‘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.