Mental health carers: an national overview

Drew Lindon

Policy and Development Officer

(January 2009)

The Princess Royal Trust for Carers

Who are we?

• Set up in 1991• Work in partnership with a network of

144 carers centres (22 in London) • Principal source of direct support and

services to carers (350,000 in 07/08)• Use our expertise to influence policy

and public opinion

Our work with mental health carers

All Carers Centres offer support to carers looking after someone with a mental health condition

41 of our 144 Centres have specialist mental health carers support staff, who link to local social care and health services

Joint work with other organisations nationally - e.g. Royal College of Psychiatrists, National Treatment Agency, Mental Health Foundation

Mental health carers: the stats

There are over 50,000 children and young

people looking after someone with a mental

health problem in the UK2

There are up to 1.5 million people in the UK

caring for a relative or friend with a mental

health problem1

This means:

• 1 in 4 carers are mental health carers

• 1 in every 40 people is a mental health carer3

Mental health carers: what do they do?• Advocacy – help with

correspondence and bills, liaising with professionals...

• Aid with administering medicines• Emotional support • Domestic tasks – shopping,

cleaning, cooking… • Financial support

Many of these tasksdo not stop when theperson cared for is inhospital

Specific challenges for mental health carers

Specific challenges for young carers (invisibility of role, impact on personaland emotional development)

Stigma of mental illness

Unpredictability of conditions – incl. ‘worry when well’

Confidentiality and information sharing issues

Gaps in specialist support for carer and “cared for” (e.g. respite, day support services, transport, volunteering and employment opportunities)

How does this affect these carers?• Relationships with person

cared for, friends and family can suffer

• Financial impacts – serious implications particularly if the spending of the person cared for is out of control

• Carer’s physical health can deteriorate

• Carer’s mental and emotional health suffers

The external reality – the world is changing

The national agenda is moving towards:

personalised care shorter stays in hospital more emphasis on self-care.

Carers becoming more visible and important.

• Additional funding for flexible carers breaks - £150m over 2 years to PCTs, plus £4m for pilot schemes• Ensure that short-term respite is available for carers in crisis situations in each council area. • Reform of Carers Benefits - currently poorly targeted towards most impoverished carers.• Funding for the creation of an Expert Carers Programme – “Caring with Confidence”

Key actions for carers: Carers Strategy and New Deal for Carers

Mental Health Act 2007Came into force on 3rd November 2008Some welcome changes - advocacy for patients, right of nearest relative to request advocacy visits, safeguards against children under 16 years old being treated on adult wards 

Concerns on application of Community Treatment Orders; Mental health carers may find themselves ‘stuck in the middle’ between underresourced professionals and loved onesBUT greater recognition of adult and young carers’ needs for information and support now in Code of Practice; emphasis on listening to carers’ concerns about CTOs.

What needs to change for mental health carers? 1. All local areas must commission

carers services which offer information, emotional support and respite.

2. Mental health carers are routinely identified on the Care Plan, offered a Carers Assessment (includes health, recreation and work)

3. Professionals minimally provide carers with sufficient information in order to care safely and effectively

4. New Deal for Carers emergency respite care services provide flexible and mental health-sensitive respite

What could make a difference immediately?We need services and professionals to see carers as partners in care, and recognise:

1. the extent to which carers contribute This means being responsible for providing mental health carers with the necessary information and support so they can care effectively

2. that carers are experts in their area of experienceFor better care outcomes, involve carers in training and selection of mental health staff, and commissioning of mental health services

Find out more…

• www.carers.org

• www.carers.org/professionals

• www.youngcarers.net

• www.partnersincare.co.uk