, driving lessons, profiling bed, walking aid, car adaptation. Requests for financial support, for people with MS, are considered against these priorities: to facilitate independence, to enhance quality of life, and to prevent crises. All requests are reviewed, in strict confidence, by the Branch Grants Sub-Committee. In considering requests, the Branch does not discriminate between members and nonmembers of the Society. The Branch will consider requests for help with: home adaptations and essential repairs, powered wheelchairs, scooters, communication aids, furnishings, domestic appliances, car adaptations, personal development costs, and some clinical aids. The Branch may be able to help with the cost of other items, but it is advisable to consult the Branch Lead Support Volunteer before submitting an Application Form. Requests for help with respite care and short breaks and activities should be made to the MS Society Short Breaks and Activities Fund, for which the Branch can offer advice. Where possible, statutory funding, for example from local council or NHS, must be sought before applying to the Branch. Retrospective applications, where the expenditure has been incurred, an order placed, or a deposit paid, before applying to the Branch, cannot be considered. Applications, on the official Application Form, must be sent to the Birmingham Branch. If the Branch is unable to offer the total amount involved, the form may be passed to MS National Centre, for consideration by the National Welfare Grants Fund. There are other conditions, including how much income/expenditure and savings the family has. For more information, in strict confidence, contact the Branch Lead Support Volunteer (0121-246-5876, or text to 07746-130-806, or email to [email protected]). 4 BRANCH ACTIVITIES—COME ALONG AND GIVE THEM A TRY! Art and craft classes. Fortnightly Mondays 11 am - 1 pm. Next meetings 21 October; 4,18 November; 2 December. £3 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 £3 per session. Next sessions: October 19, November 16. There will be no class in December. 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. 5 CARERS CORNER C Help the helpers - is someone caring for you in need of support? arers Together is an exciting new volunteering project, funded by the Big Lottery Fund and delivered by TimeBank and Carers UK. The project offers face-to-face mentoring to 70 carers in Birmingham, plus tailored online support to 300 carers across the country. It aims to reduce social isolation, improve emotional well-being and help carers cope with the stress and strains of caring. Drawing on its extensive experience of volunteer mentoring, TimeBank recruits, trains and supports volunteers who have current or previous caring experience and who would like to act as mentors to other carers. Mentors are able to share their own experience and techniques that have helped them. Carers are matched with a volunteer mentor to help them take a fresh look at their own situations and identify goals .Mentoring enables carers to work through the difficulties they may be experiencing and receive support, as well as signposting to other sources of help. In addition to providing a mentor, Carers Together gives both its mentors and its mentees access to specialist advice around benefits, securing support and legal issues surrounding being a carer. This advice is provided by Carers UK who have a long history of supporting carers across the country. Carers Together doesn't work unless those who have successfully cared for someone volunteer to be a mentor. TimeBank provides volunteer training and covers expenses, and we know that mentors will find mentoring a deeply rewarding experience. Although a carer may not have thought about caring as anything other than something they wanted and needed to do, they actually have a very detailed skills set and knowledge base that someone else could really benefit from! Becoming a mentor is a way to get this recognised as well as an excellent bridge back into work. We are already receiving feedback about how helpful the project is. If you know someone who could give their time, or someone who needs support, please encourage them to contact the project either through the website at www.timebank.org.uk/carers-together or by emailing [email protected]. If they would prefer to speak to someone they can call 0121 236 2531 and ask for Stephen or Halinka. Project Co-ordinator Carers Together [email protected] 6 FOR CARERS and ALL AFFECTED BY MS Need someone to talk to? S pokz People community interest group are a non-profit organisation in Birmingham providing 1 to 1 and group support including sex & relationship support for adults with physical disabilities, partners, carers and parents. You may have seen them at the recent �Below the Belt’ event, where Mel Halacre, their managing director, briefly spoke about how MS can affect sex and relationships. If you are living with MS and would like to get more out of your life and relationships, then their support could help with: Coming to terms with the diagnosis Isolation Relationships and sex Pain or fatigue Self-esteem or body image Confidence and assertiveness skills Being independent Feelings of guilt, anger or resentment Feeling anxious or low Risk taking Dealing with difficult people and situations Pain (we have a pain support programme starting 24th September) Costs: Their online forum and helpline are free. You can also join their Facebook page or follow them on Twitter for free support and updates. The costs for 1-2-1 support varies from £5.00-£40.00 per session depending on your income. Groups are from £3.00-£10.00. Spokz People are partially funded by Birmingham City Council, which means you can access their services at low cost (e.g. £5.00 if you are on benefits) if you pay your council tax to Birmingham City Council. If you are in financial difficulties, and have already reduced nonessentials like tv packages, Spokz may be able to approach your MS Society branch for a contribution. If you have Direct Payments you can also use this to pay for our services. Find out more: Phone 0845 25 77 496, email [email protected] or go to www.spokzpeople.org.uk 7 Booking for Christmas lunch (note new venue this year) SUNDAY 8 DECEMBER 2012, at 1.00 p.m. PLOUGH AND HARROW, HAGLEY ROAD, EDGBASTON, B16 8LS Lunch is £12.50 for two courses or £15.50 for three courses per head – Please select from the menu and complete the form below, enclose cheque (made out to “MS Society, Birmingham Branch”) for the total amount, and send to: Birmingham Branch, MS Society, 399 Heath Rd Sth, Birmingham B31 2BB Bookings must be received by 9th November. Tickets will be posted out early in December. As space is limited this year, they will be allocated on a first-come -first-served basis. If you have any queries please ring (0121)2465876. Please keep a note of your choices and bring it with you! -------------------------------------------------------------------------------------------------No OF PERSONS …......@ £12.50; ………[email protected]. TOTAL PRICE: …................ MENU: please indicate selections & number of people ↓ : Caramelised red onion & Gruyere cheese tartlet, soft salad, mustard vinaigrette ( ) Plough and harrow prawn cocktail, granary bread & butter ( ) Smooth chicken liver parfait, fig chutney & spiced toast ( ) Lightly Spiced Parsley & celeriac sop, Apple & crème fraiche, herb croute ( ) ******************************************************************************* Turkey & pancetta parcel w. apricot & chestnut stuffing, roast gravy Traditional roast beef aged 21 days, yorkshire pudding, gravy Pan-fried fillet of brixham sea-trout, orange braised fennel, white wine & dill cream Smoked aubergine & roast pepper cannelloni, sauce arrabiata ******************************************************************************* Christmas Pudding & brandy sauce Truffled chocolate torte w. blackberry compote & clotted cream Glazed lemon tart, Chantilly cream & raspberry sorbet Selection of local & continental cheeses w. walnut bread & winter ale chutney ************************************************************************** ( ( ) ) ( ( ) ) ( ) ( ( ) ) ( ) Freshly filtered Coffee and chocolate mints NAME: …...................................................................... ADDRESS: …............................................................... …...................................................................... …...................................................................... PHONE NUMBER (in case we need to contact you) …................................... Transport may be available – please phone Chris on 07900-152-666) 8 PANTO PANTO PANTO We have reserved a number of seats and wheelchair spaces for the matinee of Snow White and the Seven Dwarfs at 2.30 pm on Saturday January 25 2014 All seats will be allocated on a first-come first-served basis. Please complete the form below, enclose a cheque (made out to “MS Society Birmingham Branch”) for the total amount, and send to Birmingham Branch, MS Society, 399 Heath Rd South, BIRMINGHAM B31 2BB Applications must be received by 16 November. Tickets will be posted out early in January. If you have any queries, please phone (0121) 2465876 --------------------------------------------------------------------------------------------------------Panto Booking Please state number required ↓ Wheelchair space for person affected by MS + carer’s seat (2 persons) £29.40( ) Seat for person affected by MS plus carer’s seat (2 persons) £29.40 ( ) Seat for non-carer (per person) £14.70 ( ) TOTAL _________ NAME ____________________________________PHONE No. _____________ ADDRESS________________________________________ _________________________________________________ _________________________________________________ Transport may be available: please phone Chris on 07900 152 666 9 FROM THE MS SOCIETY I’ve got nothing to lose by trying it by Sorrel Bickley . T hese days information about our health is all around us and can be accessed easily on the internet. In many ways this is a positive thing, but it can make it more difficult to find reliable facts, especially when it comes to unproven treatments. We often see �amazing benefits’ and �miracle cures’ in the headlines, but how can we get the full story? �I’ve got nothing to lose by trying it’ is a new guide from Sense about Science, which aims to help people find reliable information about unlicensed treatments. It was put together after collaboration with patients, doctors and carers, as well as other medical charities including Cancer Research UK and the Alzheimer’s Society. The MS Society is proud to support this guide, which includes tips about the potential financial, health and emotional costs of untested treatments. Being aware of and understanding the risks involved with unproven therapies is really important for everyone. Specifically the guide:       Gives practical advice to help patients examine the available evidence so that they can weigh up claims and make informed decisions. Explains what to look for in a news story about a medical breakthrough. Explains how clinical trials work. Explains what to look for on any website that promotes a new treatment. Advises on participating in clinical trials. Indicates where to find trusted sources of medical information. Hidden risks We know that many people affected by long term conditions such as MS find it frustrating that available treatments aren’t able to provide the results they want, and that it can be tempting to try out controversial or alternative treatments that promise more dramatic results. But it’s important to look for the scientific evidence behind these claims and to learn more about whether or not these treatments are safe. Alternative therapies can 10 interfere with conventional medicines, and can also carry an emotional cost: many people share their stories of being sold treatments based on �false hope’, which have led to confusion and disappointment. Not to mention that many unproven therapies can be very expensive, with no guarantee that the money is making a difference. The new guide details how to spot information that might be misleading or that makes unfair promises. Rita Baillie, who has MS, told us why this is important to her: “This matters to me because over the last 20 years I have been encouraged to try so many expensive drugs or treatments. I would have done better to have a good holiday. It is hope that makes us grab at straws. We need facts not dreams.” Accessing new treatments There are safer ways to access potential treatments. One option available is to participate in a clinical trial. These can allow people to access new drugs a few years before they might be commonly available. Clinical trials offer a way of effectively testing the benefits and potential side effects of new treatments, and although it often takes number of years for new treatments to be approved, it’s crucial for all treatments to go through this process. Participating in genuine clinical trials never requires making a payment, and more information can be found at the International Clinical Trials Registry Platform (ICTRP). You can also visit clinicaltrials.gov for a searchable list of all clinical trials happening around the world. Arm yourself with facts A guide like this can help people question the information they find, and to make their decisions based on the evidence available. Other reliable information sources include NHS choices (www.nhs.uk) and the UK Clinical Research Collaboration (www.ukcrc.org ), as well as the MS society website (www.mssociety.org.uk). It’s not easy to know what to believe, and everyone’s situation is different. But once armed with the facts and evidence, it’s easier to make the choice that’s right for you. We acknowledge including part of a review by T M Pope of Albany Medical College. 11 If you have internet access … then you might be interested in some of these MS and disability-related links: http:///wwwmsssocietymorgmuk/oorus is an active forum with discussion of all kinds of issues including, but not confined to, everyday living, new diagnoses, caring, and young people. http:///diaryooabenefitscroungermblogsp:otmcomuk/, (the description is ironic) details the activities of a feisty disability rights campaigner http:///disabilityrightsukmorg/ is a registered charity which offers guidance and information on all aspects of benefits and publishes useful factsheets. Their postal address is 12 City Forum, 250 City Road London EC1V 8AF, and their phone number is 020 7250 3222 (line open Mon-Fri, between 10.00 and 12.30pm and 1.30 and 4.00pm) http:s///wwwmgovmuk/browse/disabilities is a government site providing information about your rights, benefits, carers and the Equality Act 12 VOLUNTEERS WANTEDVolunteer jobs available – please apply !! Branch Secretary: Z oe Berry been an excellent secretary for the Branch, but now she has to cut down her activities and so this very important post is open. The Secretary is a key position in the Committee. Responsibilities include organising Committee meetings, circulating agendas, and writing minutes. In between meetings, the Secretary is the main point of contact for other organisations and the MS Society in general, and this involves letters and emails to these external bodies. The Secretary plays a crucial role in keeping contact with members of the Branch, and the Committee, and works very closely with the Chair. Working experience of word processing and emailing is essential. The job is very rewarding, in all sorts of ways, except financial! Branch Telephone Co-ordinator: T he Branch Support Team looks after all enquiries from people affected by MS – e.g. information on Branch activities, requests for help and support, suggestions for help from other organisations, and general non-professional advice. The Telephone Co-ordinator is responsible for answering the Branch help-line, dealing as far as possible with requests and passing on specific enquiries to other members of the Team. We get 10 - 12 calls a week. It is useful if the Telephone Co-ordinator can answer immediately, but there is voicemail for people to leave messages, which can be accessed later. The job might be especially attractive to someone who can be around most of the time, but a mobile is used, for flexibility. A very rewarding job for someone who is knowledgeable about MS and the Branch, or is willing to learn, and who is good at keeping records and passing on information. Again, a volunteer post. 13 RESEARCH NEWS Researchers identify 48 new genes linked to MS R esults of a new study into finding the genes that may increase a person’s likelihood of developing MS have been published today 30 September in the journal Nature Genetics. This is the largest study of its kind to be carried out for MS and involved gathering data from over 38,000 people, including 14,498 people with MS. In total, 48 new genes that show links to MS were identified. By combining this with the results of a similar study from 2011, there are now over 100 genes known to be associated with MS. Links to the immune system Interestingly, most of the genes identified in the study have a role in the immune system. The researchers also found that some of the genes identified are linked to other autoimmune conditions, such as Crohn’s disease and inflammatory bowel disease. The MS Society co-funded the study, which was conducted by the International MS Genetics Consortium (IMSGC), an international collaboration between scientists from across the world. In the UK, the study was led by researchers at the University of Cambridge. Dr Susan Kohlhaas, Head of Biomedical Research at the MS Society, said: “We need to discover as much as we can about the factors that may increase a person’s risk of developing MS if we’re to find new ways of treating or even, one day, preventing the condition. Genes are one of the key risk factors, so we’re delighted to have co-funded this work, which has identified several new avenues for MS research to follow.” DONATIONS AND SUPPORT O T nce again, Mrs. Kumari Lal of Great Barr has sent in the proceeds from the MS collection box in the family shop — a magnificent £355! The Branch is extremely grateful for this continuing support. he collection held at Tescos Spring Hill raised 239.40. Thanks to those who gave up their time to help: Chris Kyne, Laurel McLeod, Graham Bagnall, Wendy Hall, Dan Hall, Patti Parkes, Sandy Lamb, and Stephen Leake. Special thanks to Stephen, who contributed £50 himself as well as collecting from other people! W e are pleased also to acknowledge 14 the kind donation of £100 from Richard and Seana Davies. BRANCH COMMITTEE Laurel Mcleod Zoe Berry Andy Jarrett Baldish Kaur Philip King Chris Kyne Sandra Lamb Sara Leung Verity Milligan Ivon Mouanda Cleo Reid Jane Smith Janet Watts David Whitfield Chair Member Regional fundraiser Fundraiser Newsletter editor and membership secretary Transport manager Member Publicity officer Website editor Assistant treasurer North Birmingham group organiser Lead development support officer Treasurer Support lead Since the last BruMS, Anji Page has stood down as vice chair, and Zoe Berry continues to sit on the committee although she has had to relinquish her role of secretary. Our heartfelt thanks go to them both for their hard work and support. To Zoe a special thanks for involving herself so fully and efficiently in all aspects of the work of the branch and keeping us on our toes! We are now looking for a new secretary see our appeal on p 13. The next issue of BruMS will be out around midDecember 15 16
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