SCIE Practice guide 5: Implementing the Carers (Equal Opportunities) Act 2004

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

Key research and policy findings

• People who carry out caring responsibilities do not always recognise themselves as 'carers' (11).
• Health professionals are in a key position to identify hidden carers.
• Health professionals do not routinely refer carers to social services (12).
• Participation strategies that rely on consultation with those who already receive services are likely to further marginalise hidden carers (5).
• Black and minority ethnic communities would welcome the involvement of their community representatives in providing them with information about available services (14).

Practice points

• Ensure that any information strategy includes additional key partners (e.g. local pharmacies, welfare benefits staff).
• Develop a local profile of carers based on available information (such as the Census) and use this information to identify target groups. Where possible, include details of diversity (e.g. ethnicity, age, sexuality).
• Ensure that information is produced in a variety of formats and is targeted to minority communities in the locality.
• Ensure that GP surgeries in your area have strategies for identifying hidden carers and, with their consent, referring them on to local support services.
• Promote joint working with other local services (e.g. through the secondment of carers' support workers to GP surgeries).
• Make links with schools and local youth services to raise awareness about young carers.
• Target the carers of people with mental health problems through the local psychiatric service.
• Target carers through voluntary organisations (e.g. Mencap, Mind, Scope, MS Society, Alzheimer's Society).
• Ensure that all adult assessments clarify whether the person being assessed has a parenting role (7), (8).
• Use a variety of resources to raise awareness - e.g. radio, internet, local meetings, outreach work, posters and leaflets.
• Involve the local press in promoting awareness about carers' issues.

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.

• Provider agencies that have contracts with the London Borough of Tower Hamlets pass on monitoring and statistical information about carers on a monthly basis. With the carers' consent, the local authority is informed of their caring role. Tower Hamlets have also developed a discount card scheme to encourage carers to make themselves known to social services:
  
  'The scheme offers a package of discounts (negotiated at no financial cost to the council) on a range of local goods and services, including discounts on chemists' goods, ironing, cleaning, reflexology, other alternative therapies, cinema and other leisure facilities and restaurants. Upon registration the carer is also encouraged to have a carer assessment. The authority then has a record of the number of carers who accepted or declined a carer assessment' (12).
• Carers' emergency schemes can be useful in encouraging carers to engage with services, especially where no other services are received. In 1997, West Sussex was successful in identifying large numbers of hidden carers through its Adult Carers Mobile Information Service (19). The project was originally funded by the Lottery, and due to its continued success and expansion - today it covers the whole county - it is now funded by West Sussex County Council through the Carers' Grant.
  
  The project consists of a mini-bus and staff who offer a mobile information service for carers. The service is a first point of contact and carers are referred on, with their consent, to a network of carers' support organisations in the area coordinated by the West Sussex Carers Network. The service aims to vary the times and places it visits to increase the numbers of people it reaches out to. Some staff work both on the bus and within the carers' support network, providing a link between the information service and the members of the West Sussex Carers Network.
• Camden Social Services has commissioned two voluntary sector organisations - the Princess Royal Trust Camden Carers Centre and African and Caribbean Elders - to provide a carers' support service within the Royal Free and University College London (UCL) hospitals. The service is specifically aimed at those carers requiring support with the hospital discharge process.
  
  The workers receive referrals in a number of ways - for example, from social workers and consultants, via multidisciplinary meetings and by visiting wards both during the day and in the evening to talk to visitors. The workers are hospital-based and support the carer during the patient's hospital stay right through to discharge, and in the initial stages following discharge. The carer may then be referred for more long-term support from the local carers' centre or other carers' organisations.
  
  The aims of the support service are to:
  • raise awareness of carers' issues among all health professionals in the hospital
  • identify carers and support them with the discharge process
  • encourage take up of carers' assessments
  • signpost carers to appropriate support services within the statutory and voluntary sectors
  • provide an advocacy role if required
  • ensure that discharge planning meets the needs of both patient and carer
  • prevent re-admittance
  • help sustain the carers' ability to care.
• In Norfolk, Crossroads runs a 24-hour helpline for carers. In partnership with other Crossroads schemes across the county, it gives carers access to short breaks at short notice and supports a range of information provision and outreach to hidden carers. In 2004-05, the development of the helpline included negotiating a research and policy project for the Norfolk Drug and Alcohol team to identify the support needs of carers - including young carers - of drug and alcohol abusers.
• During Carers Week (13-19 June 2005), Sunderland Carers Centre prepared four quick questions to ask callers who telephoned the Council's People First Contact Centre. Out of 431 people who agreed to answer the questions, 41 new or “hidden” carers were discovered who weren't aware of what support was available.
• Wigan Metropolitan Borough Council set up a GP registration scheme for carers with the aim of identifying hidden carers, the scheme was based on “Primary Carers - identifying and providing support to carers in primary care”  Princess Royal Trust for Carers, 2003. The scheme has led to the registration of over 1,000 carers. Every carer registered gets a questionnaire (36kb PDF) and as a result is sent a tailored information pack depending on the needs identified. Information from the questionnaires has led to the provision of carer training, an increase in take up in services funded by the carers grant and increased carer participation.
• Hertfordshire County Council have produced a DVD called Getting in Touch to help minority ethnic carers. There are versions in English, Gujarati and Punjabi. Online clips are available at www.hertsdirect.org/carers.
• In St Helens the council has organised a series of community events to promote wellbeing and benefit take-up. Many people attended and were able to access information and advice on a number of things such as falls prevention, healthy eating, support for carers and benefits advice. The revenues and benefits team were able to demonstrate that people who could not receive Carer's Allowance because of other income from work or pension could, because of their underlying entitlement to the benefit, claim a carer's premium on council tax and housing benefit and a number of other means-tested benefits.

Example: Carers profile report (51kb PDF)

Resources

‘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.