The Birmingham Multiple Sclerosis Society Newsletter Registered Charity numbers 1139257, SC041990 Issue 36 Summer 2013 HOW TO CONTACT US: PLEASE NOTE CHANGE TO THE CONTACT PHONE NUMBER by phone 0121 2465876 ← NOTE NEW NUMBER by email birmingham@mssociety.org.uk 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 H ello, I would like to introduce myself. My name is Laurel McLeod. I am the Chair for the Birmingham Multiple Scleroses Society. I have been in post for about fifteen weeks, and with the support of the Branch Committee and Volunteers I hope to have a positive productive term as chair. This is a new experience for me, so I am still finding my feet as well as learning how the society operates and what my role entails. I would like to take time to welcome the new volunteers to the Branch. I would also like to thank the committee members and volunteers for the hard work they are doing to, raise the awareness of the Branch and for the fundraising activities they are involved in. There is a lot happening within the Branch, which I will leave to Phillip King the editor to update you on. All views expressed are the authors’ & not necessarily those of the MS Society. From the editor T his newsletter comes out rather later than intended, mainly because my 6-year-old computer gave up the ghost while it was in preparation. This meant the purchase of a new laptop. So far, so good (apart from the expense), and they managed to rescue all my old files too. The problem then was that the new computer came with Windows 8 and a whole load of software that was 6 years newer than everything I was used to. So it has been a steep learning curve! Hopefully I am almost there now. A lot has been happening in the branch since I last wrote. Earlier in the year we had attracted a number of new volunteers and helpers, and at the Annual Meeting held in April, a number of them were elected to the committee. The list of committee members is on the back page, and you will see that we now have a wider range of portfolios. This will help to relieve the burden on individuals and enable us to pay closer attention to areas in which we have not been able to work as efficiently as we would have liked. As many of you will know, the branch phone number has changed. The new number is on the front page. What happened was that the phone line needed to be transferred from the house of one volunteer to another. At first we were told that it would be possible to keep the same number, but then that it would not be possible, as different exchanges were involved, and the old number had already been reallocated—to a fax machine, or so it sounded to anyone who rang it. We apologise to anyone who was unable to get through while the change was in progress. There is an addition and a change in the branch activities (pages 4 and 5), Wheels and toes is a new dance activity suitable for wheelchair users as well as others. And the art class has now become the art and craft class. This will have a wider range of activities, and will take place in the Quaker rooms in Kings Heath. If you are interested, please contact Zoe. The next issue should be out by the end of September. We are already planning our traditional Christmas lunch and panto events, and details and booking forms will be included (seems odd to be thinking of Christmas in the current heatwave). We also want to take a look at how the Personal Independence Payments system is beginning to affect people. We hope you are looking after yourselves in this hot weather. Have a good summer! Philip King 2 THE BRANCH HAS A NEW PHONE NUMBER !!! --- at last. THE NEW BRANCH NUMBER IS 0121-246 5876 A s some members will know, we have been 'off the line' for a few weeks, and the Branch has been obtainable only by a mobile number (07746-130-806). It's a long story about the land-line, but the main reason is that we do not have a fixed office, and we have to rely on rented spaces and, on some occasions, volunteers' homes. We do apologise for the break in communication, which was, as they say, beyond our control. But now, we do have a land-line again, and we look forward to receiving calls on 0121-246 5876 This is a good opportunity to remind members and others about the activities of the Support Team, who look after the phone line. The Support Team handles all enquiries from anyone in Birmingham affected by MS. Enquiries may be very general, about Branch activities, or personal, in which case they are dealt with in strict confidence. In some cases (e.g. on benefits), the enquirer is directed to another agency or source of information, where the matter can receive more specialist help. Normally, we get about twenty-five calls a month, and enquiries may come also from professionals such as the MS nurses. Enquiries cover many topics, but in the main are concerned with Branch activities and membership, benefits, transport, practical help, and grants. The Team is the first point of contact for grants to help with home adaptations, equipment, scooters, domestic appliances, education, etc. (Applications must be supported by professional recommendation and details of the applicant's income and expenditure). There is a form to fill in, obtainable from the Support Team. All grant applications are strictly confidential, and are assessed and organised by the Branch Grants Sub-Committee. Grants are available also for short breaks (which might be a holiday break, a regular activity or visit to a day service, respite care, or anything else that gives the person affected by MS the break they need). The Short Breaks and Activities Fund is run by the MS Society National Centre, but the Support Team can supply information and application forms. PLEASE FEEL FREE TO CONTACT THE SUPPORT TEAM FOR ANY HELP phone: 0121-246 5876 text message: 07746-130-806 email: birmingham@mssociety.org.uk 3 BRANCH ACTIVITIES—COME ALONG AND GIVE THEM A TRY! Art and craft classes. Fortnightly Mondays 11 am - 1 pm. £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 (cleo.reid@sky.com) or any of the addresses on the front page. Tai Chi exercise classes. Third Saturday in the month. 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 are on 20 July, 21 September. and 19 October NOTE: there is no class in August. 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 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 Birmingham_chums@live.co.uk 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. 4 BRANCH ACTIVITIES NEW ACTIVITY: WHEELS and TOES Z oë has been working with a local group called Wheels and Toes who have kindly agreed to work with the branch to provide dance sessions. Wheels and Toes are an inclusive dance group for both wheelchair and non-wheelchair users alike. The group offers sessions in many styles including contemporary, folk, historical, line, sequence and ballroom. So if you like flexing your dancing feet come along and enjoy a spin around the room. All abilities are encouraged and full tuition is on offer. The session is open to all branch members, friends and family. You don't need to know how to dance in order to have fun, just come and give it a go. The first session will be held on Wednesday 31st July at The Quaker Rooms on Colmore Road in Kings Heath from 2pm until 4pm. Tea and coffee will be provided and the branch asks for a £3 donation. If you have any questions please don't hesitate to contact Zoë via e-mail (dollhead69@hotmail.com) or phone (0 247 3892.7891240627). Please come along if you can, and if anyone would like to volunteer to help out at the session please let Zoë know as we'd love to have you. W e will be fundraising at Tesco’s at Spring Hill, Hockley, on 22 August 2013, and we need your help. If you can spare any time between 9am and 6pm to help us raise money and awareness by shaking (silently!) tins and having a smiley face, please come along and join us. If you can come, or would like more information, please contact Sandy Lamb on 0121 242 6836. 5 M NEWS UMS UK is a support group for mums and mums-to-be with Multiple Sclerosis. “We are an online group who discuss all areas of pregnancy and parenting whilst travelling together on our MS journeys. If you have been diagnosed or are under investigation for Multiple Sclerosis and are a mum, mum-to-be, or planning on starting a family, then please join MUMS UK on Facebook or contact us on mums_uk@aol.com.” M eddy Ranks started his musical career in Jamaica, and is now a local and international reggae artist, song writer and producer living in Birmingham He has promoted and raised funds for a number of good causes in this area, including an event for the Citizens Advice Bureau which received wide publicity locally and nationally. He will be publicising the MS branch at various gigs, so look out for his name. SUPPORT FOR SHORT BREAKS The Good Care group have, in collaboration with the MS Society, developed a new home respite and holiday care service for people with MS. The group’s professional carers have been receiving specialist training about MS from the Society. How it works Following an assessment, clients purchase a week of care. This can be taken all at once, or split into two shorter periods of 4 and 3 days over a period up to 6 months. The care can be provided at home or away (i.e; in accessible accommodation). The service is available as either a live-in basis across England and Scotland or a holiday service that enables you to take a carer with you wherever you go in the UK or overseas. For more information or to discuss your specific needs you can contact The Good Care Group on 08000 234 220 or enquiries@thegoodcare group.com or see their website at www.thegoodcaregroup.com/ms The MS society’s Short Breaks and Activities fund can provide grants for costs relating to short breaks and holidays with care. Call 020 8438 0700 and ask for a member of the grants team or email grants@mssociety.oreg.uk to find out more. 6 News from the MS Society T he Government has announced it will review a recent decision to change mobility criteria for Personal Independence Payment (PIP). The u-turn means people with MS, and other disabilities, will be able to raise their concerns at changes which would cause large numbers of people to miss out on fundamental support. Devastating changes The move comes after the MS Society and 50 other charities which form the Disability Benefits Consortium (DBC) voiced concerns that the strict mobility criteria for PIP would have a devastating impact if it wasn’t reviewed. The DBC highlighted that if people can walk 20m – even using aids such as sticks – they wouldn’t qualify for the enhanced rate of the benefit, and could lose up to £1,800 a year or their Motability vehicle. Many people rely on this to maintain their independence and live their daily lives. Positive step forward Claire Nurden, Senior Policy and Campaigns Officer at the MS Society and CoChair of the DBC said: “We are extremely pleased that the Department for Work and Pensions has decided to review this vital area of the PIP benefit. It’s a crucial opportunity for the MS Society and people with MS themselves to highlight the potentially devastating impact this policy could have on people with the condition. "If the policy is changed as a result of this consultation, it will be a positive step towards ensuring that all people get the right access to vital support in order for them to retain their independence and everyday way of life.” Help change policy If you think you‘ll be affected by the 20 metre rule, either through loss of the upper rate of the mobility component of DLA or the loss of a Motability vehicle, we want to know about it. Please email campaigns@mssociety.org.uk who will tell you how you can get involved in the campaign. The sooner you get in touch the better as the consultation ends on Monday 5 August. Groundbreaking clinical trial for secondary progressive MS A new phase 2 clinical trial called MS-SMART will begin this autumn, investigating whether three potential treatments could slow or halt disability progression in people with secondary progressive MS MS-SMART is a three-year trial that will test the safety and effectiveness of three different drugs - amiloride, ibudilast and riluzole – against a ‘dummy’ treatment in 440 people with secondary progressive MS. All three drugs have the potential to protect nerves from damage, which could ultimately stop or slow disability progression. 7 8 SUPPORT AND DONATIONS M S Nurse Dawn Brookfield will be known to those of you who attend City Hospital. She decided along with her sister Carly to do the June Great North Swim in Lake Windermere, in memory of two of her patients, to raise funds for MS. Dawn wrote soon after, “I survived, despite gale-force winds & v big waves. Conditions were so bad I thought I might have to concede defeat at the 200m buoy, as I couldn’t get my breathing sorted. Suddenly got into my zone & managed to plough on. Surprisingly only bit which aches is my face, as I couldn’t stop smiling manically I was so elated to have done it.” Our congratulations to Dawn and her sister for courage in the face of adversity! L aurel Mcleod, our branch chair, is seen presenting Marie Sorroll with a bouquet of flowers and a certificate for the outstanding success of the Zumba fitness classes. The branch would also like to thank Marie for the tremendous £15.000 and counting which she has raised in memory of her sister who had M.S. Marie’s successful Zumbathon was reported in our last edition. W e have also received the following donations: Wendy Hall, who donated £160 on the occasion of her mother’s 100th birthday; Mr RJ Davies, of £100; Phoenix, of £760; Mr and Mrs Hall, of 260; Mrs Placentino, Mrs Giddo, Mrs Masood, of £10 each; Mr and Mrs Roden of £40, GWC and MPV Sardi of £4550. HCB solicitors, who raised £70 from their cake break. The branch would like to thank all fundraisers for their continuing support. 9 10 11 Other resources Ref Title Format CC01 Can't wait /help card Credit card CC02 MS Assistance card Credit card GI25 Exercising with MS DVD LF08 National support groups at the MS Society A5 leaflet LF10 Financial assistance from the MS Society A5 leaflet PP01 MS Society information for carers A5 leaflet Branch General Meeting 2013 T he annual branch meeting was held at Cocks Moors Leisure Centre on Friday 19 April this year. A new committee was elected as follows. Andy Anji Baldish Chris Cleo David Jane Janet Laurel Philip Sandra Sara Verity Zoe Ivor Jarrett Page Kaur Kyne Reid Whitfield Smith Watts Mcleod King Lamb Leung Milligan Berry Mouanda Regional Fundraiser Vice Chair Fundraiser Transport Manager North Birmingham Group Organiser Support Lead Lead Support Development Officer Treasurer Chair Newsletter Editor / Membership Secretary Committee Member Publicity Officer Website Editor Secretary / Lead Volunteer Co-ordinator Committee member As you can see, a number of new volunteers have come to join us, which is very good news, and the committee has been considerably strengthened. Due to the state of his health, Dan Hall is unfortunately unable to serve any longer. We thank him for his work for the branch and wish him well for the future. We are also grateful to Ian Cook for his years of support for the branch and for running the website and e-letter, who has resigned due to other heavy commitments. 12