Articles on Medical Diseases and Conditions

Month: July 2009

  • Leisure, sport and holidays

    Although Multiple Sclerosis itself may cause some problems from time to time, and interrupt your life more than you might like, it is important to keep your leisure activities going as much as you can, not least because many of these will have given you a great deal of enjoyment in the past. They will also enable you to keep in touch with old friends, and make new ones. Indeed, leisure, sport and holidays may also enable you to place MS far more in perspective.
    Compared to a few years ago, there are a rapidly increasing number of opportunities for leisure, sport and holidays for people with MS with a range of disabilities.

  • Respite and residential care

    When someone with Multiple Sclerosis is significantly disabled in terms of the everyday tasks that they can perform, it is not always possible for them to remain in a home setting continuously – even with help from family, friends and the health and social services. Other options may have to be considered; these might include a temporary and occasional break through being cared for elsewhere, to longer term and more permanent care outside the home. People have very dif ferent views about these situations, and how to manage them. They are not often easy to discuss, let alone act upon. This is not least because such options almost always involve the separation of the person with MS, from their partner or other family members, and this adds to the anxieties and concerns of all parties to the discussions.

    Respite care

    Respite care is often thought of as a need for a break from partners, not just from their care. This need not be the case at all, and a break is needed purely from the tasks of actual caring. However, it is expensive, and practically more complicated to provide respite care for two people rather than one. There are therefore currently very few places for couples in respite or short-term residential care when one partner has MS, and you will be fortunate if you find such a facility. Given the importance of maintaining a good relationship with your partner, you could lobby your local authority about this problem and/or discuss it with the welfare officer of the local branch of the MS Society.

    Residential care

    There are several benefits that may well be affected if you go into permanent residential care outside your home. These are Disability Living Allowance, Attendance Allowance, Income Support and Income Job-Seekers Allowance, Housing Benefit, Council Tax Benefit, together with one or two benefits targeted on special groups of people. The rules governing exactly how these benefits are affected are different in each case, so you should seek advice, initially from Citizens Advice, before you make any decision about going into residential care.

    Costs
    Unless you negotiate independently for residential care, and then pay yourself, under the NHS and Community Care Act 1990 local authorities are empowered to charge you for the cost of providing such care, whether they provide it themselves or use an independent home. The local authority fixes a standard rate for the cost of its own accommodation, or bases it on what it is charged in providing a place in an independent home. If you cannot pay the appropriate rate then the local authority will assess your ability to pay and, on the basis of the criteria, decide what to charge. It is important to note that the assessment would be of your partner’s financial status alone, not of your joint status, if you have a partner. Although a local authority can approach a spouse and ask for a
    ‘reasonable’ contribution to the support of the resident, there is no formal definition as to what is reasonable – and an unmarried partner has no obligation in this respect.
    The criteria by which liability to pay some or all of the costs of residential care are assessed are rather complex. They will consist of investigating your financial status, in terms of both capital and income, and then making certain kinds of allowances for personal expenses. It is very important that, if you are considering residential care, you should seek advice about the costs for which you would be liable well before you enter into any agreement. Citizens Advice should be able to help you in this respect, and you may well have a local disability information service which can also assist you.

  • Care in the community

    ‘Community care’ is the general name given to services provided to help people with an illness or disability to continue to live in their own homes. At the same time, there has been an associated policy to provide sheltered housing and residential and nursing homes in ‘the community’ for such people who cannot continue to live in their own home.
    The Community Care Act (1992) provides the framework for community care. This Act gives Social Services Departments the responsibility to assess people’s needs through a ‘needs assessment’, and to provide, or to purchase from others, a range of services to meet those needs. The assumption behind the provision of these services is that they will enable the person to remain in their own homes as long as possible.
    ‘Community care’ covers a wide range of services that are designed to support people in their own homes – but the nature and type of these services varies considerably from area to area. As might be expected, local financial constraints have a major effect on what services are provided, and indeed when a judgement may be made that it is no longer viable to support someone at home. It is important to note that local authorities (through their Social Services Departments) are not obliged to continue to support someone at home, if this would cost more than moving them to a residential or nursing home – although sometimes they may continue to provide services for the person at home. This issue, amongst several other major issues, has been – and indeed still is – the subject of legal argument as to the exact obligations of local authorities under the Community Care Act.

    Health services versus social services

    In addition there can be problems in ‘community care’ arising from the role of health services in relation to social services. Some community- based services, such as nursing help or physiotherapy, are obtained through the NHS (via your GP or hospital specialist), whilst others, such as home help or meals on wheels, are obtained via social services (usually through a needs assessment under the Community Care Act). However, a number of practical difficulties have arisen as to when a service is a ‘health’ service, when it is a ‘social’ service, and, most importantly, who (the NHS or local authorities) should pay for it. Although there has been a series of firm government attempts to produce a cooperative environment between health and social services, people with MS may still find that they are in an uncomfortable position between two major service suppliers. Nevertheless, if you feel that you are in need of community service support, you must ask for a Social Services needs assessment.
    Community health services are now being increasingly provided through a new range of organizations called ‘Primary Health Care Trusts’. Although such Trusts are not yet established in all areas of the UK, their numbers are increasing rapidly. It has been government policy that priority must be given to primary health and community-based care, whereas previously the focus was much more on hospital care. In a number of cases ‘Community Health Care Trusts’, which had combined the provision of both hospital and community-based care, are now giving way to Trusts based entirely on primary and community are. The services provided through the community/primary care-based trusts include district nurses, health visitors, community psychiatric and mental health nurses, psychologists, physiotherapists, occupational therapists, speech and language therapists, dietitians and chiropodists. There may also be specific services for incontinence, cardiac care, mastectomy and colostomy. In some areas there are specific MS nurses who act in a wide-ranging role. Most of these services are obtained through your GP or practice nurse, but in some areas they may still be organized through hospitals.
    There are a range of collaborative arrangements between Community Health Services. In some places the collaboration works well and in others less well. Increasingly formal collaborative arrangements are being set up, with the Social Services care manager acting as the main liaison between the person with MS and the service providers. However, as the management structures, funding sources and professional tasks of Social Services and Community Health Services are different, the link between the two may not always work well – even though they both emphasize their service to the person with MS.

    Needs assessments

    A needs assessment is organized by Social Services when they think that someone may need community services. The assessment is usually carried out either by a social worker or an occupational therapist; you will have to complete a questionnaire. The views of the GP, other professional staff and your carer, if you have one, will be taken into account.

    Care managers
    A ‘care manager’ will be appointed, if you are granted services, to manage a ‘care plan’ – this will state the nature, type and frequency of community services you may receive.
    This plan will be monitored and appropriate changes made to it as your situation changes. The care manager will be the main line of communication to the Social Services Department, and the main means through whom any problems can be remedied or resolved. A good care manager will be supportive and helpful.

    Services available
    Financial constraints and the differential availability of services locally may mean that relatively few are available for any one person. The list in the box overleaf shows (again in principle!) the kinds of services that might be made available, depending on the results of the needs assessment, local resources available, and the organization of health, social service and voluntary sector cooperation.

    Carers needs
    If you have a carer, and you share the house with that person, then he or she can request their own needs assessment. This is not a check as to whether they are ‘good’ at caring; it is to check whether they are getting the support needed to carry on caring.
    Carers’ needs assessments are carried out by Social Services Departments under the arrangements in the Carers (Recognition and Services) Act (1995). Such a needs assessment can be considered only in conjunction with your own needs assessment.
    Social Services are not under any legal obligation to provide help for carers, but an assessment may put you in a stronger position to argue for more support or, for example, respite care.
    The Carers National Association (Carers UK) has a helpline which provides advice on carers’ needs assessments. It publishes helpful booklets on caring aspects.

    SERVICES AVAILABLE

    In your home
    • adaptations of various kinds
    • alarm systems
    • various benefits
    • equipment
    • help from Good Neighbour or Care Attendant schemes
    • home helps or carers
    • home visits from various professionals
    • homemaker schemes (someone to look after your home if your carer temporarily cannot)
    • home library service
    • laundry service
    • meals on wheels
    • odd job schemes (practical help for odd jobs in the home)
    • recreational facilities ( TV and radio)
    • sitting in or sleeping in services (allowing a carer a day or night away)
    • social work support
    • telephone services

    Outside the home
    • day centres
    • day hospital care
    • education work centres
    • holiday/short-term care
    • medical escort service (to get to hospital)
    • respite or short-stay care

    Medical ser vices
    • occupational therapy
    • physiotherapy
    • speech and language therapy
    • general rehabilitation

    Disagreeing with the assessment
    There are many complicated (and controversial) issues regarding needs assessments, and particularly in the balance between physical capacity to undertake tasks, and emotional, or psychological reasons that may make this difficult. This can be a particular problem in the area of personal care, where there may be strong social, emotional or personal inhibitions in one family member undertaking toileting or bathing for another – especially where they are of opposite genders, or of different generations. In the needs assessment itself, one Social Services Department (or one social worker) may feel that ‘need’ (for other services) is not present, and that you are physically capable of undertaking the task, even though you may find it personally very difficult, or damaging to your relationship with your partner . Of course, local financial constraints may also mean that very stringent definitions of ‘need’ rule out a more sensitive approach to such issues. An appeal may be necessary against such a needs assessment if you feel strongly about it.

    Appeals
    If you do not agree with the needs assessment or with the care plan you have been given, the first course of action is to contact your care manager – usually an occupational therapist or social worker, to discuss your concerns in order to try and resolve them. If you are still not satisfied, you should write formally to the Director of Social Services (or the Complaints Officer if the Social Services Department has one) and ask for it to be registered as a formal complaint. You may ask someone else to help you write the letter. Someone (not the person who undertook the original needs assessment or devised the care plan) will investigate your complaint and you must receive a reply within 28 days from the authority’s receipt of your formal complaint. If you are not satisfied with the authority’s reply, you can ask for your complaint to be heard by a review panel within 28 days of the date when you received that reply. You can be accompanied by someone to support you at the hearing of the panel, and the local authority must give its response to the findings of the review panel within 28 days. This procedure has been used with increasing frequency to try and clarify the basis on which community care services are provided, with a number of disputed cases going on to the High Court for final resolution.

    Home helps versus home care workers
    It is not always clear exactly what the distinction is, and there may be some overlap. However, in general a home help undertakes cleaning duties, whereas home care workers concentrate on personal care, and may be forbidden to undertake any cleaning.

  • Care

    The variety of care is very substantial. In fact the word ‘care’ is used in such a range of ways that, to a degree, it has lost much of its original and particular meaning. In this chapter we focus on ‘care’ in the sense of the formal provision of services by mainly statutory health or social care bodies for people with Multiple Sclerosis and their families. The degree to which such services constitute individual ‘care’ as considered for people with MS and their families is a matter of (their) judgement. Indeed the perennial issue for people with MS is the degree to which health care and social care services can meet both the diversity and scale of their care needs.

  • Sheltered housing

    Sheltered housing is accommodation specially built for people who may need some additional supervision or support to that normally available, but who still wish to maintain a substantial degree of independence. There are various forms of supervision and support: some accommodation just has a warden on site who can be contacted in an emergency; other sheltered housing is relatively high dependency where staff assist with meals and personal care, but where there is still some privacy and independence.
    Providers of such accommodation include local authorities, housing associations and private companies, or sometimes a combination of one or more of these. Usually the Housing Department of your local authority will be able to give you information on providers of such housing in your area.

  • Re-housing

    It may be a good idea to look at whether other housing might be better for you. This may well depend on your finances, and on whether you own or rent your current home. Even if you do own your own home, you could still discuss the situation with the Housing Department of your local authority; also, housing associations operating locally may have a special interest in people with disabilities.
    The Housing Department has a responsibility for considering people’s housing problems whether or not they own their own homes. However, how far you get in your request will depend on several factors, including the severity of your problems, housing resources available locally, your financial situation, the demand for the type of housing you may wish to apply for, and any particular local conditions (financial or otherwise) attached to local authority re-housing.
    You can apply to go on the housing register of your Local Authority (which often used to be called the waiting list). This is the main route to permanent housing. It is important that, whatever your circumstances, you go on the housing register if you require permanent accommodation.
    For the register, you will be asked to provide basic details such as your name, the number of people in your household and whether they are under 10 years of age or over 60 years old, and your address. Further information that may be held on the register could include details of any disability involved and specific housing requirements.
    After the council has agreed that you are eligible to go on the housing register, your re-housing priority will be decided. The council will look at your circumstances, your present accommodation, and what kind of accommodation you require, using the information that you give them on the application form and medical form to decide your priority. Under the Housing Act 1996, the council has to give reasonable preference for re-housing to the following people:

    • people occupying unsanitary or overcrowded, or otherwise living in unsatisfactory, housing conditions;
    • people occupying housing accommodation that is temporarily occupied on insecure terms;
    • families with dependent children;
    • households consisting of or including someone who is expecting a child;
    • households consisting of or including someone with a particular need for settled accommodation on welfare on medical grounds;
    • households whose social or economic circumstances are such that they have difficulty in securing settled accommodation.

    Additional preference is given where a member of the household has a particular need for settled accommodation on welfare or medical grounds and who cannot reasonably be expected to find settled accommodation themselves in the near future. This can include those who are particularly vulnerable as a result of old age, physical or mental illness, and/because of a learning or physical disability. If a person in this situation could live independently with the necessary support, but could not be expected to secure accommodation on their own initiative, then they should get additional preference for re-housing.
    The main categories affecting people with a disability as a result of MS are the first and fifth bullets above. The first category could be relevant if you are a disabled person living in inaccessible housing. This could constitute unsatisfactory housing conditions. The fifth category is for people who need settled (i.e. long-term) accommodation on welfare or medical grounds. When assessing medical grounds, the council will be expected to take into account advice from medical professionals. Guidance from the Government to local councils make it clear that this fifth category is designed to apply to disabled people.
    The council may involve Social Services and Health Authorities in assessing whether a household has a particular need for long-term settled accommodation. You can receive reasonable preference for re-housing under more than one category, so you can ‘build up’ your priority for re-housing. For example, you could have priority for re-housing because of your disability as well as because you have dependent children.
    If you are seeking to move either to another house as an owner- occupier, or into the privately rented sector, you will probably realize that there is no central register, or one key source of information, on which properties are ‘disability friendly’. Although recent legislation has required all new houses being built to be more disability friendly than they were, clearly there is enormous variety amongst the existing housing stock in terms of its suitability for people with mobility or other difficulties.
    Finding accessible housing can be difficult. Estate agents do not routinely inspect properties for their accessibility. In order to avoid wasted visits to estate agents or letting agencies, you should write to any in your chosen area setting out briefly the basic requirements you are looking for. Try to make them simple and straightforward and do not necessarily expect them to understand what, for example, a wheelchair user would require. Always be aware of the possibility of adapting a property.
    It is also worth looking in the disability newspapers and local disability newsletters for advertisements from disabled people selling or renting out properties. You could also consider placing an advertisement in one of these asking if anyone has a suitable property for sale or rent. Contact your local disability organization to see if they know of suitable properties in the area, or whether they let you put up an advert in their offices or centre. There may also be a Disabled Persons’ Housing Service, Disabled Persons’ Accommodation Agency or Register in your chosen area. These not-for-profit organizations will be able to help you find suitable property to buy or rent.

  • Getting help for housing repairs

    If you are living in an older property, or even if you are not, there may well be an issue about the property needing repairs. As we have seen in the section above, the possibility of financial support of adaptations to your property might well be linked, amongst other things, to its current state of repair.
    If you are not able to pay for repairs yourself, you may be able to get a renovation grant from the council. This is likely to be the case if your home needs extensive repair or improvement work, or if you lack a basic facility such as an indoor toilet or a bath or shower. Home owners and some tenants, although not council tenants, can apply for a renovation grant. You should not assume that you will automatically receive a grant, as they are awarded at the discretion of the Local Authority. The grant is subject to a means test, which assesses how much you will have to contribute towards the cost of works. You will have to contact your local Housing Department for further information and an application form.
    Grants of up to ?2000 can be made, or up to ?4000 for separate applications for housing repairs in any 3 years. Home repair assistance is a discretionary grant. The main purpose for which the grant is available is smaller-scale, but still essential, repairs or adaptations. This grant is open to home owners and tenants of private landlords and housing associations. Home repair assistance need not involve an occupational therapist assessment or a means test, although practices vary from one area to another. It is important that applicants ask the council for guidelines on who has priority for the grant in their area before they start putting information together for the application.

  • Getting help for housing adaptations

    One of the issues that may be a major consideration to someone with MS as well as those living with them, is the need – at some point – to consider adaptations to their home to ensure that everybody can live comfortably and easily in it. A variety of adaptations may prove necessary, although each individual person may well require a different pattern of such adaptations. They are likely to range from installation of stairlifts, to adaptations to living rooms, bedrooms, kitchens, bathrooms and toilets, to making access easier both within the property, as well as into and out of it. Obviously many possible adaptations will not only depend on your own disabilities, but also on the nature and state of the property that you are currently living in.
    If you consider that you cannot continue to live in your current house without changes to the accommodation, there is a grant called the Disabled Facilities Grant (DFG) for which you may be eligible. This is available for owner occupiers, private and housing association tenants, and landlords, and is given by the department of the local council responsible for housing. The person with MS need not personally make an application, for others can do this for them, although they have to demonstrate their right to do so. The maximum mandatory amount that can be awarded is ?20,000, although local authorities have discretion to award more than this.
    Mandatory and discretionary awards are given for different purposes. Mandatory grants can be used to:

    • facilitate access to and from the property concerned;
    • make the property safe for those living in it;
    • ensure the disabled person can access the principal family room;
    • adapt the kitchen to enable the cooking and preparation of food independently;
    • provide access to a room used for sleeping;
    • provide or improve access to the toilet, wash basin, bath
    (and/or shower);
    • improve or provide a heating system in the property for the disabled person;
    • adapt heating, lighting or power controls to make them easier to use;
    • improve access and movement around the home to enable a disabled occupant to care for another person who normally lives with them.

    Discretionary awards can be used to adapt the property to make it more suitable for the accommodation, welfare or employment of the disabled occupant.
    There is a means test – both of the disabled person and what are called
    ‘relevant persons’ – for this Disability Facilities Grant, and you might have to contribute to the cost, depending on your financial situation. For most people with MS, the relevant person will be their spouse/partner – in addition to themselves, or a parent(s) if the person is under 18. The financial assessments are quite complicated and take into account savings (above ?5000), as well as weekly income, set against an assessment of needs as recognized by allowances that the person with MS may have. RADAR has produced an information pack entitled Meeting the Cost of Adaptations which you may find helpful.
    If you feel that you cannot afford what the local authority indicates you should contribute, then you can ask the Social Ser vices department to make a ‘top up’ payment or loan. The department can also help with top-up funding for a DFG if the cost is above ?20,000 and the council housing department is only giving a grant up to the
    ?20,000 limit for mandatory Disability Facilities Grants. Such (albeit discretionary) support has been important to many disabled people who could not obtain full funding for adaptations through their Disability Facilities Grant.
    Note that certain adaptations are zero rated for VAT purposes, i.e. the builder will not charge you 17.5% VAT on top of the bill for certain jobs, saving you about a sixth of the bill. Such zero rating will normally include the construction of ramps, widening of doorways and passages to facilitate access by a disabled person; installation of a lift between floors to facilitate access, including maintenance, repair and restoration of decorations, and works to bathrooms and toilets to facilitate use and access by the disabled occupant and any goods supplied in connection with this.
    Overall, in deciding whether to make an award, the housing department of the local authority will consider, in consultation with social services, whether the works are necessary and appropriate to the needs of a disabled person. They will also consider whether the adaptations are reasonable and practicable taking into account the age and condition of the property. This might lead to alternative possibilities being considered. These might include urging the disabled occupant to seek a renovation grant to make the property fit, considering whether a reduced level of adaptations to the property would be feasible, and finally considering with the disabled person the option of re-housing. One organization offering help in relation to agencies who can assist you on these issues is Care and Repair.

  • Housing and home adaptations

    Housing issues can become particularly difficult for people with MS and their families. This may be because funds to support your existing accommodation as you have become used to it become less through having to work part-time or indeed having to give up work altogether. Of course, other difficulties, especially related to decreasing mobility, may mean that your existing accommodation, or a significant part of it, could become harder and harder to manage without adaptation.
    Most people with MS will wish to stay in their own homes. Factors affecting any decisions to stay or move will include your income, how easy the home is to adapt, and what kinds of services are available from the local Social Services and Housing Departments.

  • Finances: Managing finances

    Power of Attorney

    You may, at some point, feel the need for someone to take over your financial arrangements. If so, you will almost certainly need good legal advice, perhaps at first from Citizens Advice if you have not already got a good solicitor. Because this situations tends to happen when you get older, and some good documentation is available from Age Concern, especially their Factsheet Number 22: Legal Arrangements for Managing Financial Affairs. There are two versions, one for England and Wales and the other for Scotland. Age Concern offices will have these available.
    There are a range of options that a relative (or friend) might consider, from very limited permissions to deal with specific issues, to more all embracing powers, including what is called an Enduring Power of Attorney, which enables someone to act virtually in all respects on your behalf in financial matters. A special form is necessary for a Power of Attorney, which gives someone the right to act for you; you will need to sign it, as will your relative and a witness – usually not a family member, but someone who is independent. If, after signing, you become incapable of understanding the situation, then your relative will need to apply to the Court of Protection (part of the Supreme Court) for the Power of Attorney to be recognized, so that he or she can continue to act without your formal consent. If you cannot understand the situation and a Power of Attorney has not been obtained, your relative will have to apply to the Court of Protection (in England) requesting it to act as the
    ‘Receiver’ of your affairs.
    The complex procedures are designed to ensure that a decision to take over someone else’s financial affairs is not taken lightly. It does mean that it is far easier, and less costly, to try and deal with this problem at an early stage, when it can be done with the understanding and agreement of all parties.
    By the way, it is also important to make your Will, if you have not already done so; it becomes a complex area of law when a person has failed to make a Will, and subsequently interpretations have to be made of their wishes or intentions.

    Financially planning for a child when you have Multiple Sclerosis

    If you have not yet written a Will, you ought to do so. Consider the nature of your estate (including your house if you own one), and how best to ensure that the part of it you wish to use for your child is available, with the least taxation as is legally possible on your death. Even if you have made a Will, you may need to ensure that the process of passing on resources is as tax efficient as possible. You will almost certainly need to seek legal and financial advice. If you do not already have a solicitor, get advice first at Citizens Advice in your area.
    Another issue is whether it is sensible to transfer some of your assets at an earlier stage than your death to your child. This may have some long-term tax advantages. On the other hand it may reduce the eligibility of your child for certain state benefits both currently and in the future.
    Also, another thing to consider is whether your child is likely to be able to manage his or her own finances if you die, and you might need some arrangement whereby someone can manage the financial affairs – in the child’s interests, of course. There are a number of formal ways in which this can be organized – through the setting up of a Trust with your child as a beneficiary, for example. These considerations are invariably complex and need a detailed knowledge of the relevant legal situation; you need sound judgement about the long-term as well as the short-term financial consequences of the chosen course of action. It would be unwise to make major decisions on these issues without impartial advice.