Implementing the Carers (Equal Opportunities) Act 2004

Duty to inform carers of the right to assessment - Identifying hidden carers

Key research and policy findings

Practice points

Research and policy

Carers may not see themselves as being in need of services. Many may feel that they are simply carrying out ordinary responsibilities as part of a family: this is the case particularly with black and minority ethnic carers (14). Many carers of people with learning disabilities have continued their caring role well into their child's adulthood and may not see themselves as carers but simply as parents. Carers of people with stigmatised conditions (e.g. mental health problems, drug and alcohol problems) may be reluctant to make their needs known. It is important that local authorities are prepared to support vulnerable people should the informal care arrangements break down, thus finding hidden carers is an essential part of providing proper emergency cover.

See chapter 4 of the Listening to carers video

It is not, therefore, sufficient to rely on carers to identify themselves (15). The use of the word 'carer' in itself may be problematic for people unfamiliar with the term (6), (11). A number of writers have suggested that leaflets should ask: 'Do you look after someone?' rather than 'Are you a carer?'

Some carers may view the assessment process as a way of checking up on their ability to care (6), and this may discourage them from approaching social services. Carers may be more comfortable approaching voluntary sector providers for help because this avoids the stigma associated with accessing statutory services. Word of mouth is very powerful (6), and once carers have positive experiences and outcomes, they may encourage others to seek help. Black and minority ethnic groups are less likely than others to be aware of the systems within public services (14), and carers in these groups may have less awareness of their rights.

Many carers are likely to have first contact with the health service (16). GPs and pharmacies are in a key position to make contact with hidden carers. This highlights the importance for local authorities of working in partnership with health services when identifying hidden carers. The new General Medical Services contract for GPs encourages identification of carers and their referral to social services (17).

The Audit Commission report (12) found that, while carers found GPs helpful, the latter were not generally referring carers to social services. The Princess Royal Trust for Carers has published a good practice guide (18) that outlines methods for involving local health professionals in the identification of hidden carers. 'Caring about carers: a national strategy for carers' (p57) offers a checklist (16) for GPs and primary care teams.

Previous practice guidance (point 21) (2) offers a sample referral form that can be used to identify hidden carers within a locally agreed protocol. The agreement of such a protocol should increase awareness of referral procedures and the development of a shared understanding between related authorities. It may prove particularly useful where the cared-for person refuses contact with social care professionals. The protocol would allow others - for example, GPs or voluntary sector workers - to verify the eligibility of the carer.

A study in 1997 (5) emphasised the importance of concentrating on centres that ordinary people use in targeting hard-to-reach groups, as this will help to identify those who do not see themselves as carers. Minority community leaders were approached to arrange meetings in appropriate community centres. Culturally appropriate food was offered and a range of translation facilities were made available. It should be noted that community leaders may not be able to represent the views of all the people in their community, but they may be helpful in assisting initial contact with carers in more inaccessible groups.

Ideas from practice

Practice examples are self-reported and have not been evaluated.

Example: Carers profile report (51kb PDF)


‘Beyond we care too’ (57) is a review of the needs and experiences of Black and Minority Ethnic (BME) communities in Britain. The main report presents the results of a survey on the experiences of carers (and carer support services) in relation to the needs of the BME communities. The original report (We Care Too (58) remains an important document with key guidance and recommendations, which are still valid.

Both reports are available to download from The Afiya Trust's website.