Campaigning for carers services

Want better carers services in your area? Make sure that the right proportion of the mental health grant is spent on carers in your area.

What research is there to support my campaign?

Many local campaigners have successfully used the evidence below to push for a bigger slice of the carers' grant.

So how many mental health carers are there?

All of the surveys looking at this have extrapolated from a figure for the “adult” population of either Great Britain or of the United Kingdom. For the purposes of this essay, an adult is over 18 and the adult population of England, Scotland, Wales and Northern Ireland is approximately 46 millions, (CIA, July 2001). Men outnumber women in the 15-64 age range by about 400,000, but the converse is true for the 65+ ages by some 1.57 million.

The General Household Survey (GHS) is a continuous survey that has been running since 1971 and is based each year on a sample of the general population resident in private (i.e. non-institutional) households in Great Britain. The 1995 GHS (see above) estimates 13% of the population are carers, and out of a current 2001 adult population of 46 millions, that is some 5.98 million people. However, the test question for the 2001 Census came up with a figure of 24%, i.e. some 11.04 millions.

Herein lies the first of many difficulties and prejudices about who is a carer. The National Strategy for Carers, Caring about Carers, and the National Service Framework for Mental Health, both state, drawing on The General Household Survey (GHS) 1995 as developed in “Informal Carers” 1998, “Women are more likely to be carers than men – 58% of carers in Britain are women, compared with 42% who are men.” However, the 1995 GHS at no point uses those figures. “Informal carers” does say, “Women were more likely to be carers than men but the difference was not very marked, 14% compared with 11%. However, since there are more women than men in the total adult population of Great Britain, it is true that the number of women caring is considerably greater than that of men, 3.3million compared with 2.4 million”. “Informal carers” goes on to add only three paragraphs later, “The peak age for caring was 45-64. One-fifth of adults in this age group were providing informal care.” From the facts about gender distribution in the population already quoted, and the GHSs of 1985, 1990 and 1995, one could just as easily conclude that the gender distribution of carers in the 45-64 age range is close, a range when mental health caring as a parent often starts.

The GHS 1995 actually asked,
“You mentioned earlier what was the matter with …….. Could I just ask, how is he/she affected?
Is it …..

  • physically……………
  • mentally……………..
  • or both?……………..
  • Old age?
  • Other?”

The 2001 Census asks “Do you look after, or give any help or support to family members, friends or neighbours or others because of:

  • Long-term physical or mental ill-health or disability
  • Or problems related to old age”

In the small survey to test this question before the Census, carers of people with mental health problems only were 5% of the total, some 552,000. A further 8% were caring for people with both physical and mental health problems, some 883,200. Thus the 2001 Census could come up with a total number of mental health carers as 1,435,200.

This very confusing set of categories has thrown up the quote in “Informal Carers”, “15% were looking after someone with a mental and physical disability, and seven percent had dependants (sic) with a mental disability only”. But the GHS questions at no point use the word disability. By this quote some 22% of carers could be taken to be looking after someone with a physical and mental disability, some 1,315,000 people. This is made up of 7%, some 419,000 people looking after someone only “mentally “affected, plus 15%, some 897,000 carers for people with both mental and physical problems.

General Household Survey 1995 and Informal Carers 1998 Question testing for 2001 Census
Total  UK adult population 46 million  46 million
% and total number caring 13%, some 5.98 million 24%, some 11.04 million
% of total carers and numbers caring for someone with only mental health problems 7%, some 419,000 5%, some 552,000
% of total carers and numbers caring for someone with mental and physical health problems 15%, some 897,000 8%,some 883,000
% and total involved in all mental health caring 22%, some 1.315 million 13%, some 1.435 million

These figures do not include young mental health carers, who are estimated to be 33% of all young carers, (Becker and Dearden, 2001) . One Carers Helpline is said by its staff to receive 75% of its young carer calls from those looking after people with mental health problems.

Following these extremely variable figures, we can say that there is no objective truth out there. We can say that in a city population of 200,000, there are between 3900 mental health carers (GHS) and 7200 (Census 2001). When carrying out an inspection of mental health services in Cornwall, (pop 500,000), in 2001, where there could be 10,000 mental health carers (GHS) or 18,000 if the projection from the Census question testing programme is used, the SSI managed to ask only 2 carers in Cornwall for their views!

Measuring the degree of responsibility that carers, i.e., families and communities, have can also be seen in that the Department of Health estimates that 60-70% of all people on an enhanced CPA have carers. In a typical town of 200,000, Southampton, there are 1365 people on an enhanced or standard CPA. 1365 families and communities could easily be 2500 carers in a typical town, providing substantial and regular care at the highest levels of risk.

Not only are mental health carers out there in vast numbers, many have become experts by experience. The National Strategy for Carers says, “People who need care and the people caring for them know most about their circumstances. Those working in the statutory services, and especially those carrying out assessments, should recognise the expertise, perspective and circumstances of both carers and those they are caring for. ” Hogman, 1995, goes further, “Carers are experts in severe mental illness”.