Sources of help

The most obvious written source is the Disability Rights Handbook. This is updated every April and published by the Disability Alliance (see Appendix 2). This guide is very readable but, unless you are familiar with interpreting legislation, you should still seek advice from other sources.

• The Benefits Agency handles social security payments for the
Department of Social Security.
• Your local Citizens Advice is the best source of detailed and impartial information available; there are bureaux across the United Kingdom – the telephone directory will list the address and phone number of your local office, or you can contact the national bureau listed in Appendix 1. They will try to answer questions on almost any issues of concern to you, but will direct you to more appropriate sources of help and advice if you need any.
• Your local authority’s welfare rights advisor.
• Welfare advisors at your local branch of the MS Society.
• The Post Office, particularly larger branches and regional offices, stock a wide range of government forms and leaflets, which are normally prominently displayed. These include leaflets detailing entitlements to health care under the National Health Service, family benefit and disability allowances. Contact addresses and telephone numbers are given for further information in each of these leaflets.
• Your local Employment Service Office (Job Centre) will also stock a range of helpful information, including a pack of employment- related publications that cover most issues related to employment and benefit entitlements. Staff will usually be able to answer specific questions that you have, although you may have to book an appointment in advance.

Stopping work

Benefits available will depend very much on your personal circum- stances, the extent of your disability from MS, the nature of your occupation and any health insurance and/or early retirement pensions provision, amongst other factors. This is why you need careful and detailed impartial advice from someone who is able to go through all the aspects of your situation, and point out both the short- and long-term financial consequences of any decision you make.
The first important consideration is whether you are likely to consider a different type of work to that you have been doing, either now or in the future. If you are younger, a considerable way from normal retirement age, this is a crucial issue. Of course the work might be part-time rather than full-time, or involve being self-employed rather than employed. Although MS, as we have said, is very unpredictable, it may be worth discussing your medical outlook with your doctor, particularly regarding your skills and abilities related to the symptoms and any disabilities that you may have now. As a medical assessment of your situation is likely to prove crucial to some of the financial and other benefits you could receive, the role of your doctor – GP or specialist – will be important.
Second, if you have decided that you would like to retire, probably on the grounds of ill-health or disability, then you need to work out how best this can be undertaken. It would be sensible to seek the advice of your Trade Union, if you belong to one, or your professional body, and/or to seek advice from Citizens Advice, before taking any action. How you leave your work – taking early retirement on grounds of ill-health, resigning or being dismissed – also affects the financial benefits for which you may be eligible. Some of these depend on what pension arrangements you might have. You should find out all this from your employer’s personnel department or the relevant pensions company. Your employer should help you to retire at the most opportune time for you to gain financially
If you find yourself being peremptorily or unfairly dismissed, you need to seek further advice immediately from your Trade Union, professional body or Citizens Advice. In these circumstances, if you have been employed by your employer for longer than 2 years, you can pursue your case through an industrial tribunal – but again seek advice.
Third, you need to think through carefully the financial consequences of your retirement in the light of your eligibility for a range of benefits. This will depend on many factors. You will need to be realistic about your current and future financial commitments. You may also have to consider your family, as to whether other members of your household are or can be earning, even if you cannot. Even if you have taken early retirement, and thus possibly have an occupational pension, you may still qualify for various means-tested benefits. These may depend not only on your current income, but on your National Insurance Contribution record and your degree of disability. You may be eligible for some or all of these benefits:

• Incapacity Benefit
• Severe Disablement Allowance
• Disability Living Allowance (see Multiple Sclerosis – the ‘at your fingertips’ guide in Appendix 2).

If you do not have an occupational pension you may be eligible for other means-tested benefits, such as:

• Income Support
• Housing Benefit
• Council Tax Benefit.

If you are eligible for Income Support, then you also become eligible for a wide range of other benefits, such as:

• free prescriptions
• free dental treatment
• free school meals for your school-age children.

Help for services and equipment

If you need a particular piece of equipment, a particular service or a holiday, there are funds held by trade unions, professional organizations or charitable bodies for such purposes. Often there is a question of eligibility, but of a different kind than that for the Benefits Agency. You may have to be a current or former member of the organization concerned, or have some other characteristic that gives you entitlement
– such as living in a particular area.
The problem is often finding out which organizations you can apply to, for many local charities are small and are not widely advertised. However, there is a Charities Digest (your local library should have a copy) which lists many, although not all, sources of funds. Your local library, or Citizens Advice, may be able to give you some sources as well. There is also another directory called A Guide to Grants for Individuals in Need which contains a relatively comprehensive list of charities who provide support for individuals with certain eligibility criteria (see Appendix 1). The MS Society can help here too.

Children as carers

There are a number of allowances that may be available, again depending on your eligibility, when you require the support of others for your care. Some benefits are payable to you, and others to those looking after you. There are, as usual, quite complicated eligibility rules about which you will almost certainly need to seek detailed advice. For example, if one of your children is looking after you on virtually a full-time basis (35 hours a week or more), and you have Disability Living Allowance at the middle or higher rate, or Attendance Allowance, then he or she may be eligible for Invalid Care Allowance. You yourself may be able to obtain Attendance Allowance, or the care component of Disability Living Allowance. The criteria for these allowances are very specific, and trying to help your children out might be difficult, without quite a lot of investigation and advice about your and their eligibility from either Citizens Advice or another impartial source of advice about disability.


As part of the Disability Living Allowance, it may be possible to claim for the higher or lower rate mobility components to help with additional expenses incurred with your decreased mobility. If you are able to obtain the higher rate component in particular, then it opens the door for a range of other benefits. Both the components are open to people below the age of 65 (or 66 if the disability began at the age of 65). The tests for eligibility for this mobility component are increasingly stringent, and it is not possible to go into them in great detail here; you should seek advice about the criteria and their application to you from the MS Society. As someone with MS, to obtain the higher rate allowance, you will need to demonstrate, in the formal words of the regulations that your ‘physical condition as a whole’ is such that you are ‘unable to walk’, or are ‘virtually unable to walk’, or that ‘the exertion required to walk would constitute a danger to [your] life or be likely to lead to a serious deterioration in [your] health’.
There are other criteria under which the higher rate can be claimed but they are unlikely to apply to people with MS. As you can see, the crucial issues in adjudicating any claim for people with MS, apart from when you literally cannot put one step in front of another, are likely to be the meaning of being ‘virtually unable to walk’, or the relationship of exertion in walking to a possible deterioration in health. In these cases, the assessment process and medical judgements are both critical – the variability of MS does not help. For the lower rate of mobility allowance, the major criterion is not so much whether you are physically able to walk, but whether you require someone most of the time to guide or supervise you, to enable you to walk outdoors.
The Disability Rights Handbook published by the Disability Alliance Educational and Research Association has a comprehensive section describing in detail the requirements and procedures for claiming these benefits. You could also telephone or write to the Benefits Agency – which handles such claims for the Department of Social Security – for information on mobility allowances (see Appendix 1). Further help can be obtained through the MS Society’s Helpline (the Benefits Advisor) or your local DIAL (Disability Information and Advice Service). If their number is not available in your local telephone book, the Social Services Department of your local council should be able to provide it for you. There are appeal procedures if your claim is turned down. In any case it is very important that you monitor your situation so that, if your mobility decreases through the MS, or indeed through another cause, you claim for the appropriate allowance. Many relevant and useful local addresses can be found in your area telephone book, or the Yellow Pages or Thomson guides.


Under the NHS, both hand- and electric-powered wheelchairs are supplied and maintained free of charge for people who are disabled and whose need for a wheelchair is permanent. Although, in principle, any wheelchair can be supplied by the NHS, in practice the decision is made locally, where the circumstances of the individual and local resources will be taken into account. Since April 1996, powered wheelchairs can be provided by the NHS, if you need a wheelchair, cannot walk and cannot propel a wheelchair yourself. Again local decisions are made about provision of such wheelchairs, although it is anticipated that local decisions will fit with the broader national criteria. These include being able to handle the wheelchair safely, and being able to benefit from an improved quality of life in a wheelchair. If you already have a wheelchair, move to new area and do not meet the local criteria in that area, you can still keep your wheelchair – unless there are clinical reasons for withdrawing it. Attendant-controlled powered wheelchairs can also be issued where it is difficult for the person to be pushed outdoors – if the area is very hilly, if the person is heavy, or the attendant is elderly and unable to push a wheelchair manually.
There are voucher schemes operated by NHS Trusts whereby people can contribute towards the costs of a more expensive wheelchair than a Trust would provide. Schemes either give responsibility to the Trust for repair and maintenance of the wheelchair, or allow you to take responsibility yourself. You may not be able to use this scheme to obtain a powered wheelchair, but it may be possible to use the Motability Scheme to obtain such a wheelchair. Wheelchairs, pavement vehicles (usually electrically operated wheelchairs or scooters), crutches and walking frames are exempt from VAT.
The MS Society branches and HQ can offer advice on financial help for wheelchairs or even provide one in some cases.


There are a number of benefits for which you may be eligible as a driver. If you receive the higher rate mobility allowance you will be allowed to claim exemption from vehicle excise duty (road tax) on one vehicle. This exemption is given on condition that the vehicle is used ‘solely for the purposes of the disabled person’, so care must be taken as to the use of the vehicle. Nevertheless, it is likely that some commonsense latitude will be given.
If you have the higher rate mobility allowance, you will be automatically eligible for the Blue Badge, which gives parking privileges, and also for access to the Motability Scheme (see below). You will also get VAT exemption on adaptations to make your car suitable for driving by you, as well as exemption on the repair, maintenance or replacement of these adaptations.
Note that the mobility allowance does not count as income for these purposes. Furthermore arrears will not count as capital for means-tested benefits for up to 1 year after they are paid.