All views expressed are the authors’ & not necessarily those of the MS Society.

HOW TO CONTACT US:

by phone 0121 2465876

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

The Birmingham Multiple Sclerosis Society Newsletter Registered Charity numbers 1139257, SC041990

Issue 39 Spring –2014

F irst of all, a reminder. Some members have not renewed their subscriptions for 2014. If this applies to you and you wish to continue

receiving BruMS and MS Matters, please do so. To communicate with you we use the membership list provided by the Society, which is updated every month. If you drop off this list, we are not able to contact you or inform you of events.

You will see from the extended list of committee members that we have over the past few months recruited a number of keen volunteers. We welcome them on board and look forward to developing a strengthened branch. In the immediate future we need people to come and help with fundraising collections at Tescos (see back page) We are looking for people who would like to help form a choir (no previous experience necessary!) - see page 2. This edition of BruMS comes out too late to advertise the Pilates session which was held on the 14th, but we hope that it will be possible to hold more (a brief note is on p11).

If you use any kind of devices to assist you in everyday life, then Bangor University is conducting research into their usefulness. The details are on p6. We like to encourage members to take part in trials and surveys because the information gained will help you or other people with MS in future.

Finally, may I draw your attention to the Annual Meeting, at which you can stand for office, hear a report on the year and give your opinions. Pages 7 and 8 contain full details. The Editor

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Would you like to help us raise awareness of MS?

T he MS Society is running a pilot project throughout 2014 to recruit and train volunteers to give talks to local community groups.

We are looking for your help!

Would you like to volunteer to become an MS Ambassador in the Birmingham area? You would join a small team of volunteers and we will offer you a short training session, some materials to help with talks, support in the role and travel expenses. We will also arrange the talks for you so all you would need to do is turn up on the day with information about MS and be prepared to give a short talk. Ideally, each volunteer will do around 5 talks during the year but there may be opportunities to do more if you would like to. You will see from the list of committee members that we already have a small core of such volunteers.

This is a great opportunity to raise awareness of MS, the support available to the MS Society and help us to raise funds to enable us to do even more to support people affected by MS.

Or perhaps you are a member of a local group that might like to have a talk about MS and the MS Society. If so, we’d be delighted to hear from you to arrange a talk.

To find out more about volunteering or if you know of any groups that might be able to offer a talk contact Jo Keller, Senior Volunteer Development Officer for the MS Society on 020 8438 0855 or Jo.Keller@mssociety.org.uk

Or would you like to sing?

T here will soon be a great opportunity to be part of a choir for the MS Society's Birmingham Branch, who aim to do fun

events at different times throughout the year, as fund raisers, while aiming to raise the profile of the society.

The choir will be fully inclusive, meaning no auditions or ability to read music necessary, just enthusiasm, a willingness to participate & to have fun. It will be led holistically by an experi-enced natural voice practitioner who will input voice coaching with extensive voice care with relaxation, through the vehicle of 'Singing for Health & Wellbeing', that will benefit people with MS also their family, friends & carers - all are welcome! If you feel inspired by this prospect, please register your interest with Sandra Lamb. Her email is: birmingham@mssociety.org.uk or mobile 07758 24 94 76 & please feel free pass the good news around.

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BRANCH ACTIVITIES—COME ALONG AND GIVE THEM A TRY!

Art and craft classes. Weekly 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

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 Saturday April 19, Saturday May 17, Saturday June 21. All classes start at 2.00 pm. If you have any queries, please contact Eileen on 07930699757.

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 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. Note: We are sorry to have to announce that the North Birmingham exercise class has been suspended due to illness.. We wish Cleo, who has put so much work into this group, a good recovery.

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INFORMATION FOR CARERS

Carers Week is a UK-wide annual awareness campaign which takes place from Monday 9 to Sunday 15 June 2014. Its aim is to improve the lives of carers and the people they care for.

It does this by raising awareness of carers at a national, regional and local level. Hun-dreds of organisations and individuals join in each year to make it one of the UK's most successful awareness campaigns. More information is available at www.carersweek.org

BIRMINGHAM CARERS CENTRE 76-78 Boldmere Road, Sutton Coldfield, B73 5TJ Helpline: 0121 271 0808

Meditation and Yoga A charity is offering free monthly Mantra meditation in Central Birmingham. For details please contact them at http://www.meetup.com/Mantra-Meditation-Yoga-Birmingham

The Carers Centre provides regular weekly outreach services across the city and you can book an appointment with an advisor at the following venues:

The Norman Powers Centre, 14 Slapton Road, Ladywood, B16 8JJ Mondays and Thursdays, 9 am—5 pm

The Kenrick Centre, Mill Farm Road, Harborne, B17 0QX Tuesdays, Wednesdays and Fridays 9 am—5 pm

The Perry Centre, Dovedale Road, Kingstanding, B23 6BX

Tuesdays, Wednesdays and Fridays 9 am—5 pm

The Ann Marie Howes Centre, 20 Platt Brook Way, Sheldon, B26 2DU

Mondays, Tuesdays and Thursdays, 9 am-5pm

Phone 0121 271 0808 to make an appointment for any of these centres.

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G et together with your friends, family and colleagues, provide them with plenty of

cake and watch the donation box fill up! You can host your Cake Break at home, at work, at school, anywhere you like! When is Cake Break 2014? The official date for Cake Break is Friday 2 May, but you can hold your event whenever you like. How do I register for Cake Break? There are lots of ways you can register Register online at http://cakebreak.org.uk/register/ From your mobile: Text ‘CAKE’ followed by your name to 82727 (texts cost your standard network rate)

By phone: 0845 481 1577 What is in the Cake Break pack? Your Cake Break pack contains everything you’ll need to help organise a fun-filled event, including top tips, posters, invitations, bunting and much more! You can also find more online, including recipes, e-invitations and stories from other Cake Breakers. How do I pay in my donations? You will find a donation form in your Cake Break pack with details of how to pay in your money. You can: Send a cheque made payable to the MS Society to FREEPOST CAKE

BREAK Pay over the phone with a debit or credit card, call 020 8438 0889 Pay online Give your donation to your local MS Society branch

How do I order more balloons and materials?

If you need more materials for your event contact the Cake Break team.Email cakebreak@mssociety.org.uk or call 0845 481 1577.

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CAN YOU HELP WITH RESEARCH?

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T he Annual Meeting of the branch will be held at Cocks Moors Leisure Centre, Alcester Road South, B14 6ER on Friday May 16 at 1.00

pm after the exercise class.. Car parking is available and the venue is accessible. The meeting provides an opportunity to review the activities of the past year, discuss branch matters and future plans. It is important that as many members as possible come along so you can all feel involved.

You can apply for any of the committee posts except chair (which has a 3-year tenure). See page 11 for a list of posts and current holders. Or if you are able to give some time and help, you can just stand for election as a member of the committee, indicating in your pen portrait an area where you would like to make a contribution to the work of the branch.

Further details of all roles can be obtained by calling the contact number on the front page or from the branch volunteer role descriptions section of the MS Society website.

We would also welcome resolutions concerning branch activities.

All nominations and resolutions must be seconded and returned to the address on the front page by 25th April. Please use the form overleaf. You may submit a pen portrait of no more than 200 words to support your nomination. You may submit a resolution address of no more than 200 words.

Every individual who has paid their subscription for 2014 is entitled to vote in elections and on resolutions. NOTE: Only those members whose subscriptions are current can stand for office.

If you are unable to attend the meeting and wish to vote, a postal voting form is obtainable from the branch address. Please use the tear-off provided to request this by 5th April

The agenda for the Annual Meeting along with any nominations and pen portraits will be circulated to members soon after April 25th. SEE NEXT PAGE IF YOU WISH TO SUBMIT A RESOLUTION OR MAKE A NOMINATION. IF YOU ARE CUTTING OUT THESE TWO PAGES TO SEND IN, PLEASE DON’T FORGET TO MAKE A COPY OF ALL IMPORTANT INFORMATION!

GENERAL MEETING 2014

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I wish to stand for the position of ___________________________ This is seconded by ___________________________ (please sign) My pen portrait is as follows: I wish to submit the following resolution: This resolution is seconded by ___________________________ (please sign) I wish to be sent a postal vote (Please tick to request) ___________ Name: Address: Telephone: Email:

Please return to the postal address on the front page to arrive by 25th April

GENERAL MEETING 2014 page 2

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The switchover from DLA to PIP (Personal Independence Payment) is now gathering pace. New

publications from the MS Society give helpful information:

PIP – two new resources available For people making a new claim, or being reassessed

Claiming Personal IndependencePayment (PIP) (First edition, October 2013). This 52 page booklet has information about claiming PIP, the benefit that has replaced Disability Living Allowance (DLA). It includes a question-by-question guide to filling in the ‘How your disability affects you’ form and an insert listing all the descriptors used by the assessors.

For people who currently claim DLA

Changing from Disability Living Allowance (DLA) to Personal Independence Payment (PIP) (October 2013). A four page factsheet that explains the process of switching over from DLA to PIP. Both of these resources are available to download or to order. Visit the MS Society’s online shop at http://shop.mssociety.org.uk. OR phone 0300-1000-801 or 020-8438-0901

PIP roll-out: problems from beginning to end

The roll-out of Personal Independence Payment (PIP) has continued to experience heavy backlogs and delays, according to a recent report from the National Audit Office (NAO). The Public Accounts Committee has examined how far things have progressed. Discussions have revealed that problems are being encountered from beginning to end of the process.

Not fit for purpose

Michelle Mitchell, Chief Executive of the MS Society, said:"It’s clear from the PAC hearing that the PIP process is not currently fit for purpose, and that the blame lies at the door of both the gov-ernment and the assessment providers, Atos and Capita. It’s inexcusable that disabled people are being used as guinea pigs in a process that doesn’t work."

Hardship and isolation

"The Government failed to properly consider the impact its reforms would have, and this has re-sulted in unexpected costs and extreme financial hardship for those affected. Some people with MS are waiting up to six months for their PIP application to be processed, leaving them at risk of isolation and unable to access the support they need, such as transport to hospital appointments, wheelchairs or help around the home. Many tell us the delay in accessing PIP is preventing them, their carers and families accessing the other benefits they need, like Carers Allowance and the Blue Badge."

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Secondary progressive MS:

researchers discover potential treatment, simvastatin

RESEARCH NEWS from the MS SOCIETY

Research published in the Lancet has confirmed high doses of simvastatin – a cholesterol lowering drug – might slow progression in people with secondary progressive MS.

These are the first clinical trial results in recent years to show a drug could be beneficial for peo-ple with secondary progressive MS. There are currently no treatments available that can slow or stop disability progression in people with a progressive form of the condition.

The results

The phase 2 trial involved 140 people with secondary progressive MS: 70 took the drug for two years, and their results were compared to 70 people who took a dummy (placebo) treatment. Those taking simvastatin (80mg per day) showed:

a significant reduction in the rate of brain atrophy (brain shrinkage) over two years better end-of study EDSS scores (a scale measuring disability levels)

better end-of study MSIS-29 scores (a scale used to measure the impact of MS on some-body’s day-to-day life)

The researchers reported that high dose simvastatin was well tolerated, but tests in larger groups of people with MS will need to be carried out to further validate its safety and effectiveness.

Further trials crucial

Dr Susan Kohlhaas, Head of Biomedical Research at the MS Society, said: “There are no treat-ments that can stop the condition from worsening in people with progressive MS. Scientists have worked for years to find a potential treatment that could help people, and now, finally, one has been found. This is very exciting news.

“Further, larger clinical trials are now absolutely crucial to confirm the safety and effectiveness of this treatment, but for now, people with MS should be really encouraged by these results.”

The discovery was initially announced at a scientific conference by Dr Jeremy Chataway over a year ago; but the results of his study have now been further scrutinised by the scientific commu-nity and published in a peer reviewed journal.

Progression a priority

Finding treatments to help people with progressive MS is the top research priority for the MS Society and the focus of the global research community.

Read more about what we are doing to tackle progression in the spring 2014 issue of Research Matters.

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BR

AN

CH

CO

MM

ITT

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Laurel Mcleod Chair

Tracey Bath Secretary

Zoe Berry Member

Titilola Ajayi Lead Support development officer

Carol Bhalla Branch Ambassador

Peter Hodkinson Branch Ambassador

Andy Jarrett Regional fundraiser

Doreen Katusiime Health and Safety Officer

Baldish Kaur Fundraiser

Philip King Newsletter editor and membership secretary

Chris Kyne Transport manager

Sandra Lamb Member

Sara Leung Publicity officer

Verity Milligan Website editor

Sophie Minor Lead Young People Coordinator

Ivon Mouanda Assistant treasurer

Cleo Reid North Birmingham group organiser

Jane Smith Lead development support officer

Carol Townsend Telephone coordinator

Denise Wainwright Information coordinator

Janet Watts Treasurer

David Whitfield Grants committee

Yushi Zhang Fundraiser

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. We have already run a free pilot trial of the Pilates system, for people affected by MS. If you are interested in taking part in regular classes please let us know what days and times would suit you, and your level of mobility. 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 - birmingham@mssociety.org.uk

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