Social needs of patient and family

Changed relationships
Finance
Adapting homes

The aim of successful rehabilitation is to enable the patient to live as satisfactory and fulfilling a life as possible. This will mean different choices and decisions for each individual depending on the degree of disability, the family and social environment, and preferred lifestyle.

The vast majority of patients want to live in their own homes and not in residential care, and very severely disabled people achieve this successfully. Many will live as part of a family or, increasingly, choose to live independently with support from community services. Caring for People (Cm 849, 1989) recognised this, and in April 1993 the legislation was enacted, facilitating provision of care in the community, and for the first time the needs of carers were specifically mentioned. The Independent Living Fund (1993) has made payments to people with severe disabilities to enable them to purchase care to supplement that provided by family and local health and social services. The introduction of Direct Payments provides opportunities for people to take control of their local authority funded packages. Resource shortfalls, however, are causing increasing difficulties.

Where patients are living: figures based on acute injury discharges from The Duke of Cornwall Spinal Treatment Centre 1998–99:

Where patients are living	%
Living with relatives after discharge	29
Living independently or with partner on discharge	57
Required interim residential care on discharge	7
Transferred to other hospital	7

For most people spinal cord injury demands changes in almost every aspect of life — personal relationships, the physical structure of the home, work and education, social and leisure pursuits, and financial management. Consequently, exhaustive and careful planning by the spinal unit staff and staff responsible for community services, in conjunction with the patient and family, is essential. Because of the complexities and scale of what is required, this planning should start as soon after injury as possible. Planning before discharge is only the start of a lifelong, probably fluctuating, need for services. In providing these, the social and emotional wellbeing of the person and family must be considered along with physical health. Physical health supports and is supported by a satisfactory lifestyle.

Changed relationships

The onset of severe disability can have profound effects, not necessarily damaging, on existing personal relationships and on the formation of new relationships. Disability will change the roles people have in a relationship: for instance, some may find that they have to manage the family’s financial and business affairs for the first time, or others may have to undertake extra household tasks. The able-bodied person — husband, wife, partner, son, daughter or parent — may have to provide intimate personal care. The 1995 Carers Act makes it possible for carers to have assessments of their own needs if the person they care for has an assessment under the NHS and Community Care Act 1990. Further legislation aims to make these assessments available to carers in their own right, through the Carers and Disabled Childrens Act 2000.

Primary care team discusses discharge plans with patient and family.

The workload of everyone concerned is likely to be much greater. For many couples an active and satisfying sexual relationship will be possible, but it will be different. These changes, in addition to the feelings engendered by loss of function and its actual cause, are likely to have major repercussions.

Many spinal cord injuries happen to late adolescents or young adults at the stage when they are beginning to form relationships and establish independence from parents, and they may be very concerned about their ability to do so. It takes time and the realisation that people do think that they are still worthwhile before necessary self-esteem can return. These adjustments are likely to take place after discharge from hospital because then the issues become clearer. Many people find that the initial period after discharge can be very stressful.

Work is of varying importance to patients, but most will see it as giving a sense of purpose to their life and crucial to their self-esteem, and will want to return to their former occupation if at all possible. Early contact with the patient’s employer to discuss the feasibility of eventual return to his or her previous job is important. If the degree of a patient’s disability precludes this, some employers are sympathetic and flexible and will offer a job that will be possible from a wheelchair. However, many patients initially find life outside hospital difficult enough, having to cope with their disability and adjust to living again in the community, without having the added responsibility of a job. In these circumstances a period of adjustment at home is advisable before they return to work, as it may be two or three years or longer before a patient is psychologically rehabilitated.

Patient and family in hospital.

If patients are keen to return to their previous job, school, or college, the occupational therapist should assess the suitability of the premises for wheelchair accessibility. Recommendations are then made to the placement, assessment, and counselling team (PACT) or local education authority, if alterations to the buildings or the installation of specialised equipment are needed to make them suitable for the patient.

When such patients feel ready to consider some alternative employment they can contact their local disability employment adviser.

If patients are considering returning to work, time spent in a rehabilitation workshop can be helpful. In this environment they should be able to test their aptitude for activities such as carpentry, engineering, electronics and computer work, build up their strength, concentration, and stamina, and have a clearer idea of their employment capabilities.

Good community support, including practical help with the tasks of caring, and also the imaginative provision of resources to enable the person and carers to participate in normal community activities, are likely to help the process. Tired people who have limited social satisfactions will find it more difficult to make the necessary adjustments.

Counselling can be a valuable source of help in making these adjustments. Studies indicate that people with spinal cord injuries are not as psychologically distressed or depressed by their injury as able-bodied people, including experienced staff, imagine. Many people with spinal cord injury do lead active fulfilling lives, though this may take time to achieve.

Finance

Adequate finance is a major factor in determining successful rehabilitation, but many severely disabled people are living in poverty.

Not only do patients and their families have to cope with all the stresses of injury; they may have to live on a severely reduced income which cannot support their existing lifestyle. It is also more expensive to live as a disabled person. Disability Living Allowance, or Attendance Allowance for over 65 year olds, provides some help with the more obvious costs, but no provision exists for tasks such as decorating, repairs, and gardening, which the disabled person may no longer be able to perform.

Even if the person receives financial compensation this may take several years to be granted, and though interim payments can be made, in some circumstances they are not always available at the time of discharge from hospital, when there is likely to be major expenditure on either moving or adapting the present house.

Because of the interruption in, or possible loss of, earning capacity many people will be dependent for long periods on welfare benefits administered by the Department of Social Security. These are complex, and various studies have shown that many disabled people are receiving less than their entitlement, sometimes by quite substantial amounts. It is therefore important for those working with disabled people to be aware that they may be underclaiming benefits and to advise them accordingly.

Finance — major factor in determining successful rehabilitation:

Welfare benefits often complex
Disabled people often receive less than their entitlement
Disabled people need advice on benefits due to them

Benefits commonly available to disabled people:

Benefits to assist with disability	- Disability Living Allowance (DS 704) - Attendance Allowance (if over 65 years of age) (DS 702) - Disabled Person’s Tax Credit (information available from the Inland Revenue) - Industrial Disablement Benefit (DB1) - NHS Charges and Optical Voucher Values (HC12) - Help with Health Costs (HC11)
Income maintenance benefits	- Statutory Sick Pay (for 28 weeks) (information available from the Inland Revenue) if in employment and not self employed or - Incapacity Benefit (IB1+IB203) up to 28 weeks if self-employed or unemployed. After 28 weeks for all groups. Dependent on sufficient National Insurance contributions (SD2). If 16–20, or under 25 and in full time education, contributions discounted
If not enough contributions	Income Support (IS20) means tested (SD2) - Severe Disablement Allowance (if eligible) (SD3) if claimed before April 2001. Discounted since then for new applicants
Income Support will "top up" any of the above if income is below the assessed needs level.	War Disablement Pension (WPA—leaflet—1) - Housing Benefit and Council Tax Benefit (administered by district councils) (RR2) - Invalid Care Allowance (SD4) (paid to some carers) - Working Families Tax Credit (information available from the Inland Revenue)

DSS leaflet numbers are given in parentheses

Adapting homes

Most houses are unsuitable for wheelchairs unless adapted. Disabled Facilities Grants may be available to assist with the cost, but for many people help is limited because mortgage repayments are not taken into account in the financial assessment. Housing presents a continuing problem because, though patients may return to an adapted house or be rehoused from hospital, they may well want to change house in the future, especially as spinal cord injuries typically occur in young people who would normally move house several times. A disabled person may have difficulty in finding a suitable house, and there can be time restrictions on further provision of grants for adaptations. There are also mandatory and discretionary limitations on grants which may be made available to assist in the adaptation of a property. Many people find the discrepancy between local authorities in their interpretation of the legislation around this frustrating. Many cannot afford to buy a house and will depend on council housing, housing association property, or privately rented property, all of which are in short supply. Consequently, any move can be difficult to achieve and has to be planned well ahead. The services of community occupational therapists, housing departments, and social workers may be required.

Ventilator-dependent tetraplegic with carer.

A considerable number of statutory services are concerned with providing services for disabled people. Voluntary organisations also provide important resources. They can act as pressure and self-help groups, and organisations of disabled people have the knowledge and understanding born of personal experience. There are many such organisations, of which the Spinal Injuries Association is particularly relevant.

Adapting homes — where patients go: figures based on acute injury discharges from The Duke of Cornwall Spinal Treatment Centre 1998–99:

Where patients go	%
Able to return to own home with adaptations	55
Had to move to live with relatives	11
Required rehousing provided by District Council or Housing Association	29
Required rehousing, patient or family bought property	5

To mobilise and coordinate these services, which often vary in what they can provide in different geographical areas, is a major undertaking. Too often disabled people fail to receive a service that would be of benefit or they may feel overwhelmed and not in control of their own lives, with consequent damage to morale and health. Disabled people and their families should have access to full information about the services available and be enabled to make their own decisions about what they need. The 1998 White Paper Modernising Social Services sets out government objectives for more partnership working, joint funding and uniformity of charging policies across local authorities which should make services more accessible to patients and with greater parity.

Typical adaptations funded either privately or in part by a Disabled Facilities Grant:

Ramped access to external doors
Widening of internal doors
Level access parking, with carport/garage
Level access shower
Toilet with access for shower chair
Accessible light switches, sockets, door locks
Accessible kitchen and facilities
Patio area in the garden
Thermostatically controlled heating system
Through-floor lift or stair lift
Internal ramps

Employment — what patients do: figures based on acute injury discharges from The Duke of Cornwall Spinal Treatment Centre 1998–99:

Employment — what patients do	%
In work or job left open	30
In education or training	10
No employment on discharge, but previously employed	38
No employment on discharge—not employed when admitted	22

Information and advice on benefits:

Department of Social Security (local office or DSS) Benefit Enquiry Line. Tel: 0800 882200
Citizens Advice Bureau
DIAL (Disabled Information Advice Line) (Name of town) — A voluntary organisation operating in some areas
Disability Rights Handbook (Price £11.50 post free); published annually by the Disability Alliance Educational & Research Association, Universal House, 88–94 Wentworth Street, London E1 7SA. Tel: 020 77247 8776.
Spinal Injuries Association — 76 St James’s Lane, London N10 3DF. Tel: 020 8444 2121 or 0800 980 0501. www.spinal.co.uk. email: sia@spinal.co.uk