Support for carers

• ‘Carers’
• Information and advice
• Services specifically for carers
• Carers' groups
• Support from your GP
• Training for carers
• Carer's assessment
• Benefits
• Government support for carers
• Carer Strategy 'demonstrator sites'

‘Carers’

‘Carers’ is a term used to describe people who are supporting someone who needs help on a regular basis (because they have a mental health problem, a physical disability, a learning disability, or find it difficult to cope alone for another reason) and who are unpaid. The term is also used to describe paid professionals who are not related to the individual they support.

Some family members do not like the term ‘carer’. You will come across the description, however, in government policies and laws, when you are dealing with mental health professionals, and in research. You may also come across the term 'informal carers' to describe relatives and friends who support someone who is unwell.

Many people who have experienced psychosis are supported by family members or friends. It is likely that they in turn will need some support to help them deal with the range of emotions they may feel – anxiety, worry, frustration, anger, resentment, guilt, shame, for example – and with the day-to-day practicalities of living with someone with psychosis.

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Information and advice

Mental health professionals involved in the care and treatment of your relative should give you information to help you understand your relative's diagnosis and advice on how you can offer support in the best way. They should also include and involve you in discussions about treatment and care, unless your relative asks them not to (see Confidentiality page).

Many family members say, however, that they are not given information about psychosis and their relative's diagnosis. This website, mentalhealthcare.org.uk, was launched specifically to make information about psychosis easily accessible to family members. Information is also available from organisations listed on the Other useful websites page. Another useful source information is the telephone advice and information service run by Rethink Mental Illness, 10am to 1pm on weekdays, 0800 5000 927.

You may need information about benefits, social services support and initiatives (like direct payments and personal budgets), legal advice etc.

Carers Direct is a government website accessed via NHS Choices that contains a lot of practical information of this nature. There is a free and confidential information and advice Carers Direct telephone service – 0808 802 0202 on weekdays, 9am to 8pm, and on weekends, 11am to 4pm.

Another government website, Directgov, also contains information that family members who are supporting a relative may find useful.

If you are in close (daily) contact with and offer support to someone with schizophrenia, you could ask your relative's mental health team to arrange family therapy (also known as family intervention). This is recommended in NICE (the National Institute for Health and Clinical Excellence) guidelines as part of the package of care your relative should receive (see Family therapy page and What you can expect from the NHS page). Information is a key part of family therapy for psychosis.

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Services specifically for carers

A variety of services specifically for carers are run by charities, voluntary organisations, local authorities and mental health trusts. You can find out about services in your area by visiting your local council and local mental health trust websites, or ask for information about local services from one of the mental health professionals who support your relative or from your GP. Or you can search the internet – google 'carers support' and the name of the area where you live.

Carers Trust (formerly the Princess Royal Trust for Carers and Crossroads Care) runs services for carers across the country. The Carers Trust website lists these services, including local Carers' Centres (still branded as Princess Royal Trust Carers' Centres) that offer information and advice, run carers groups and other schemes that offer support.

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Carers' groups

Meeting with and sharing experiences with other people in the same situation can be helpful and your relative’s mental health professionals should be able to tell you about local carers' groups.

The mental health charities Rethink Mental Illness and Mind run carers’ groups specifically for people who support someone with a mental health problem, and you can find out if there is one near to where you live by visiting their websites (Mind and Rethink Mental Illness). There are many other groups for mental health carers run by other charities, voluntary organisations, mental health NHS trusts or independently.

Sometimes they are listed on mental health trust or local authority websites, or you could search on the internet for a carers' group in your neighbourhood.

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Support from your GP

Your GP should also offer you support. Research has shown that people who care for their relatives and friends may have poor health themselves and it is important that any problems are picked up and treated.

The government is keen to raise awareness among GPs to help them support carers, and help them take care of their physical and mental health. This was explained in an updated version of the government's Carers Strategy published in 2010 (see Government support for carers below).

A free 'Supporting Carers in General Practice' e-learning programme has been developed by the Royal College of General Practitioners (RCGP) in partnership with the Department of Health and the Princess Royal Trust for Carers (now part of Carers Trust since a merger with Crossroads Care in April 2012), and with support from the Children's Society. The programme is designed to help GPs and other people working in primary care teams better support people who care for others. 

You can visit the Royal College of General Practitioners website to find out more about the e-learning programme and other work the RCGP is carrying out in partnership with the Carers Trust (formerly Princess Royal Trust for Carers), including the production of Supporting carers in General Practice, a revised and updated guide for GPs. The guide can be downloaded from the RCGP website. 

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Training for carers

Many NHS mental health trusts have developed training programmes for families and friends who are supporting people with mental health problems. These programmes can give you information and skills to help you in your caring role. Ask the mental health professionals involved in your relative’s care if there are any such schemes in your area. Or visit your local mental health trust’s website and search for pages that contain information for carers.

An online training programme for carers called 'Caring with Confidence' is available via Carers Direct, accessed via the NHS Choices web pages.

Rethink Mental Illness also runs a Carers Education and Training Programme. To find out more, ring 0300 5000 927 or email info@rethink.org.

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Carer's assessment

If you look after a relative or friend who cannot manage without your help, you are entitled to have a 'carer's assessment'. This is carried out by your local social services department, or by a voluntary organisation acting on behalf of social services. The assessment focuses on your needs and, as a result, social services may offer you practical help to support you in your caring role.

To arrange a carer's assessment, contact your local council’s social services department. You can find contact details of your local social services department by visiting the DirectGov website and typing in your postcode.

You can also ask your GP to contact social services and arrange an assessment for you.

If social services decide to offer you help, you may be eligible for a 'direct payment'. This means you are given the cash to arrange the help that suits you best, rather than rely on social services to provide the support you need (see Personalisation, personal budgets and direct payments page).

You can find out more about carers' assessments and direct payments on the Carers Direct website.

To find out what to expect during a carer's assessment, visit the Carers UK website.

You can also find out more about carers' assessments on the Carers Trust website.

Once an assessment has been carried out, you should be given a copy of it. You should also be given a copy of the plan that details the services and council-funded support the assessment says you are entitled to have.

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Benefits

There is a guide to benefits that carers may be able to claim on Carers Direct. This includes information about Carer's Allowance, the main benefit for carers.

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Government support for carers

In 2008, the previous government published a 'Carers Strategy'. This was called Carers at the heart of the 21st century, families and communities: a caring system on your side, a life of your own.

The Strategy defined a carer as someone 'who spends a significant proportion of their life providing unpaid support to family or potentially friends. This could be caring for a relative, partner or friend who is ill, frail, disabled, or has a mental health or substance misuse problem.'

Carers Direct, accessed via the NHS Choices website, was created as part of this original Carers Strategy.

In November 2010, the current government updated the Carers Strategy in a document called Recognised, valued and supported: next steps for the Carers Strategy.

This sets out government plans for supporting carers from 2011 to 2015.

There is a new 'Reaching Out to Carers Innovation Fund' that has made money available to voluntary organisations in England that support people who support a relative or friend. You can download a list of projects given assistance by the Reaching Out to Carers Innovation Fund in 2010/2011 on the Department of Health website.

The revised Carers Strategy also talks about the government's intention to make it easier for people to combine caring responsibilities with work. The 'Modern Workplaces' plan from the Department for Business, Innovation and Skills include proposals to extend the right to request flexible working arrangements to all employees.

Another government document published in 2010 was called A vision for adult social care: capable communities and active citizens. It spelled out government ideas for changes to the social care system.

Everyone who uses or runs social care services was invited to comment on government proposals to reform the social care system. A consultation document called Caring for our future: shared ambitions for care and support was published in September 2011 and can be downloaded at the Department of Health website.

The consultation period closed in December 2011 and the government is now using the responses to 'inform policy development and decisions.' Visit the Department of Health Caring for our future web pages to find out what's happening. 

The government also asked this independent Commission on Funding of Care and Support to review the funding system for social care in England and make recommendations for the future. You can read about these recommendations by visiting the Commission's website.

They include proposed changes to the way carers' assessments are carried out and recommendations for giving carers access to better, more reliable information and advice.

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Carer Strategy 'demonstrator sites'

After the Carers Strategy was originally published in 2008, 25 'demonstrator sites' were set up and funded by the Department of Health to test three different ways of offering support to carers – people who support someone who is ill, frail, has a disability or mental health problem. The 'sites' are all local authorities or health organisations that were given funding to offer support to carers until September 2011.

The three different types of support were: breaks from caring; health and wellbeing checks; and better support from NHS staff. The Centre for International Research on Care, Labour and Equalities at the University of Leeds has evaluated the success of the support and the sites.

The final report, New approaches to supporting carers' health and well-being: evidence from the National Carers' Strategy Demonstrator Sites programme, is downloadable on the Centre's web pages.