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No. 185 October 2012 Teamspirit

For branch officers and national support group committee members

Welcome to the October edition of Teamspirit.

Contents

Page 2 Branch and national support group donations Page 3 News and events Page 8 Research Page 9 Support Page 12 Finance Page 13 Fundraising Page 17 For England Page 20 For Northern Ireland Page 22 For Scotland Page 26 For Wales Page 27 Classifieds Back page Directory

Don’t forget – the information in the first six sections is for everyone , wherever you are in the UK.

Get in touch

We’re always keen to hear your feedback, so if you have any comments, suggestions or ideas email [email protected] , phone 020 8438 0928 or write to Teamspirit, MS Society, 372 Edgware Road, London NW2 6ND.

If you’re a newsletter editor, email [email protected] to receive a version of Teamspirit that you can copy and paste into your branch or regional newsletter.

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Branch donations

Branch or group Description Earmarked Research

Chesterfield & District Cambridge Myelin Repair 2011-2015 £4,000.00

Clydebank & District £1,500.00 Derby Information Cambridge Myelin Repair 2011-2015 £3,000.00 and Support Centre Dumfries & District Stem Cell Research £2,500.00 Dumfries & District Cambridge Myelin Repair 2011-2015 £2,500.00 Hull Beverley Borough Cambridge Myelin Repair 2011-2015 £5,000.00 & Holderness Lincoln & District Cambridge Myelin Repair 2011-2015 £3,000.00 North Cornwall & Cambridge Myelin Repair 2011-2015 £500.00 West Devon Peebles Edinburgh Centre for Translational £3,000.00 Research Grant Shrewsbury & District £10,000.00 South Devon Cambridge Myelin Repair 2011-2015 £500.00 Wakefield & District £3,000.00

Totals £24,000.00 £14,500.00

These are donations recorded 20 July to 14 September 2012.

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News and events

• The financial health of the MS Society Chief Executive’s was reported to be good, with a lower than post-Board report budgeted deficit for the first half of 2012. (15 September 2 012) Annual Plan and Budget The Board were provided with a presentation Welcome to this update on key aspects on the draft plan for 2013 to 2015, and the from the work of the MS Society’s Board budget for 2013. A discussion was held; of Trustees following its meeting on comments from the Board were noted and 15 September 2012. This meeting took place will be reflected in the final plan and budget prior to the AGM 2012, at the Marriott Hotel which will be submitted to the Board for Regent’s Park, London. The full Board papers consideration in December. are available on the MS Society’s website at www.mssociety.org.uk/ms-resources/ Next Board meeting agenda-board-meeting-2012-september The next meeting of the Board will be held at Regular reports MS National Centre on Thursday 6 December 2012. If you would like to attend as an Key features in the Chief Executive’s update observer please contact Rebecca Hawkins, to the Board and the latest management Chief Executive’s Office Administrator, accounts were: at [email protected] or • The MS Society is working with the 0208 438 0700. The key issues for discussion Department of Work and Pensions and a at this meeting are likely to include: number of other organisations to design • Updates from Committees of the Board and trial an alternative assessment for Employment and Support Allowance, • Annual plans of nation Councils to improve the process for people with • Plan and Budget (2013 -2015) fluctuating conditions. The MS Society also responded to a consultation on the If you have any comments or assessment process for the Personal questions please contact me at [email protected] Independence Payment. or write to me at MS National Centre, 372 Edgware Road, • Carers Week 2012 was extremely London NW2 6ND. successful, with over 1,900 organisations taking part and 9,000 local events Thank you for your work and support of recorded. Approximately 62 MS-related our efforts to provide the best outcomes local events took place during Carers Week . for people affected by MS. • The annual report and accounts for Yours sincerely, 2011 have been published and are Simon Gillespie available on the Society’s website Chief Executive www.mssociety.org.uk/ms-resources/ September 2012 annual-report-and-accounts-2011-0 .

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News and events

withdraw the treatment from the market Closure of the in order to raise its price. Independent Beyond clinical trials, around 250 people in the UK are currently taking alemtuzumab, Living Fund which is taken once a year by infusion in The Government has issued a consultation hospital. Although the product does not document stating that the Independent yet have a licence for use with MS, small Living Fund (ILF) will close by April 2015. numbers of patients have been prescribed Everyone currently using the ILF will have the drug on compassionate grounds. to be re-assessed by their local authority Researchers reported promising clinical trial social services department. results earlier this year for alemtuzumab, The MS Society is trying to determine how showing it to be more effective than beta many people with MS will be affected by interferon in reducing relapses and disability this change and what it will mean to them. progression in some people with MS. The trials also showed the treatment If you have ILF funding please complete our resulted in more unwanted side effects questionnaire. This is available online at: than current therapies. www.surveymonkey.com/s/msstories Genzyme, the makers of the medicine, are If you would prefer a paper copy applying to the European Medicines Agency of the questionnaire please contact for a UK licence for the drug. In order to the MS Society at: Email: raise the price of the treatment they have [email protected] to withdraw it from the market for seven Tel: 020 8438 0757. to 10 months, meaning some people with MS may see their treatment stop. New MS drug It’s our sincere hope that people with MS will not be affected by this re-pricing reports positive process and that they can continue on results, but the treatment while it’s withdrawn. The MS Society has encouraged the temporarily company to do all it can to ensure that withdrawn treatment centres have the stocks they need. We have also encouraged the Makers of a new drug for people with pharmaceutical company, Genzyme, relapsing-remitting MS have reported to ensure that if alemtuzumab is granted they are applying for a licence for the a licence they price the treatment medicine, alemtuzumab, to be available on responsibly and provide an access scheme the NHS – but in doing so will temporarily for all those currently being treated.

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News and events

• Developing and delivering a new ‘Update Changes to Service’ by early 2013. This service disclosure checks should allow people to transfer checks between jobs and roles and reduce the in England and need for repeat applications Wales As and when we receive further information from government about these changes, The Government has been working on we will include updates in Teamspirit and reforming criminal records checks (known on our website. as disclosure checks in England and Wales). For further information contact: The first set of reforms came into effect in September. • England and Wales – the Volunteering Officer on 020 8438 0944 or email To help understand responsibilities around [email protected] disclosure checks we have enclosed an • Northern Ireland – the Development updated guide for committee members in team at the Resource Centre on 0289 these two nations in this issue of Teamspirit. 0802 802 or [email protected] An entirely different scheme runs in • Scotland – the Volunteer Development Scotland and different processes are Manager on [email protected] in place in Northern Ireland. or the Executive PA on Changes from September 2012: [email protected] or call • A new definition of who must have and/or 0131 335 4050 is eligible for a disclosure check (this definition is known as regulated activity) Carers Week this • Those under 16 years of age will no longer be able to apply for a disclosure check year and next Full details on which MS Society volunteer This year during Carers Week a report, roles require a disclosure check is included In Sickness and in Health, identified that in the enclosed guide. the UK’s 6.4 million carers are buckling Forthcoming changes under the strain of caring. The Government has announced that further To raise awareness about the issue over changes will be introduced at the end of this 9,000 events took place around the UK. year and early 2013. They include: If your branch or support group held or • At the start of December 2012, the participated in any Carers Week activity Criminal Records Bureau (CRB) will merge this year, we would like to know how it with another organisation (the ISA) to form went, especially if it has led to partnerships one new organisation – the Disclosure or collaborations. We also want to know and Barring Service (DBS)

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News and events

your thoughts on what more we can do • Promoting MS Society information to make sure Carers Week is successful and support. Order a resource list of the in 2013. support and information offered from Natalie Pink on [email protected] Please contact Natalie Pink, Carers or 020 8438 0805. Programme Coordinator, to let us know your thoughts on this year’s Carers Week, please call 020 8438 0805, or email The Hardest Hit [email protected] campaign is back

We are at a turning point. The Government Carers Rights is making crucial decisions on welfare Day – Friday reform, and where the axe will fall to make future cost savings. That's why from 30 November October 20 – 28 disabled people, carers, and the organisations that represent them, This year’s Carers Rights Day will take are coming together to send a message to place on Friday 30 November. The theme – Government: get it right for disabled people. ‘Getting help in tough times’ focuses on With the right support, people with helping carers find financial help. Each year MS can live fulfilling lives and make a Carers UK organises Carers Rights Day to: valuable contribution. Getting decisions • Increase the uptake of benefits about Personal Independence Payment and • Make sure carers know their rights Universal Credit wrong will not only deny • Guide carers towards practical support people this right, but could have major financial costs to the Government. • Raise awareness of the needs of carers It's easy to support the campaign: Each year over 700 local groups across • Spread the word – use your branch the UK run events to support local carers, newsletter or website, use social media from coffee mornings to advice sessions and tweet @hardesthit or speak to your and information stalls. You can help make neighbours a difference by: • Attend a Hardest Hit event – find an • Organising an event: You’ll receive a event near you, campaign marches free organisers' pack with tips and and meetings with MPs, at event suggestions with template press www.mssociety.org.uk/events releases to send to your local media • Contact your MP – visit their constituency and newsletter articles when you sign up surgery or write to them to have your say at www.carersuk.org/get-involved/ carers-rights-day Find out more at www.mssociety.org.uk/hardesthit or • Attending Carers Centre events. contact [email protected] or Find your local centre at www.carers.org 020 8438 0700 if you want to get involved.

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News and events

For a list of all our key publications showing New editions from the latest editions and revisions visit the the MS Society website: www.mssociety.org.uk/resources (or search with the phrase ‘key Diet and nutrition (MS Essentials 11). publications’). Fourth edition August 2012 There are many claims made about how diet Health and can help manage MS, but it can be hard to know what evidence backs up these claims. Safety: Risk This booklet looks at existing evidence, to help develop a healthy diet. Please recycle Management all old editions of these booklets. Review Sample copies of the publications list were sent to all MS Society local branches When the volunteer risk management in September. If you would like copies system was launched we promised to of this title, visit our online shop at review its success. This review has started http://shop.mssociety.org.uk . and branches with property or who have If you need a login for bulk orders please completed the fitness and events systems contact the Information Team: email in 2011 were sent questionnaires, to [email protected] or call consider whether changes or improvements 020 8438 0799 (weekdays 9am-4pm) can be made to the system. or call the orderline 0300 1000 801. The Risk Management Review Group would like to thank all volunteers who Oral health factsheet . Second edition completed the questionnaire in September. September 2012 (download only) . The responses will be used to help the Multiple sclerosis doesn't directly make group to analyse and improve the current you more likely to get dental problems systems, make recommendations where than others. But it might make it harder to necessary and carry out changes in 2013. maintain good oral hygiene or get dental The review will also consider responses treatment. However, there are often ways from staff and compare our system with to work around these issues, some of those used by other organisations. which we describe in this factsheet. For further information about the Download from our website: review please contact Jo Duffy at http://www.mssociety.org.uk/ [email protected] or call ms-resources/oral-health-factsheet 0208 438 0700. (or search ‘oral health’).

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Research ‘My MS, My Needs’: come. Participating is easy, the questionnaire takes 15-20 minutes Understanding the to complete. needs of people If you have any questions regarding this project please contact the research team with MS in the UK at [email protected] or on 020 8438 0822. Early next month we will be launching one of our largest ever surveys, to help us understand how well the UK is meeting Help the the health and social care needs of people MS Society set with MS. We will be posting a short questionnaire future MS research to all of our members who are over 18 and priorities have MS – that’s around 24,000 people – to ask if they are able to access the care The MS Society is leading a new project and support they need. to put people affected by MS at the Why take part? centre of setting research priorities. Through this project we hope to find the top By responding you will be helping us 10 unanswered questions in MS research. understand your MS and your needs. The results will allow us to campaign for People affected by MS, MS professionals change and work to develop services that and neurologists will identify the questions better meet the needs of people with MS. and set the research priorities. This could include any area of MS, from treatments We will be announcing the results of the for a particular symptom to support for project during MS Week next year, and as day-to-day life with MS. well as a national picture we will analyse results locally to understand the ‘postcode This new priority setting partnership is lottery’ in services for people with MS. supported by the James Lind Alliance, This information will be crucial in helping an independent, non-profit organisation. us understand local issues, and work with They specialise in bringing patients, carers local health and social care organisations and health care professionals together to improve services. to identify and prioritise unanswered questions. They will guide this work Because we want to analyse the results to ensure an unbiased result. locally, it is essential that we get a large response. This makes our results more The survey which takes 10-15 minutes to accurate, and allows us to make a more complete is an opportunity to ask questions persuasive case for change. Everyone’s important to you which could help steer response matters – and will be used to future MS research. Take part in our survey support the Society’s work for years to at www.mssociety.org.uk/JLA .

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Support

In October 2012 we will be interviewing for a MS Support new post in the Care and Support Services update Team – Programme Lead MS Support. This role is essential for the development MS Support refers to the UK-wide support of MS Support. delivered by local volunteers, mostly organised in MS Society branches. UK Volunteer The new arrangements for MS Support were piloted in the West of England during Opinion Survey – 2009/2010 and following peer review in 2011 are being rolled out across January 2013 the UK during 2011-2014. In the last edition of Teamspirit we told This year we have delivered 61 training you about plans for a volunteer survey this events and 211 volunteers have been November. We have now decided to launch trained leading to a total of 469 support the volunteer survey at the start of our volunteers across the UK. This includes 60th anniversary year while our important 120 newly recruited support volunteers survey ‘My MS, My Needs’ runs in and 349 existing volunteers who have November (see page 8). taken up the role of support volunteer. So, to kick-off our 60th anniversary There has been ongoing training provision celebrations we will be asking you, all for those in the West of England who our volunteers, about your experience participated in the pilot, with 14 further with the MS Society. training events and 58 support volunteers Your views will influence the support we attending this year. offer in the future and how we develop Feedback from training events so far has volunteering roles in the MS Society. been positive, with more than 85 per cent You will be able to complete the survey rating the day as either good or very good. by email, post or through a web link. This will happen in January 2013. Supporting the development The results will be published in March. of local MS Support teams For more information contact the The main focus of the work so far has been volunteering team on 020 8438 0944 or to develop support teams and provide a email [email protected] new four day learning and development programme to ensure consistency across the UK. Our priority will be to work with local staff and volunteers to develop local support forums.

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Support

and southern England where breaks Open day for MS should be for a minimum of two nights. Society volunteers More information is available about locations and services provided in a The MS National Centre Open Day in brochure which can be ordered by London is on the 27 November . It is an phone on 020 8438 0805 or email opportunity to learn about the work of the [email protected] . To book a MS Society, meet staff and other volunteers, supported short break, speak to your local hear about activities happening across the Crossroads Care scheme. Find them at charity and discuss issues important to you. www.carers.org or phone 020 7922 7741. All MS Society volunteers are invited so please spread the word. Refreshments will Sue and Phil’s short break story be provided from 10.30am and a buffet Sue and Phil live in Gateshead. Sue has lunch will be available. primary progressive MS, uses a wheel- Travel expenses should be claimed chair and needs a hoist for transfers. from your branch or support group. Phil is her husband and full-time carer. To attend or discuss financial limitations, In the past, to give Phil a break, Sue please contact the volunteering team by stayed at a local residential care home email [email protected] or twice a year. What the couple wanted phone 020 8438 0944. was to spend a week together in Wales. Their Crossroads holiday made this Supported possible. After a visit to assess Sue’s needs, Phil and Sue confirmed their short breaks by holiday dates at an accessible cottage in Snowdonia equipped with a mobile hoist. MS Society and As this stay replaced a week in a local care home the break was covered by Carers Trust Sue’s personal budget from her local social services department. People with MS in England and Wales can access care and support during their Crossroads’ service meant Sue’s short breaks and holidays, through the assessment was passed to Crossroads MS Society and Carers Trust. Care North Wales, which was a reassurance to Phil as it meant that During their break, care will be provided care would be provided to Sue during by trained care support workers from the break. local Crossroads Care schemes – network members of Carers Trust. Having this Their care costs totalled £361 (£60 for two support means a true holiday for the whole assessments and £301 for 14 hours care). family affected by MS. Accommodation cost £490 for a week and they had some travel and living Supported short breaks are being piloted for expenses. destinations in parts of Wales, and eastern

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Support Have you visited or stayed with Bond Holidays in Blackpool?

If you have, or someone you know has, we want to hear from you. Bond Holidays run accessible hotels in Blackpool and St Annes, and self catering holiday homes. Bond has approached us to work in partnership. This presents an opportunity to expand the variety of services offered to people with and affected by MS, for short breaks, holidays and respite care. To inform how we may work with the company, we’d like to hear from individuals or branches that have used Bond’s services, be it accessible accommodation, the Holidays With Care service, or their accessible coaches. To feedback on your experience, please contact Chris Evans, Care and Support Services Business Manager on 020 8438 0895 or email [email protected] .

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Finance

With the new system it is useful to keep Branch accounting records to easily re-create a accounting cash book if there are problems with the system. online update Note: the system is not suitable for branches with shops. Branch accounting is a web-based package allowing branches to maintain For more information, contact the finance online accounting records. As branch team at the MS National Centre at accounting is linked to the MS National [email protected] Centre’s system, branches using the package will not have to complete an annual branch pro forma. To use it, log in to the branch accounting system via the MS Society’s website. Your bank statement from Barclays is automatically uploaded to the system and enables you to analyse transactions. Branches using branch accounting will use a ‘receipts and payments’ basis which means there are no accruals or debtors. The system will produce reports that can be used at monthly branch committee meetings. Over the summer a number of branches have piloted the system. Many have commented on how easy and simple it is to use. They have also given useful feedback on improvements and ensured the system works properly. To start using the accounting system, speak to your branch accounts team at the MS National Centre. There is another advantage to using the system – you will not need to produce an annual pro forma for 2013.

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Fundraising Thank you for Support from supporting Cake Land Securities

Break success! Land Securities is the largest commercial property company in the UK and we were A huge thank you for supporting Cake delighted to begin a partnership with them Break this year. It was a great success. in the spring of 2012. In that time, their We are pleased to announce more than head office and their 20 shopping centres £300,000 was raised. We are now planning around the UK have raised just over for Cake Break 2013 and hope to build £30,400 through various fundraising events. on the success of this year and make it The company is committed to helping the biggest and best yet. If you have the MS Society raise awareness of any suggestions please email us at MS and aims to reach a fundraising target [email protected] of £100,000. The partnership offers us high We will keep you updated with our profile space inside their shopping centres planning progress as we prepare for (in England, Scotland and Wales) and Cake Break day – 3 May 2013 . access to their 60 million visitors. To launch the partnership, flash mobs Vote for entertained shoppers in the Livingstone and Bon Accord shopping centres in Scotland. MS Society at Gunwharf Quays in Portsmouth launched Waitrose.com a fundraising charity flower stall in the summer, and the Galleria, Lewisham and O2 The MS Society has been selected by centres in the south showcased local talent Waitrose to benefit from a new online in their ‘Search for a Star’ competitions. fundraising initiative. Many centres have held ‘Get Active’ From the beginning of September to the end events encouraging visitors, employees and of November, when you shop online with resident retailers to keep fit and raise funds. Waitrose, you can vote for the MS Society The Bridges centre in Sunderland hosted to be one of three beneficiaries of £25,000. ‘The Beach’, a children’s sand play area The more votes we get, the bigger our share which raised over £3,500 for the Society. of the donation. The company recently held an after-party following the annual British Council of It’s exactly like the ‘green token’ scheme Shopping Centres conference, with the used in Waitrose shops. Vote for us after proceeds (£8,100) added to the overall total. shopping at www.waitrose.com Future fundraising plans in the pipeline include;

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Fundraising

• A shark dive next March to raise £8,000 Give as you Live • Firewalks, around Bonfire Night, where Give as you Live is a free and easy-to-use people will be invited to walk over hot web application to download on the coals computer. By using it, every time you shop • All the centres have seasonal fundraising online you automatically raise funds for the ideas leading up to Christmas including MS Society at no extra cost. Please promote Santa’s grottos, carol services and gift Give as you Live to all at your branch. wrapping services. Find out more about the Christmas Locally, Area Fundraisers are working catalogue and Give as you Live on together with branches near the retail www.mssociety.org.uk/christmas centres to maximise fundraising opportunities and deliver long-term benefits Alternative Christmas crackers for the MS community. These include Have you bought your Christmas crackers? recruiting volunteers, promoting our If not, you can donate the funds to the services and building local networks. MS Society and we’ll send our cracking Christmas place cards which can be For more information please contact personalised for your guests. It comes the corporate partnership team with a festive joke and message explaining [email protected] that a donation has been made to the or call 0208 438 0700. MS Society on their behalf. Fundraising Order your Christmas place cards today: • Online at www.mssociety.org.uk/crackers through the • Send us a cheque made payable to the MS Society (our suggested donation is festive period £3 per person, but please give whatever Purchase gifts and cards from you can), with your details and the number the Christmas catalogue of place cards you require to Christmas Fundraising, MS National Centre, By entering your branch ‘offer code’ when 372 Edgware Road, London, NW2 6ND. ordering, your branch will receive up to 25% • Call us on 0845 481 1577 to order over of the value of your order. Your code also the phone entitles you to free postage and packing on orders of £25 and over. Request catalogues Join our team of Secret Bakers and find out your branch’s ‘offer code’ by emailing [email protected] Join our team of Secret Bakers. Secretly bake some mince pies or festive treats for colleagues and raise funds using our Secret Baker fundraising pack. www.mssociety.org.uk/secretbaker

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Fundraising

Christmas Dingbats an amazing £66,316 for the MS Society. Raise funds by selling copies of our This year, an incredible 798 drummers Cryptic Christmas quiz sheets to friends raised £85,000 through Justgiving.com and family; add a competitive element and sponsorship, exceeding their by sourcing a prize for the winner. £80,000 target. www.mssociety.org.uk/xmasquiz The MS Society owes a massive debt of There are lots more fundraising ideas at: gratitude to Rick and Karen Prince for their www.mssociety.org.uk/christmas or incredible stamina, patience and generosity email: [email protected] of spirit. Their amazing team of volunteers or phone 0845 481 1577. also deserve a drum roll. Appeals update Area Fundraisers:

Our next fundraising letter will go out in Getting on with it! November to around 70,000 supporters Area Fundraisers are working on some and members. The letter will be about exciting projects that may help maximise progressive MS and two exciting research funds for branches, and national projects trialling drugs that might slow or programmes of work. These include: stop the progression of MS. • Improving fundraising knowledge, If you have any questions or feedback skills and confidence in branches about our fundraising appeals, please • Helping to recruit more fundraising contact Sarah Briggs at MS National volunteers Centre on 020 8438 0847 or email [email protected] • Establishing and developing relationships with schools, colleges and universities • Supporting corporate partnerships such Stick it to MS 2012 as with Land Securities, and helping raises £85,000 branches maximise income through events, collections and fundraising On Sunday 15 July, an astounding activities fundraising event took place at Event City in • Working with the Community and Events Manchester Trafford Centre. ‘Stick it to MS’ Fundraising Team at National Centre to is the brain child of MS Society supporters support and promote national products Rick and Karen Prince. and events such as runs and challenge events such as fire walks and Cake Break Rick and Karen arranged Stick it to MS in 2009, where they set the world record for • Ensuring better stewardship for our the largest drumming ensemble at 582 donors; supporting and thanking them drummers, playing full kits and raised more effectively

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Fundraising

Meet your Area Fundraisers • All organisations are different. Area Fundraisers are available to discuss Some have formal processes and fundraising opportunities and ideas in committees established for fundraising; your area. They are: others support charities in year groups or classes. Many choose charities for Helen Dowdeswell (Greater London) entire academic years, others decide [email protected] by the term. Iestyn Evans (Wales) • The MS Society’s 60th anniversary [email protected] in 2013 offers an ideal ‘hook’ to Sarah Farquhar (North of Scotland) encourage schools to support our cause. [email protected] We’ve made huge advances in the last Fiona Harvey (South of Scotland) 60 years in the support for people with [email protected] MS and in research but there is much Mark Haymes (South of England) more to do. [email protected] • Consider your branch’s key priorities Andy Jarrett (West of England) (in terms of information, services and [email protected] support) and develop a pitch to potential sponsors highlighting specific projects Holly Lambert (East of England) with clear goals – these are more likely [email protected] to encourage support. Simon Moran (North of England) • Explore connections with local schools [email protected] through teachers, PTA members or governors. Consider forming a small team Building to approach schools and talk about MS at branch events and through your branch successful, long- newsletter. term community • Most schools have established ways of raising funds for charities; these tend partnerships to be dress-down days, coin collections and sponsored events. Keep an A-Z of Area fundraisers can support your branch to fundraising ideas to hand to help them make the most of fundraising opportunities with ideas. in your community. There are many • Don’t forget to suggest a Cake Break opportunities to consider, one of which is for the staff room, this always goes building relationships with schools, colleges down well. and universities. Here are some helpful tips to consider; For support consult your Area Fundraiser.

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For England

• Ensuring tests assess whether people Government can walk reliably, repeatedly and safely consultation on • Pushing for symptoms like dizziness, disorientation, visual impairment and the Blue Badge problems with balance to be properly scheme for considered If you have any questions about our England response to the consultation please email [email protected] or call The Government has launched a new 020 8438 0700 and ask to speak to consultation focusing on how people will the Policy and Campaigns Team. qualify for a Blue Badge in England when the new benefit, Personal Independence Payment (PIP), replaces Disability Living Santa Dashes Allowance (DLA). Lots of people currently Take part in a Santa Dash – get together with qualify for a Blue Badge when they are friends and family and enjoy the fantastic deemed eligible for the higher rate mobility atmosphere at these festive fun runs: component of DLA. • Liverpool Santa Dash – 2 December If this option is removed, it means Blue • Greenwich Santa Run – 9 December Badges can only be received from local authorities. This could lead to a postcode • Melton Mowbray Santa Fun Run – lottery, unnecessary assessments and 9 December bureaucracy. Find out more at While there is a possibility some could www.mssociety.org.uk/santa lose out under the proposed changes, the Government’s preferred option means Treasurer’s Forum the eligibility rules for the Blue Badge will be similar to the current system. Following last year’s successful events, This means those who qualify for the we are pleased to announce dates of mobility component of the new benefit are this year’s treasurers’ forums likely to remain eligible for the Blue Badge. • 14 November – MSNC The MS Society supports the Government’s • 17 November – Birmingham suggestion that the link between the Blue • 24 November – Leyland (South Ribble) Badge and eligibility for the benefit should • December – Swindon remain. Our recommendations to the consultation include; To attend email [email protected] or • those who qualify for the Blue Badge telephone the finance team at the MSNC continue to do so (forums are open to all the committee).

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For England Regional Events

North Thursday 11 October MS Support training day 3 (North of England) Thursday 11 October Network meeting – Yorkshire & Humber (West) – Leeds Saturday 13 October Living with MS – Harrogate Thursday 18 October Network meeting – Yorkshire & Humber (East) – York Saturday 27 October Lancashire, Greater Manchester & South Cumbria regional conference – Bolton Saturday 3 November Volunteer development day – Cheshire & Merseyside Wednesday 7 November MS Support training day 4 (North of England) Thursday 8 November MS Support training day 4 (North of England) Saturday 24 November MS Support volunteer engagement event (Lancashire, Greater Manchester & South Cumbria) Wednesday 28 November Yorkshire & Humber support group – Leeds

East Saturday 6 October Living with MS – Kesgrave, Suffolk Thursday 11 October Information Event – Oxford Saturday 13 October Volunteer Forum – Marlow, Bucks Tuesday 16 October MS Support training day 1 (East Anglia) Wednesday 24 October MS Support training day 3 (Thames Valley) Thursday 25 October MS Support training day 4 (Thames Valley) Tuesday 30 October MS Support training day 2 (Herts, Essex & Beds) Tuesday 30 October Thames Valley volunteer fundraising forum Saturday 3 November Symptom management conference – Herts, Essex & Beds Wednesday 7 November MS Support training day 2 (East Anglia) Thursday 15 November MS Support training day 4 (Thames Valley) Tuesday 27 November MS Support training day 3 (Herts, Essex & Beds)

London & South East Friday 12 October MS Support training day 4 (South London) Saturday 13 October Kent newsletter editors’ forum – Maidstone Wednesday 17 October MS Support training day 2 (North London) Friday 19 October Kent support volunteers’ forum – Canterbury Saturday 20 October South London newsletter & website editor’s forum

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For England

London & South East continued Saturday 20 October Awareness event – South East Kent Tuesday 23 October South London transport risk assessment audit Wednesday 24 October Kent Health & Social Care forum – Maidstone Saturday 27 October MS Support training day 2 (Surrey & Sussex) Saturday 3 November MS Support training day 3 (Kent) Tuesday 6 November MS Support training day 3 (North London) Wednesday 7 November Regional forum and volunteer induction – Bromley Friday 9 November Building evacuation training – Bromley Saturday 17 November MS Support training day 3 (Surrey & Sussex) Saturday 17 November Working and Living with MS – Maidstone Saturday 24 November MS Support training day 4 (Kent) Wednesday 28 November Chairs’ forum – Maidstone Friday 30 November MS Support training day 4 (North London) Wednesday 5 December Support Volunteers’ forum (South London)

West Thursday 4 October MS Support training day 1 (South West) – Torquay Tuesday 9 October MS Support training day 4 (West Midlands) – Birmingham Wednesday 10 October Bristol University Volunteer Fair Wednesday 10 October Volunteer induction day – Cullompton Saturday 13 October Hants & Islands regional quiz – Fleet Saturday 13 October Bristol & South Gloucestershire branch recruitment day Tuesday 23 October West Midlands zone meeting (South) – Birmingham Wednesday 24 October MS Support training day 1(Wessex & West) – Bournemouth Tuesday 30 October West Midlands zone meeting (North) – Cannock Friday 9 November Dorset branches county meet-up – Bournemouth Tuesday 13 November Support Volunteers forum – Torquay Wednesday 14 November Volunteer forum – Eastleigh

If you’re interested in becoming a support volunteer, please contact your local MS Society staff member. Support volunteers yet to attend the training session(s) please email [email protected] to request a booking form.

For all other events, please contact your local staff member for more information and to book a place.

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For Northern Ireland

To book or for more information please Branch Area contact your local Area Development Officer Forums: an or contact Samantha McConnell (NI Area Development Manager) on 028 908 02802. opportunity to share good Information Days: practice Benefits and MS Disability benefits are changing including Would you like to exchange ideas with other new reassessments, the introduction of MS Society branch volunteers in your area? Employment and Support Allowance and We’re hosting three Branch Area Forums proposed changes to Disability Living to give you the opportunity to meet others Allowance (DLA). volunteering in your area, discuss ideas and share best practice. Whether you have MS or help care for someone who does, it is worth Each forum will be chaired by a member of understanding your entitlements to benefits. the Northern Ireland Council. There will also be presentations from members of the area We are delighted to announce that we’ve development, fundraising and press and teamed up with Citizens Advice Bureau (NI) campaigns staff. to provide two ‘Benefits and MS’ workshops. Dates and venues: Dates and venues: Western Area Forum Tuesday November 2012 from 11am-1pm Monday 29 October Dunsilly Hotel, Antrim Silverbirch Hotel, Omagh Tuesday 20 November 2012 from 11am-1pm Registration at 10.30am Everglades Hotel, Londonderry 11am-2.45pm (Presentations & discussions) Each event will include: Lunch break 12.45pm-1.30pm • An overview of the disability benefits Northern Area Forum available including Disability Living Monday 5 November Allowance (DLA), Personal Independence Dunsilly Hotel, Antrim Payment (PIP) and Employment and Registration at 10.30am Support Allowance (ESA) 11am-2.45pm (Presentations & discussions) • Practical information and support Lunch break 12.45pm-1.30pm • An overview of what people with MS may East and Southern Area Forum need to explain if applying for benefits or Monday November being reassessed MS Society Resource Centre, Belfast • Face to face advice from a Citizens Registration at 10.30am Advice Bureau 11am-2.45pm (Presentations & discussions) Lunch break 12.45pm-1.30pm This interactive workshop will provide an ideal opportunity to learn more about

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For Northern Ireland

changes to benefits, what benefits you Resource Centre in Belfast on Friday 26 are entitled to and how to apply for them. October . All participants will be required The workshop is free of charge and open to take part in a 2 hour training and to anyone affected by MS. Please join us motivational session prior to ‘walking’. and learn more about this important topic. Nominate someone from your branch To book places please contact to participate and you will receive all of Mark Hatte at MS Society Resource their sponsorship income after expenses. Centre by calling 0289 0802 802 or email Contact the fundraising team for more [email protected] and quote information and to sign up individuals Benefits and MS workshop and the date or groups on 028 9080 2802 or email of your preferred session. [email protected] Fundraising Events Santa Dash & Dander for MS There will be two Dash & Dander events – Working Together this year. The first will be at Stormont to Beat MS Estate, Belfast on Saturday 8 December followed by another at Lurgan Park on Step into Christmas Saturday 15 December . Both events will start at 10.30am. Santa suits will Our festive Gala Ball will take place at the be provided for participants. Ramada Hotel, Shaw’s Bridge, Belfast on Saturday 24 November . Guests will enjoy The events promise to be a fun and festive a champagne reception followed by a time out with the family. Please promote sumptuous dinner before a live performance the Dash & Dander events as part of your by Northern Ireland’s very own queen of Christmas activity plans. comedy, May McFettridge and music from For more information call 028 9080 2802 live band ‘Marty Fay and the Bandidos’. for a registration pack. Early Bird rate tickets at £45 or £450 for a table of 10 are available for branches. Grand Christmas Raffle We hope to see all of our branches Look out for tickets to our ‘Grand Christmas represented on the night. To make raffle’. The raffle can be an additional bookings call 028 9080 2802 or email fundraising tool for your branch in the run [email protected] up to Christmas. Books of tickets will be available from the Fundraising Team from ‘Spooky’ Halloween Fire Walk 1 November. Cash prizes of £500, £250 and on Friday 26 October £100 are for up for grabs at the draw taking People are invited to walk barefoot across place on Thursday 20 December. For more 20ft of hot coals at our Halloween Fire Walk information or to pre-order tickets call the for MS challenge. It will take place at the Fundraising Team on 028 9080 2802.

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For Scotland Scottish Be there for Medicines someone, be a Consortium support volunteer

approve new We're continuing our recruitment drive for support volunteers. The first round of MS pill for NHS training in Glasgow and Edinburgh went very well, and this autumn we are offering Gilenya, the new MS pill, has been support volunteer training courses in approved by the Scottish Medicines Stirling and Dundee. Consortium (SMC) for the treatment of adults with highly-active relapsing Brand new support volunteer Karen said: remitting MS. “The training was absolutely excellent. When I was diagnosed with MS in 2010 The approval of Gilenya means those I shut myself away, but I think being a who have experienced a relapse whilst support volunteer will give me some on first line treatment but do not qualify confidence back, as well as being for Tysabri will now have an alternative able to help other people.” treatment option. If you are already volunteering in a MS Society Scotland welcomes the support role, or would like to take on a decision. For the last 10 years people with new role, there is still time to sign up for MS have needed to inject to receive their the training. The first day ‘introduction to medicines – a pill represents a significant MS Support’ took place in September, step forward and will greatly improve but the following three days are still quality of life. available to book onto: In welcoming this decision by the SMC, Day 2: Introduction to skills we expect that the Health Boards will Day 2: to providing support make the new treatment available. • Friday 19 October 2012 Gilenya is the first oral treatment for MS (Stirling Management Centre) and was licensed in March 2011. 38,000 • Saturday 20 October 2012 patients around the world are already being (Dundee, West Park Conference Centre) treated with the drug. Day 3: Introduction to providing The decision is a u-turn by the SMC, whose Day 2: information previous guidance refused to approve the • Friday 2 November 2012 use of Gilenya by health boards, on the (Stirling Management Centre) grounds of cost effectiveness. • Saturday 3 November 2012 (Dundee, West Park Conference Centre)

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For Scotland

Day 4: Introduction to financial support Please note places at this event are limited • Friday 16 November 2012 and allocated on a first-come-first-served (Stirling Management Centre) basis. To request your place please visit www.mssociety.org.uk/research-support • Saturday 17 November 2012 (Dundee, West Park Conference Centre) If you don’t have access to the internet you can request your place by telephone. To find out more please contact Lynda You will then be contacted to confirm Boyce on 0131 335 4050, or email if you have been allocated a place. [email protected] For all queries please contact Garry Kinnear, Events Officer on 0131 335 4073, or Highlands email [email protected] & Islands Forums for research and branch treasurers MS support event and support 26 October 2012 10:45am-3:30pm Kingsmills Hotel, Inverness, IV2 3LP volunteers Since 1956, the MS Society has invested You should have received information about over £140 million of today’s money in the two forums taking place this November research. Join us in Inverness to hear about for treasurers and support volunteers – the the progress made towards finding a cure first in Scotland. It is open to both new and and learn how we decide which research existing support volunteers – whether or projects to fund. not they have completed the new support volunteer training. You'll also hear about the Research Network from a member with MS – find out how The forums will both take place on your involvement could help us ensure Saturday 24 November at the Holiday Inn & the research we fund reflects your needs Holiday Inn Express Glasgow Theatreland and interests. on West Nile Street, Glasgow G1 2RL. The forums will take place simultaneously, The research session will conclude with in different rooms, from 10am to 3.30pm. lunch; however you are welcome to stay for the afternoon session when we’ll introduce After both forums have finished there will the MS support volunteer programme to be an opportunity to network. Lunch and branch committee members and support refreshments will be provided on the day. volunteers in the Highlands, Islands and • The forum for treasurers will focus on Moray – this is an important change to the induction information, VAT returns and way we will provide support in the future. gift aid. For more information contact [email protected] Teamspirit No. 185 October 2012 23 46323 Teamspirit 185:Layout 1 3/10/12 10:53 Page 24

For Scotland

• The forum for support volunteers Keith will focus on requesting support and The Resource Centre signposting to other organisations. 27 October – 10.00 am For more information about this forum please contact Lynda Boyce Blantyre on 0131 335 4050 or email Miners Comm Resource Centre [email protected] 30 October – 1.00pm

Each course lasts two and a half hours Self management per week, for six weeks. Full details are also available on our website: courses for 2012 www.mssociety.org.uk/events . Do you have MS? Are your For more information and to book please symptoms getting you down? contact Ailsa Blair on 0131 335 4050 or email [email protected] Our free courses can help with overcoming symptoms and the emotional and physical effects of living with MS. Policy Forum: The leaders of our self management save the date! courses know what it’s like to experience symptoms such as pain and fatigue and The next Policy Forum will take place in know the problems that these and other Fife on 3 December from 11am-2pm. symptoms can cause. Look out for more information at Course leaders have attended the www.mssociety.org.uk MS Society’s self management courses and benefited from it themselves so much they trained as course leaders and now deliver the course themselves. The following courses are starting soon: Grangemouth Dundas Centre 12 October – 10.00 am Paisley Accord Hospice 22 October – 10.00 am Blairgowrie Blairgowrie Cottage Hospital 25 Octobe r – 10.00 am

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For Scotland Calling all cycling enthusiasts

We are calling for all cyclists to put their best foot forward and hop on to a static bike and take part in our Virtual Cycling Challenge, to raise awareness and funds for the MS Society. In partnership with Land Securities we are hosting the cycling challenges at the Overgate in Dundee on Saturday 20 October , and the Bon Accord Centre in Aberdeen on Saturday 27 October 2012 , both between 9am and 6pm. We have already hosted a busy cycling event at the Centre in Livingston. We are hoping to get members of the public and members of local cycling clubs cycling for a 20 minute session. Shoppers will be able to donate to the MS Society to guess which bike will go the furthest, and the final number of miles being cycled on each day. Our overall winner of a prize draw from the three centres will win a Revolution Track 12 bike, courtesy of the Edinburgh Bicycle Cooperative. There will also be local prizes at each of the centres. With the recent success of track cycling at the London 2012 Olympics, we are expecting to see an increase in people wanting to find out more about cycling. For more information, or to sign up, please contact the fundraising team on 0131 335 4050 or email [email protected]

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For Wales Area Network Planned by me, Meetings not for me

In October MS Society Cymru will be The Welsh Government is looking to hosting four Area Network Meetings around review the delivery of social care in Wales Wales allowing branches to come together in a proposed new law. We want the Welsh and share ideas and best practice. Government to change the law to give more assistance to people living with This is a opportunity to feedback from the MS to plan their own care and support. Annual Meeting and UK AGM, as well as discuss ways to progress the support The MS Society is calling for the social volunteer project. care system in Wales to enable freedom and independence. A reception will take place Meetings will take place on the following at 6pm on Tuesday 13 November in the dates: Pierhead Building next to the Senedd where • Wednesday 10 October – South West people can voice their opinions about the Wales Area Network Meeting, The Ivy care system and show their support for Bush Hotel, Spilman Street, Carmarthen, the MS Society’s proposals for change. SA31 1LG – 10.30-4.30 Invitations will be sent out, but branches • Tuesday 16 October – South East Wales are encouraged to organise a delegation. Area Network Meeting, St Mellons Hotel, To find out more and get involved contact Castleton, Cardiff, CF3 2XR – 10.30-4.30 Joseph Carter on 029 2078 6676 or • Thursday 18 October – Mid and West email [email protected] . Wales Area Network Meeting, Coleg Powys, Llanidloes Road, Newtown – 10.30-4.30 • Friday 19 October – North Wales Area Network Meeting, Kinmel Manor Hotel, Abergele, Conwy, LL22 9AS – 10.30-4.30 For more information in Mid and South Wales please contact Sue Jones, Local Support Development Officer on 01633 889290 or email [email protected] . In North Wales please contact Urtha Felda, Area Development Officer on 020 8827 0212 or email [email protected] .

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Classified Adverts

Please share these opportunities in your publications and networks.

Kirton Delta Chair Lisnaskea Delta chair from Kirton (a specialist MS Society Northern Ireland has two seating company in Haverhill, Suffolk) fully accessible chalets available for comes with a flotation (pressure relieving) hire at the SHARE village in Lisnaskea. seat and back rest as well as a compressor. The cost is £150 per week and includes a In excellent condition for sale at £499, SHARE fitness leisure pass. Bookings are (retail price £2500). Contact Sue Wright taken on a first come, first served basis. [email protected] . To book a holiday please contact Mark on 028 9080 2802 or Lanyards and [email protected] . Wheel and Walk Shirts Amberwood Holiday Lodge New MS Wheel & Walk t-shirts in various sizes are available for £1 each plus postage. West Herts Branch has a holiday lodge at There is also a stock of 70 green and white Shorefield Holiday Village, near Lymington, lanyards to attach medals sold at 50p each Hampshire, for people with MS, families and including postage. Please contact Michael carers. The chalet has a master bedroom Taylor by email [email protected] or call with en suite shower room, a twin bedded 01525 377 099 . room, bathroom, and lounge/ kitchen area with double fold-out sofa bed. Bookings can be made by calling Richard Smith on 07709 235729. (Please leave a message if necessary and we will call you back.)

Mention of advertisement by the MS Society of products or services is not an endorsement by the MS Society, its officers or staff.

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Teamspirit directory

MS Society Support groups National MS Helpline MS National Centre There are support group for Jewish 0808 800 8000 372 Edgware Road people, lesbians and gay men, London Afro-Caribbean people, Asian MS Information Line NW2 6ND people, and former and serving 020 8438 0799 020 8438 0700 members of the armed forces. 020 8438 0856 Membership MS Society Cymru [email protected] 020 8438 0759 Temple Court Cathedral Road Find us online Volunteering Cardiff www.mssociety.org.uk 020 8438 0944 CF11 9HA 02920 786 676 www.facebook.com/mssociety Fundraising www.twitter.com/mssocietyuk 0870 241 3565 MS Society Northern Ireland www.youngms.org.uk Teamspirit The Resource Centre www.facebook.com/childrenwithMS MS National Centre 34 Annadale Avenue 372 Edgware Road Belfast Grants London BT7 3JJ NW2 6ND 020 8438 0700 02890 802 802 020 8438 0944 [email protected] [email protected] (England, Wales, Northern Ireland) MS Society Scotland 0131 335 4081 National Office [email protected] Ratho Park (Scotland) 88 Glasgow Road Ratho Station Newbridge EH28 8PP 0131 335 4050