Living with Dying

Care at home for people with a terminal illness: social services

Most people were living at home when we talked to them, though almost all had spent time in a hospital, hospice or nursing home. Many received care and other support from family, friends and neighbours, but others felt quite alone, and relied heavily on care provided by health professionals and by social services (see also 'Nursing').

If a person wants to remain at home the GP, or other health professional or family member can contact social services and request a Care and Support Needs Assessment. A health or social care professional then visits the patient, decides what personal services are needed and works out a 'Care Plan' - a written statement of a person's needs.

In theory, services at home are based on what a person needs rather than what the service can offer, but each area throughout the UK has its own guidelines and criteria for what is available.

One woman had spoken to the social services Care Manager while she was still in hospital. The manager had worked out a Care Plan for when she returned home. She found that although social services had agreed to the extra care she needed, the necessary help wasn't always available, particularly at weekends. The agency that social services used couldn't provide all the help that had been agreed. She also found the service inflexible. People would help her for the time that had been allocated but no more. She stressed that it is important to ask for what you need.

Another woman complained that her home care worker never made time for conversation. She also wished someone could take her out of the house for half an hour.

A woman with chronic obstructive pulmonary disease had daily help from social services. Home care assistants helped her to get up in the morning and they returned to help her get to bed at night. However, she commented that in her area social services no longer provided much needed help with housework or with shopping. Personal care was lacking too. She was offered help with showers only twice a week, which in hot weather was insufficient.

Other people, however, were pleasantly surprised by the services available to them, and thought that they were receiving enough support and personal care. A man with prostate cancer was offered Meals at Home Services (was known as Meals on Wheels*). He was also offered help with his cleaning. He also got valuable help and advice from Age UK when he needed a heater in his bathroom.

There are a number of benefits that people can apply for that can help with the cost of providing personal services:
Personal Independence Payment (PIP) is a benefit for people of working age (16-65) with disabilities (or those that are terminally ill) who need help with daily living activities or help getting around, or both. It has replaced Disability Living Allowance (DLA) for anyone making a new claim. PIP isn't based on National Insurance contributions and isn't means-tested. You can claim it whether you're working or not.
Attendance Allowance is tax free and isn’t means tested. It is paid to people over 65, to help with the cost of their care or supervision needs, which should have existed for six months before claiming unless you are terminally ill and then you can apply straight away (under DS 1500 special rules). Any level of Attendance Allowance can increase your entitlement to Pension Credit, Housing and Council Tax Benefits, and health benefits, etc. You can get the benefit even if you live alone with no help. As long as any help or supervision is reasonably required you could still qualify for Attendance Allowance.
Disability Living Allowance (DLA) for children is tax free and isn’t means tested. It is for people looking after children under 16 to help with the extra costs of looking after a child who needs supervision or help with their daily or nightly care needs or has mobility problems. They must have had these difficulties for at least 3 months unless they are terminally ill and then you can apply straight away.
(See also our sections on ‘Financial help’ and ‘Community care’)

Another man pointed out that social services have a legal obligation to provide certain care. He also suggested that the local minister or vicar might be able to arrange visitors for those who live alone (see also 'Support and counselling').

For more information, see our resources section.

* Meals at Home Services (Meals on Wheels)- Some councils provide meals delivered to your home, if you are eligible. This service varies across the country and you will need to contact your local council to see if they provide this service and whether you are eligible.

Last reviewed July 2017.

Last updated July 2017.


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