Having a break also means that the person you care for has the benefit of a break from you, a change of scene, other people to talk to, and other things to talk about. And it will make your life easier if ever you have to leave the person you care for with someone if they are used to it happening occasionally.
What you arrange will depend not only on what you and the person you are caring for need but also on what is available locally and how much it costs.
Whatever arrangements you make, try to involve the person you are caring for in the decisions. It can help to introduce the temporary provider of care gradually so that everyone can get used to each other. Make sure the person who is taking over from you is thoroughly briefed about routines and any essential information and give them a contact number in case of an emergency.
These should all be listed in the phone book. If you can’t find the phone number ask at your local library or council offices.
Care at home
Care at home may be provided by a range of organisations including social services*, the health service, voluntary organisations and private organisations. Family or friends might be able to come in, either on a regular basis or occasionally. What you arrange will depend on your relative’s needs and on what is available locally
Sitting services are run by voluntary organisations, local authorities, district health authorities, or a combination of these. Volunteers may just sit with or ‘mind’ the person or they may prepare a meal or get the person up and wash and dress them. They are not usually trained but have usually had experience of caring. There may be a charge. The organisation Community Service Volunteers can sometimes arrange for a young volunteer to live in with the person you care for Some private agencies also provide sitters but these can be expensive.
Care attendant schemes
Like sitting services, care attendant schemes are run by voluntary organisations, local authorities, district health authorities, or a combination of these. Care attendants are trained and paid to provide help of various kinds in the home, including sitting and talking with the person you care for. Some care attendant schemes can provide relief care at night. There may be a charge.
Help from Social Services
The largest network of voluntary schemes is Crossroads Care. There are around 200 Crossroads Care Attendant Schemes in the UK. The Leonard Cheshire Foundation also has 40 ‘Care at home’ services in the UK providing practical help for people with disabilities and their families
Help from social services*
Local authorities have a duty to assess the needs of people who are sick and disabled (including older people). Assessments are done by the social services department. If the person you care for is assessed as needing help the local authority will decide whether it can arrange or provide the services which they have been assessed as needing. From April 1997 your social services department can, in some cases, provide cash instead of services.
Some local authorities do not have enough money to provide all the services needed. This means they usually have eligibility criteria for who gets respite care. You will need to argue that your need for respite is very urgent. If they agree that you need respite then they must prove it. If there is not enough money to go round, priority is usually given to people who live alone or who are terminally ill.
If the social services department assesses the person you care for as needing help with care at home, it may offer one or more of the following:
- home help or domiciliary care for help with household tasks such as cleaning or shopping;
- a sitter or care attendant;
- meals on wheels for people who cannot cook for themselves.
If you are finding it very difficult to look after the person you care for and you are not offered the help you think you need, tell the social worker who did the assessment. Under the law, you have a right to be assessed separately as a carer. In the long term it is cheaper for the local authority to support you now, when you need some help than to pay for permanent care for your relative if you have to give up caring through exhaustion or ill-health.
If you feel an assessment was unfair or not conducted properly, you can complain, using the social services department’s complaints procedure.
If the person you care for is already receiving a full package of care from the social services department but there are still unmet needs, the local authority may be able to ask the Independent Living Fund to pay for any extra care needed although the criteria for this are very restrictive.
Most social services departments make a charge for the help they provide. The amount charged may depend on the income and savings of the person you care for. Your own income and savings should not be taken into account.
*Contact the Health and Social Services Trust if you live in Northern Ireland. In Scotland, social
services departments are called social work departments.
The GP of the person you are caring for may be able to arrange for some care at home, including:
- visits from a district nurse, for example to change dressings, give injections or help with bathing or toileting;
- twilight (‘tucking up’) services-these are usually only available to people who live alone or who are terminally ill
- Night services-a few health authorities will provide night services but most do not.
There is no charge for health care but whether you get it or not depends on whether you meet the health authority’s criteria.
Paying for private help
You might be able to arrange privately for someone to provide care at home. The main advantage of this is that you can arrange exactly the kind of help you need. For example, you might need help at night sometimes if you are providing 24-hour care for someone. The local authority and health authority are unlikely to offer this kind of service and paying someone may be the only way you can get an occasional night off. To get the help you need, you can either use an agency or recruit the help yourself.
Using an agency
Although using an agency is usually more expensive than recruiting care yourself, it has the advantages of:
- taking care of the paperwork;
- dealing with an employee’s National Insurance and tax;
- checking references;
- providing a back-up if an employee is ill or unsatisfactory
Agencies are listed under ‘nursing agencies’ in the Yellow Pages or the local Thomson directory. The UK Home Care Association is a professional body for agencies which provide care at home. You can contact them to find out if there are any member agencies in your area. When you first contact an agency, check that they deal with private clients like yourself and whether they recruit both qualified nurses and care attendants.
Recruiting help yourself
To recruit help yourself, you can advertise locally or nationally:
- Locally, you can place an advertisment in a shop window, local newspaper or JobCentre;
- Nationally, you can place an advertisement in The Lady or Choice
If you decide to recruit help yourself, you will need to:
- check out references carefully;
- take on all the responsibilities of an employer, including:
- providing a written statement of terms and conditions of employment
- paying statutory sick pay if an employee is ill;
- paying towards their National Insurance contributions;
- sorting out an employee’s income tax;
- taking out insurance to cover any accidents an employee might have in your home.
You may also be liable to pay compensation if you dismiss an employee unfairly or make them redundant.
For further information and advice, contact your local citizen’s advice bureau or read "Recruiting and Employing a Personal Care Worker" by M Dunne and J Hoyle.
Day care away from home
Day care away from home can give you a complete break, when you can catch up on chores, do something you enjoy, go shopping, work, or spend time with family or friends. You might want a regular break, perhaps on a daily or weekly basis, or you might want an occasional break, perhaps a week off twice a year to recharge your batteries.
Day care for children
A range of day care for children is provided by voluntary organisations, local authorities, district health authorities, local education authorities and government schemes. Some of these may offer places for children with special needs. There may be a small charge for some places.
Nurseries - these are run by the local authority or privately.
Family centres - these are usually run by the local authority for families with special needs.
Pre-schools or playgroups - these are run by the local authority or as a voluntary organisation with parental involvement.
Opportunity groups for pre-school children - these are run by the local authority or a voluntary organisation to provide for children with special needs alongside other children.
Play schemes and clubs for school age children - these are run by the local education authority or a voluntary or private organisation. Some special schools may organise their own schemes.
Contact the under-eights adviser at the local social services department* for more information.
Day care for adults
Day care for adults is provided by voluntary organisations, local authorities, district health authorities, local education authorities and government schemes. There may be a small charge for some places.
Day centres - these are run by local authorities and voluntary organisations and provide an opportunity for adults to meet and take part in organised activities such as craftwork, games, singing, and quizzes. They usually provide meals and transport. Some day centres also provide rehabilitation or teach skills.
Lunch and social clubs - these are run by local authorities, voluntary organisations, or religious or community groups to provide company and recreational activities in an informal way. Lunch clubs also provide a meal. Transport may be provided.
Day hospitals - these are run by the health authority for patients who are ill or disabled and who live at home but need specialist medical treatment or care. Most day hospitals provide recreational activities and some provide rehabilitation. Transport can be provided by ambulance. Education, training and work centres - these are run by colleges, adult education institutes and voluntary organisations. They may offer education, retraining and job advice. Contact the Disablement Resettlement Officer at your local JobCentre for more information.
* Contact the Health and Social Services Trust if you live in Northern Ireland. In Scotland, social services departments are called social work departments.
Residential breaks are helpful if you want the house to yourself for a while, you need a good break, or you are going to be away and can’t leave the person you care for at home. A residential break can also provide the person you care for with a change of scene and the chance to meet new people. There are a number of different kinds of residential break including:
- respite health care;
- short stay in a residential care or nursing home;
- family-based respite care.
Respite health care
Respite health care is usually provided in a hospital, but it is sometimes provided in a hospice.
Hospital care - Respite health care in a hospital is provided by the health authority and is therefore free of charge. If someone is in hospital for more than four weeks some benefits may be affected.
Hospices - Hospices are usually run by charities and are therefore free of charge. They are mainly for people with cancer and other serious illnesses. Staying in a hospice does not affect benefits. To find out more contact the Hospice Information Service.
Residential care and nursing homes
Some residential care and nursing homes will take people for a break of a week or two. All nursing homes have qualified nursing staff. If the person you care for isn’t going into a private home, the local authority may arrange short-stay care in a home. For stays of up to eight weeks the local authority will normally make a flat-rate charge but it may decide to do a means test, following the same procedures as for permanent care. For stays of more than eight weeks, the local authority must do a means test, following the same procedures as for permanent care.
The person you care for will be expected to contribute most of their weekly income towards the cost but, unlike the case of permanent care, the value of their property is not taken into account. If the person you care for has more than £16,000 in savings they will almost certainly be expected to pay for their own stay in full.
Family-based respite care
It may be possible for the person you care for to stay with another family. Breaks can be arranged from a few hours to two or three weeks. Some schemes are run by local authorities and others are run by voluntary organisations. Most schemes are for children but there are also a few schemes for older people. Support families are selected very carefully, and given training and support and sometimes a small allowance. Most schemes for children are free but there may be a small charge for adults. Ask your local social services department or contact CNA’s CarersLine to find out whether there is a scheme in your area.
You might want to take a holiday on your own or the person you care for might want a holiday either with you or on their own. There are a number of possibilities both for people holidaying alone and for people with special needs or disabilities.
Taking a holiday alone
If you want to go on holiday alone, you will need to consider respite care for the person you care for (see above). If you have no one to go with and you don’t like the idea of travelling alone, you might want to think about:
group holidays - these often focus on a particular interest or sport such as walking or football;
holiday introductions- people who want to make their own holiday plans can be put in touch with similar people to travel with.
If you can’t afford to pay for holiday accommodation, you might like to consider:
- home sitting, where another householder pays you to live in their home, possibly looking after their plants, pets etc
- home exchange schemes, where two householders swap homes for their holidays. There are a number of schemes which cater specifically for people with special needs.
If you have been getting ICA for 22 weeks you can have a holiday on your own for four weeks in any six-month period and still get ICA. A holiday for the person you care for Although some people who are cared for may find it difficult to change their routine, many welcome a holiday as an opportunity for a change of scene and the chance to meet new people.
There are a number of holiday schemes and organisations offering holidays for people with special needs. Some holiday homes can also provide nursing care.
Local authorities have a statutory duty to help people who are elderly or disabled to have a holiday if they assess it as needed. Some councils give grants; others organise holidays themselves. This kind of help is difficult to get, however, as there are usually lots of families wanting it and most local authorities have strict eligibility criteria.
A holiday together
If you go on holiday together, you will continue to get ICA providing the person needing care is getting the care component of Disability Living Allowance or Attendance Allowance.
Getting financial help
You may be entitled to benefits that you are not claiming and which might help to pay for extra care. Ask a Citizen’s Advice Bureau or the CNA’s CarersLine to do a complete benefits check for you.
The Social Fund gives lump-sum payments, grants and loans, mainly to people who are getting Income Support. Social Fund payments are made by local benefits agencies.
Charities and benevolent funds
Charities and benevolent funds have a range of grants and loans to help pay for things that the government doesn’t fund. Most of them are listed in a book called A guide to grants for individuals in need. Libraries and advice centres usually have a copy.
Community Service Volunteers
237 Pentonville Road
London N1 9NJ
Tel: 020 7278 6601
Matches volunteers with organisations or individuals needing help.
UK network of care attendant schemes
10 Regent Place,
Warwickshire CV21 2PN
Tel: 01788 573653
49 Charles Street
Cardiff CF10 2GD
Tel: 029 2022 2282
Northern Ireland -
7 Regent Street,
County Down BT23 4AB
Tel: 028 91814455
Care Attendant Scheme
24 George Square,
Glasgow G2 1 EG
Tel: 0141 226 3793
Leonard Cheshire Foundation
London SW1P 4QD
Tel: 020 7802 8200
UK ‘Care at home’ services
Hospice Information Service
c/o St Christopher’s Hospice
51-59 Lawrie Park Road
London SE26 6DZ
Tel: 020 8778 9252
Information about home nursing and respite care for people with cancer or terminal illness.
5 Tavistock Place
London WClH 9SS
Tel: 020 7916 6055
Support for relatives of people in nursing and residential care homes.
UK Home Care Association
42 Banstead Road
Surrey SM5 3NW
Tel: 020 8288 1551
Professional body for agencies providing private care.
Tel: 020 7379 4717
To advertise for private help.
Tel: 01733 555123
To advertise for private help.
Disablement Income Group
Archway Business Centre
19-23 Wedmore Street
London N19 4RZ
Tel: 020 7263 3981
For copies of Recruiting and employing a personal care worker (£3.50 inc postage).
Holiday Care Service
Surrey RH6 9HW
Tel: 01293 774535
Information about holidays for people with special needs including people with disabilities.
The Royal Association for Disability and Rehabilitation (RADAR)
12 City Forum
250 City Road
London EClV 8AF
Tel: 020 7250 3222
Information about holidays for people with disabilities
Buckinghamshire HP22 5LQ
Tel: 01926 630730
Information about house-sitting holidays
Home Exchange Holidays
Special Families Trust
Devon PL7 3AU
Tel: 01752 346812
36b Clarence Road South
Somerset BS23 4BW
3 Orchard Court
Wiltshire SN14 7AD
Tel: 01225 892208
For information about holidays for people on their own:
Solos (for 30+)
54-58 High Street
Middx HA8 7EJ
Tel: 020 8951 2811
Saga (for 60+)
Kent CT20 1AZ
Tel: 01303 711111
For information about holiday introductions:
2 Coxhill Cottages
Hants SO41 8PF
Tel: 01590 683005
52 York Place
Bournemouth BH7 6JN
Tel: 01202 431520
Carers National Association
Carers National Association is the voice of carers in the UK. Our work involves:
- raising awareness at all levels of government and society of the needs of carers,
- helping carers become more aware of their own role and status in the community, providing information,
- advice and support to carers,
- enabling them to make their own choices about providing care.
If you have any questions or any other queries about caring, please contact our CarersLine on: 0808 808 7777 (Monday-Friday l0am-midday and 2pm-4pm).
Carers National Association
20/25 Glasshouse Yard
London EC1A 4JT
Tel: 020 7490 8818