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Breaking (and not so breaking) News! Last updated 18th Jul 2010 |
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Membership List Mutual Support’s membership list is out of date in terms of addresses, telephone numbers and particularly e-mail addresses. Please will ALL members fill in this membership update form and return it to the Membership Secretary as a matter of some urgency – it will only take a couple of minutes so please don’t forget. The online form is here or if you would prefer to print it off and send it by post, download it here.
Suzanne |
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Chair’s Introduction and the Future for Mutual Support Having recently taken on the important role of Chair of Mutual Support I thought it appropriate that I introduce myself to you all and layout some ideas and thoughts for the future of Mutual Support, particularly for the benefit of those who were unable to attend the AGM. Background For those who don’t know me that well and for the newer members of the Group perhaps I should begin by giving you a little information about my background. I joined the Civil Service in 1984 as an executive officer in the MOD. In 1989 I joined the RAF on a permanent commission as a professionally qualified entrant supply officer. My first tour was out of branch as the first supply officer MTO at RAF Wyton, my second as an instructor at the Initial Supply Officers School RAFC Cranwell and my final tour as Unit Supply Policy and Procedures at Support Command. Regrettably, I was medically discharged due to MS in 1995. I was serving at RAFC Cranwell when I was diagnosed with MS and a week after diagnosis Kim Bartlett came to see me. It was so helpful to meet someone else with MS as I didn’t know much about the disease at all. Kim was so positive and cheerful and was able to answer so many of my questions that meeting him was invaluable to me. Kim soon explained to me how meeting and helping me only confirmed his vision and desire to set up an MS support group for Service personnel and quickly I was roped in to help. To cut a very long story short that is how Mutual Support was born way back in 1991. I have been heavily involved with Mutual Support since its inception and as one of the three founder members, I care very deeply about the work that we do and have worked in numerous committee roles over the years. I also work closely with the MS Society and have a great deal of experience in welfare matters, war pensions and AFCS05. Finance Background The first and most pressing need for Mutual Support is funding. Approximately 3 years ago Mutual Support was lucky enough to receive almost £30,000 from a sponsored event called Monsterski. This boosted our funding enormously and fundraising in any serious way stopped because it was believed to be inappropriate to request funds when our account was so healthy. Our funds have now reduced to the level where we hold less than one year’s running costs and fundraising has now become somewhat urgent. Whilst I understand the reasons for not approaching other Service charities when we had a healthy bank balance, I would not wish to see the situation arise again where we are concerned for the future activities of the Group due to a lack of funds. I believe we should hold a minimum reserve of £25K (i.e. £25k over and above one year’s running costs) to cover core activity so that we are able to guarantee we can continue our main activities in the event of hard times, reserves are a safeguard against fluctuations in income and it is perfectly reasonable to make a case for holding reasonable reserves. This will mean that should we be lucky enough to find ourselves with a healthy bank balance again soon, we will not need to wait until we have reduced it back down to one year’s running costs before we start to fundraise in any significant way. Future Funding This month I have written letters and filled out applications to the Service benevolent funds requesting grants totalling some £25K for Mutual Support. The feedback from our President and the Grant Managers themselves is that at least some of the requests are likely to be successful. I also made an application to the Big Lottery Fund (Reaching out to Communities) but unfortunately this was not successful as Mutual Support did not sit comfortably with their awards criteria. However, The Big Lottery Fund has recently announced that specific funding will soon be made available to Service charities and once released, I will make another application to this new fund. I would also like to attempt to gain funding outwith the military and its associated charities and as such, I have recently approached numerous civilian companies for funding/sponsorship. The Fundraising Manager will also be encouraging and co-ordinating fundraising within the Group and will be submitting regular articles to the newsletter to keep members informed of activities taking place so I plead with you all to put your thinking caps on and try and raise some funds locally. I recently spoke to the treasurers at MSHQ and have their agreement that it is entirely appropriate and prudent for us to ringfence funding for our residential weekends (when funding permits) and as such they will consider a case to hold at least £25K over and above one year’s running costs. This should prevent the current situation arising again. It is my aim to reverse the downward trend in Mutual Support’s finances. Residential Weekends The members’ contributions to the residential weekends were abolished a couple of years ago following a unanimous vote to do so by the members at an AGM. It is now universally agreed that whilst we can afford to do so, zero contribution weekends are the right approach, not least because, the revenue generated by inviting contributions from those who can afford it, is identical to that generated by the previous charge we made (around £2,000 per weekend). Residential weekends are not intended as fundraising activities; they are for the benefit, education and support of our members and are one of our primary objectives. Any fundraising achieved at these weekends is a bonus. It is my intention to keep the residential weekends at zero contribution to the members as long as funds permit. There is a misconception that the majority of members are quite well off because they are in receipt of war pensions - this is simply not the case. At least half our members do not have war pensions and live on state benefits. We must always ensure that we are committed to making our activities accessible to all members irrespective of income; this is a fundamental principle of charitable work. By levying a charge we are excluding those who cannot afford to attend or we commit ourselves to means testing members, something we do not have the time or expertise to do and something that would not be appropriate for a residential weekend. The pride of most Service personnel also means that many are not prepared to ask for or accept financial help and would therefore prefer not to attend rather than ask for financial assistance. Whilst we only previously charged £30 per member to attend the weekends, for many couples £60 plus travelling expenses and incidentals was simply too expensive, totalling some several hundred pounds for members who must travel long distances. The Support Team carried out a survey and found cost was a significant factor for those who did not attend. Since we stopped charging, the numbers attending have increased. Accessible accommodation and the size of the conference room available is also becoming a limiting factor for numbers attending and this is something that needs addressing. We need to look at alternative venues and the possibility of exchanging one of the residential weekends per year for 2 non-residential, regional meetings. We would like to expand the services we provide at the meetings and at the next residential meeting will hold a carer’s session specifically aimed at carers, we have held such a session in the past but his time it will be run by the Strategic Lead for Carers at the MS Society. In addition, if the demand is there, we could, in the future, hold sessions for the children of parents with MS. Publicity Over the past year I have been helping the Publicity Manager to improve the profile of the Group both within the military world and externally. You will all have seen the recent MS Matters article I organised which illustrates the way I intend to promote the Group; I have also recently approached the editors of numerous Service publications to ask them to run similar features. I have designed an advert for Mutual Support that can be used in any publication and a smaller one for websites. I have recently sent this advert to RAF News, Soldier, Navy News and Veterans World. I have also requested the SPVA include Mutual Support in the back of their War Pension Leaflet 2. We will be attending numerous air days and other functions this year, including Armed Forces Day in Cardiff on 26 June; these events all help to publicise Mutual Support and pick up new members who are unaware of our existence. BFBS will be featuring us on a TV programme; they have already filmed the Committee at work at the recent Committee meeting and will now follow up with 2 or 3 case studies featuring our members. Over the last few years our committee meetings have all been held at the MS Society or the MS Trust. I believe it is important for us to work with and alongside other Service charities and as such, it is my intention to rotate the meetings around these charities in order to foster closer working relationships. Support Team The new Support Team is working well and I am delighted that someone has volunteered to take over the reigns. Getting and keeping good volunteers is a constant issue and any expansion of the Group in this area is totally dependent on the number of volunteers we have. The welfare and support of our members is key to what Mutual Support stands for and it is also our most time consuming function. Like all charitable organisations the majority of the work generally falls to just a few committee members and Mutual Support is no different, bringing fresh blood onto the Committee is a priority. Ideally, I would like to bring some healthy, willing serving personnel looking for quality secondary duties onto the Committee, something I have been trying to encourage for some years. At this point I would like to request that all members give serious consideration to what they could do to help the Group and to contact me if you feel you could devote a few hours a week to help with the running of Mutual Support. There was a recent suggestion to set up a 24-hour helpline for carers and this caused some consternation amongst members of the Support Team. The MS Society itself cannot justify a 24-hour helpline either for people with MS or their carers, so for Mutual Support this is an overly ambitious aim. If funds ever permit I believe it would be worth considering employing a counsellor or professional benefits advisor to lighten the workload on the Support Team and to improve the service we offer. I am not sure with the numbers we have whether we could justify a full-time employee but we could consider sharing a part-time employee with another small Service charity, MS branch or support group. This would be a very long term aim dependent totally on funding. War Pensions, AFCS05 and SPVA Mutual Support is yet to experience its first medical discharge under the new compensation scheme; however we have every reason to believe that people with MS will not be compensated under the new scheme in the way they were under the War Pension Scheme. Now that Mutual Support is a member of The Confederation of British Service and Ex-service Organisations (COBSEO), we hope to be able to use their influence to help fight our first case. The Scheme was recently reviewed by the MOD under the independent chairmanship of Admiral the Lord Boyce, to ensure it is fit for purpose. The Review revealed that the AFCS is broadly sound, but improvements have been recommended in a number of significant areas; the most significant to Mutual Support is that an independent medical expert group will be set up to advise on compensation for illness as the current tariff system does not adequately cover illnesses. We await the recommendations of this review panel. Our members experience numerous problems with the SPVA system following discharge and their system could be improved to make the transition to civilian life much easier at this most difficult and stressful time. The Pensions Advisor and I hope to arrange a visit to talk with staff and to share knowledge and experience in order to understand the problems on both sides. IT Mutual Support needs a better, more secure electronic filing system. The Membership Secretary has recently volunteered to do some work in this area with the Web-site manager and one members son have also volunteered to assist. The Future I hope you will understand from all I have said that I am passionate about the Group I helped set up all those years ago. The welfare of our members is my main priority and is the reason I am prepared to devote so much of my time to Mutual Support whilst I am physically able to do so. It is my opinion that Mutual Support needs a hands-on chairman to guide and steer the Committee. I have a broad knowledge of most roles on the Committee, having filled many of them myself over the years, and am willing to work hard to ensure the group continues to flourish. With regard to a longer term view for the Group that largely depends on funding, the number and quality of volunteers and the wishes of the members – it is your Group, run for you by the Committee. Whilst I see it as my responsibility to guide and advise the Committee and members and try to ensure unwise decisions are not made, my role is one of facilitator in accordance with MS Society guidelines. However, I do also appreciate that without good, strong ideas coming from the top, such groups tend to stagnate. I will try to ensure this does not happen whilst at the same time being realistic about what we can achieve. The role of Mutual Support has not changed significantly in the last 19 years, the membership has simply grown and the Committee has had to grow with it in order to provide a more professional service to the membership. I don’t foresee any significant changes to the role or functioning of the Group in the next few years, our challenge will be continuing to support an ever increasing membership with our limited resources and as such I would like to maintain and hopefully improve the services we already provide. Please let me know if you have any strong views about what we are doing right and what we could improve, it is your group and I would welcome your input.
Suzanne |
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Forum/Message Board We now have a
forum/message board up and running on the MS Society website. It can
be accessed through this link -
Mutual Support Message Board.
The purpose of the Mutual Support Message Board is to provide a safe
forum for Mutual Support members to share experiences and help each
other cope with the challenges of living with Multiple Sclerosis. The board is moderated by myself and Graham at the moment as well as Val from the MS Society. If you would like to become a moderator please contact me ASAP. Heather |
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SUPPORT TEAM NEWS BENEFITS CHECK UP Benefits guides that we have published previously have focused almost entirely on benefits for those with a disability and on War Pensions and supplements. This is a more general guide. IncomeIs your family income under £66,350? If so, you may be entitled to benefits and tax-credits. Many are simply unaware of their eligibility, including a million plus low income pensioners who sadly fail to collect their pension credit. Yet it's easy to do a five minute benefit check up, using a special web-calculator for the under and over 60s. Are you eligible? Unsurprisingly the social security system is a nightmare of complexity, so it's impossible to easily summarise exactly who's eligible for payments. Yet it is easy to say who should check; cash may be available for anyone in one or more of the following groups.
Step 1: Do a five minute benefits check up A rather sexy little site www.entitledto.co.uk does the work for you: it has a regularly updated calculator that works everything out, in one go, whether you‟e 22 or 72. It‟ very simple to use: just input basic details about your personal situation, such as income, council tax bill, and your savings and it reveals what, if any, benefits you're entitled to. The calculator includes all the main benefits: Working Tax Credit; Council Tax and Housing Benefit; Pension Credit; Child Benefit; Child Trust Fund and Child Tax Credit. It's important to remember, benefits rules do change, so if it's likely you're entitled to benefits then it's worth doing an annual check up. Step 2: Scan the checklist for other allowances Those people who are fully reliant on benefits and/or struggling for cash should go to a Citizens Advice Bureau or one of the network of Independent Advice Centre for a one-on-one detailed benefits check up. For others, while the entitled to calculator is designed to focus on the main benefits (and tax credits) and only includes those in the calculation, the site itself also points you to information about other benefits, such as Maternity and Paternity Benefits, Carers' Allowance, Disability Living Allowance, Attendance Allowance, Income Support and Job Seekers' Allowance. Yet there are some more specific entitlements that aren't included, so it's worth scanning the following, to see if they apply. Information on all these benefits can be found at www.directgov.co.uk Bereavement and Guardian's Payments Bereavement Allowance is a weekly benefit paying up to £85/week for up to a year after the death of a spouse/civil partner who paid NI contributions. To be eligible you need to be over 45 when they died, but not yet the State Pension age. There's also a separate one-off bereavement payment of £2,000 tax-free available and separate special allowances for widowed parents bringing up a child(ren) or expecting your late husband's baby. Guardian's allowance is available for those bringing up a child (or children) because one or both of their parents have died. You must be receiving Child Benefit for the child(ren). Discretionary Housing Payment As well as main housing and council tax benefits included by the calculator, each council also has a set budget useable for discretionary housing payments. Qualifying guidelines vary, but if you are entitled to some Housing Benefit you are entitled to apply for a Discretionary Housing Payment. Employment and Support Allowance (previously Incapacity Benefit) This is paid if you are sick/disabled and unable to work (signed off by a Doctor), not getting statutory sick pay and assessed as incapable of work. Those over 20 will usually need to have paid enough National Insurance (NI) contributions to qualify. State Pension The Basic State Pension is a government-administered scheme, funded by National Insurance contributions (NICs), to give those who have reached the Government-defined retirement age a guaranteed weekly income, currently just over £97.65 a week. How much you get depends on the amount of NICs you have built up. See the pension guide next month for more info. Support for Mortgage Interest If you have a mortgage, and are struggling to make monthly repayments, this Government benefit can pay the interest for you. If you've savings under £16,000 and in receipt of other benefits you can apply. A couple more schemes are open to homeowners in even deeper trouble; the Homeowner Mortgage Support Scheme can defer mortgage interest payments and then add them onto the capital, to be repaid when you can afford it, and the Mortgage Rescue Scheme takes it a step further still by buying all or part of your home to cut your outstanding borrowing. Free school meals, clothes and milk Households earning under £16,040 or on income related benefits can get cash to help with sending their kids to school.
The government is giving away 270,000 free web access and lap-tops grants aimed at lower income families without internet ac-cess. If you have children in school years three to nine (roughly age 7 to 14) you may be eligible for over £500 worth of equipment. Call 0333 2001004 for more info. Social Fund Grants and Loans The social fund is made up of several pots of money that can help cover important costs that are hard to pay for out of your regular income. Demand can be high and for some there isn't a bottomless allocation of money, so your circumstances may mean you're not eligible. If you think you qualify do apply though.
More information can be found about all the above benefits by calling the benefit enquiry line on 0800 882200 or by visiting www.directgov.co.uk and searching for the appropriate benefit in the search bar. Education Maintenance Allowance (EMA)Available to 16-19 year olds, in households with income under £32,300, who decide to stay in further education after their GCSEs, studying at least 12 hours of guided learning per week. Claiming these funds does not affect any other benefits that you receive. Call 0800121 8989 (England) 0845 6028845 (Wales) 0845 6017646 (NI) Step 3: How to get
your benefits Social security benefits can be applied for/claimed either at a Job-centre Plus or, for people with disabilities or carers via Benefit Enquiry Line on 0800882200. Child benefits and tax credits come under the Inland Revenue, which can be called on 0845 300 3900 Council tax and housing benefit is applied for at your local council, and the pensions credit via the pensions service on 0800 99 1234.
Hope this helps |
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THE BRITISH LEGION MANIFESTO ‘Honour the Covenant’ is the Legion's ongoing
campaign calling on Government to honour its life-long duty of care
to those making a unique commitment to their country. The Military
Covenant does not have the force of law, but has been enshrined
through convention, custom, and contemporary application, and it
represents the Nation's moral commitment to its Armed Forces. Veterans and their families need the next government to:
Service Personnel and their families need the next government to:
Please sign the petition to support The Royal British Legion's manifesto for the next general election, you can do so by visiting their web-site and following the links. Many of the issues they are fighting affect our members directly and the more support they have the bigger the voice – Let’s get Loud! Suzanne Terl’s Thoughts Suzanne forwarded her article to me for comment
before she sent it to the newsletter for publication and I felt
compelled to add force to her request. Please do as Suzanne asks, visit the British Legion site and sign the petition! Terl |
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War Pension About six months ago a short
article asked people to contact Terl Bryant if they had been
diagnosed with MS within seven years of leaving the service and they
were not in receipt of a war pension. There was quite a flurry of
people who were unaware of their potential ability to claim a war
pension. Six cases have now been taken on board. The worrying aspect about the six cases is that in the main they were unaware of their potential 'rights' to a war pension and in one case had apparently even been talked out of claiming because they could "lose other benefits". Even more worrying is that as one does not like talking about what one is in receipt of in the way of war pension and benefits people are not actually claiming what they are entitled to. In my own case I was quite happy with the 20% war pension award that I had been given and it was only when I met and spoke frankly to some other war pensioners that I realised that I was well below the level I should be on, three months later by stint of a few letters I had an additional 40%. Life in the services teaches you to be proud of what you can achieve, one does not particularly want to say "I can't do this and I can't do that". There is a myth and belief that the "services" will look after you when you have left, I am still looking for my fairy godmother and the tooth fairy to come and tell me about it! If you don't look out for yourself. No one else will! Like it or not MS is a degenerative illness, we all find ways of dealing with the problems as they arise, what we don't do is take stock of where we are in relation to the person who joined the services. The medical appendices for Norcross describe MS as a degenerative condition and the SPVA should not challenge a deterioration claim that covers items listed in the three paragraphs I have appended. So the bottom line, please ask Norcross for a copy of the medical examination that you had when you were awarded your war pension and compare it with where you are now, if there is a discrepancy then please contact Terl or any of the welfare team to see if we should do anything. A successful deterioration claim frequently provides a gateway for supplementary allowances such as CAA, unemployability supplement, mobility supplement etc A total reassessment is carried out and an award made. In 2008 of the deterioration claims submitted, 1620 were increased, 1585 were maintained and none were reduced.
If you need someone to check over the forms before
you send them in why not contact us at the welfare team, that’s what
we are there for. The Medicial Appendix of MS as per
SPVA 4. The principal manifestations of MS are weakness
of one or more limbs, spasticity, muscle fatigue, unsteadiness of
gait and difficulties with speech. Loss of sensation may occur.
Difficulty in bladder control is common and there may be urinary
incontinence. As the disease progresses walking may become
increasingly difficult, and the patient may ultimately become chair
or bedbound. Mood swings and short term memory defects are features
of the more advanced stages of MS. 5. Visual disturbances are a major feature of MS,
and blurred or double vision may be an initial presenting symptom.
Progressive visual impairment may ensue, as may visual field
defects. 6. The course and effects of MS vary widely from
patient to patient and are unpredictable. Spontaneous remissions of
varying length are common, particularly in the earlier stages of the
disease. The most common pattern is of frequently recurring relapses
spread over many years, leading to chronic disability and dependancy. In other words, if you are not sure, LIST IT! Terl |
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IMPORTANT CHANGES TO THE LAW IF YOU ARE DRAWING YOUR STATE PENSION As of 6 April 2010 there will be a change to the rules regarding category B pensions. The Pensions Service Leaflet BR 2189 refers. What are category B pensions? Important change For advice contact the Pensions Advisory Service helpline 0845 601 2923 PLEASE ensure that you keep a record of date , time and who you spoke to. If any member is unclear about this issue please contact me (afpsadvisor@mutualsupport.org.uk)and I will try to point you in the right direction ( I say this as some of the helpline folk don't know about this change in the law). Note: If anyone has claimed their pension and lost their unemployability supplements they they should check with the pensions helpline to see if they were correctly advised (a calculation of one and the additional benefits attached against the other would be essential) and then see if the decision can/should be reversed. Important change for spouses of Her
Majesty's forces Terl |
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Website Watch Directgov - This site takes you straight through to public services. It is the main Government website. The section for disabled people has information on transport, leisure, financial support, employment and much more. http://www.direct.gov.uk/en/index.htm The
Department of Work and Pensions - This Government
site has benefits and service information for disabled people and
carers. Service Personnel and Veterans Agency (SPVA) - SPVA will be staffed by caring and experienced people, who make it their business to understand and empathise with the serving and veterans community and are committed to delivering a high quality service. http://www.veterans-uk.info/ Citizens Advice Bureau - The CAB offers free, confidential and independent advice from over 3,200 locations. This site has useful factsheets to print off and FAQs on a wide range of subjects. http://www.citizensadvice.org.uk/ The National Debtline - This site offers free, confidential and independent advice on debt problems. It has a helpline, fact sheets and sample letters for problems with debt. http://www.national-uk-debtline.co.ukConsumer Direct - This is clear practical consumer advice from the Government. The site has useful factsheets and a helpline to use to complain about a trader or to speak to a trained consumer adviser. http://www.consumerdirect.gov.uk/Watchdog - The BBC's Watchdog programme on consumer affairs has a site includes plenty of interest and pro forma letters on current issues.http://www.bbc.co.uk/consumer/tv_and_radio/watchdog/ Ricability - Ricability is an independent research institute that produces guides for disabled and older consumers. Currently, on the site, there is a guide to choosing a car. http://www.ricability.org.uk/Disability Rights Commission - The Disability Rights Commission is an independent body established by Act of Parliament to eliminate discrimination against disabled people and promote equality of opportunity. http://www.drc-gb.org/RADAR - RADAR (The Royal Association for Disability and Rehabilitation) campaigns for better lifestyles for disabled people and their families. They cover a wide range of issues and produce factsheets, publications and offer an advice service. http://www.radar.org.uk/radarwebsite/The Department of Transport - The mobility section of the DoT website is a useful source of information on public and private transport. It also covers transport related issues and the legislation. http://www.dft.gov.uk/NHS Direct - NHS Direct is a website full of information on health, medical conditions, treatments with links to other organisations and lists of useful publications. http://www.nhsdirect.nhs.uk/Equality 2025 - An important initiative that will help the life chances of disabled people by ensuring that they will have a direct voice to central government helping to design policies and services that disabled people really want. http://www.equality2025.co.uk/ |
If you are not already a subscriber to 'new Pathways', the Multiple Sclerosis Resource Centre bi monthly magazine, may I suggest you become one. It is always full of interesting and informative articles. The cost for 'new Pathways' is £10 annually. |
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MS National Support Groups |
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AsianMS c/o Sanjay Shah e mail: sshah@mssociety.org.uk |
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In no way should anything in this newsletter
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Please Note. Views printed in this website are NOT necessarily those of the Editor or the Mutual Support Committee. |