When someone becomes unwell it is very often their immediate family or friends who provide much of the care that helps them to recover, or who support them through recurrences of mental illness throughout their life. Anyone could become a carer at any time during their life.
The National Carers Strategy stresses the importance of support based on personalisation principles and approaches. The strategy defines a carer as someone who ‘spends a significant proportion of their life providing unpaid support... This could be caring for a relative, partner or friend who is ill, frail, disabled or has mental health or substance misuse problems' (DH, 2008).
Many people do not think of themselves as carers and therefore do not seek support or are unaware of the support they are entitled to, including financial support. Carers themselves are twice as likely to have mental health needs if they provide substantial care (Singleton et al, 202) (Hirst, 2004) An estimated 6,000 to 17,000 children and young people care for an adult with mental health needs (Aldridge and Becker, 2003).Those providing 35 hours or more of care a week and those in receipt of Carer's Allowance are more likely to be in the second lowest and middle income bands than the general population and working carers are more likely to be unqualified and less likely to hold university degrees than other people in employment (DH, 2008).
The evaluation of the Individual Budgets Pilot reported that: ‘individual budgets were significantly associated with positive impacts on carers' quality of life' (SPRu, 2008).
There is information relevant to carers throughout this document, but this section tries to look specifically from a carer's perspective.
I have easy access to information and advice to help and support me as a carer.
Examples of things that help with this:
· Information available very locally e.g. in local shops, pubs and GP surgeries
· Websites designed for carer information and support and access to the internet (and if needed, training and support to use information technology)
· Local networks and peer groups for support and exchange of information
· Well informed staff who can give me the right information and advice, or direct me to other sources
· Health and social care telephone systems that are warm and responsive and can answer my questions or quickly direct me to the right place
(See also Information and advice section)
If I have to go through an assessment or self-assessment process it is easy to access and sensitive to my needs and wishes. If I am eligible, assessment leads to the support I want in a way that suits me.
The contribution I make, and the informal family and friendship networks that support me and the person I care for, are recognised in assessment and support planning.
It is clear what can reasonably be expected from me as a caregiver and I have choices about how and when I provide care. The processes I go through recognise that I can have a life of my own outside of my caring role.
Examples of things that help with this:
· Assessment systems and processes that are based on a set of personalisation principles, not just a document
· Person-centred tools and approaches that put people in control, recognise and respect the significant role of carer and acknowledge the support of family members and friends
• Being treated as an equal partner to develop support plans and find suppor
Being supported to look beyond health and social care to consider things like being part of a community, leisure, education, employment, faith and culture
· Support for community participation (See also Helpful, person-centred systems and Partnerships)
I get help and support when I need it and at times of crisis.
Examples of things that help with this:
· Advance directive and crisis planning according to people's wishes, that people are confident will be carried out
· Acknowledgement of carers needs and wishes and the sensitive balance of support for the rights of all involved
· Creative commissioning that allows for flexibility and choice • Carers control over how money allocated for their support is spent
(See also creative commissioning page and Helpful, person- centred systems)
I am given information about personal budgets. I get the support that I need, and that suits me, if I take on the management of a personal budget.
I am not put under pressure to take on management of a personal budget if I do not feel comfortable with this.
Examples of things that help with this:
· Clear, accessible information in ways and places that suit different people
· Clarity about the choices in managing a personal budget or having it managed on your behalf
· Well informed, positive staff who are sensitive to the right kind and level of support needed to help people take control
· Support for person centred care planning and finding what is wanted, if this is needed
· Support and training as a personal budget holder e.g. as an employer, managing the money, finding the right support
(See also Support for Managing personal budgets)
I can get breaks from caring when I need them and in a way that suits me.
In the consultation for the National Carers Strategy, carers made it clear that the provision of breaks and replacement care were among their highest priorities. Carers who do not have breaks from caring are far more likely to have mental health needs (Hirst, 2004).
Examples of things that help with this:
· Senior management support for innovation to develop ways of providing breaks in ways and at times that suit people
· Programmes that actively promote information about breaks, in ways that will reach people whoever, or wherever they are
· Expert carer commissioners and consultation that impacts on the way short breaks are provided and made available
· Resources that local and health authorities, in partnership, can invest in a range of ways to meet everyone's short break needs, in response to expert advice from carers
· Personal budgets for carers to decide on and arrange their own ways of taking breaks
· Investment in assistive technology such as Telecare (e.g. sensors placed around the home that trigger alarms connected to help at the sign of unusual activity such as front doors opening at night)
I am not forced into financial hardship as a direct result of having a caring role.
Examples of things that help with this:
· Information about benefits that carers are entitled to is easily available and there are programmes, campaigns and strategies to make sure that information reaches people
· Employers put into practice the requirements of the Work and Families Act 2006 for flexible working for employees who care for an adult
· Improving information about flexible job vacancies via Jobcentre Plus
· Specialist training for Jobcentre Plus Advisers and for health and social care staff
· Funding for replacement care that will allow people to take part in training and employment programmes
· Return to work support • Information and support for employers to promote the positive benefits of employing carers
I can continue my learning and personal development.
Examples of things that help with this:
· Replacement care that people are confident in and feel comfortable with, so that they can participate in training and personal development opportunities
· Training and further education opportunities that are designed to be flexible and fit in with caring responsibilities
• Careers guidance and advice services to help carers progress back to learning and work through skills and confidence building
I am able to stay well as a carer
Examples of things that help with this:
· Regular breaks, a decent place to live and financial security
· Annual health checks for carers
· National and local projects providing emotional support for carers
· Training and guidance for General Practitioners to help them better understand the needs of carers
· Making sure carers can easily access information relevant to the needs of the person they are caring for - and training to help them in their caring role, if appropriate.
· Peer support in the form of local groups and networks and the opportunity to meet new people
· Prevention and early intervention initiatives (perhaps through Local Area Agreements) to reach carers who may not be aware of what is available to support them in their caring role
· Providing replacement care and finance for ‘caring for carers' programmes - local and health authorities in partnership with the voluntary sector and local shops and services (e.g. relaxation, therapy and exercise services, drop in centres, meals out, carers cards that give concessionary rates in shops, leisure services and for transport etc)
As a child, I am protected from inappropriate caring and have the support I need to learn, thrive and have a positive childhood.
Examples of things that help with this:
· Dedicated young Carers projects that provide, for example, evening clubs, weekends away, days out, holidays, someone to talk to, information and advice
· High quality targeted support for young carers
· Support to have the time and space to learn and have friends
· Training and awareness raising initiatives for general practitioners and teachers
· Whole family approaches to support
I am respected by professionals as an expert partner.
Examples of things that help with this:
· Support for involvement in consultation, including replacement care
· Flexible and innovative ways of including carers in consultation and planning
· Experts by experience paid as advisers and commissioners - in local and wider strategic planning and decision making, inspection and service design
· Carers are able to explore and discuss their concerns in an atmosphere of trust and:
- given general factual information
- helped to understand issues of confidentiality and any restrictions requested by the person they are caring for and how to access help
- offered a chance to see a professional on their own - given confidence to voice their views - encouraged to feel a valued member of the care team - offered an assessment of their own needs
(See also underCreative Commissioning)
SIGNPOSTS
information and websites
1. A list of local carer support groups, and links to their websites can be found on: http://www.mentalhealthcare.org.uk/other_useful_websites#Advice_support_and_information_for_carers
2. There are many good local websites for mental health carers. An example is the website for mental health carers in the Bolton area. www.mentalhealthcarers.org
3. Princess Royal Trust website for young carers: www.youngcarers.net/ who_can_help_me/86/92
4. MIND Carers Factsheet gives information about the help and services that are available for carers of people with mental health needs. For more information on the emotional aspects of the caring role, see Mind's booklet How to cope as a carer. www.mind.org.uk/ Information/factsheets/carers/
5. Carers Direct A website giving information, support and advice for carers. Also gives information about local mental health services. www.nhs.uk/carersdirect/Pages/carersdirectHome.aspx
6. Carers uk is a membership organisation of carers that campaigns on behalf of carers and provides information, support and advice. www.carersuk.org/Aboutus/Howwehelp
7. Facts and statistics about carers. www.carersuk.org/
8. Information about financial support for carers can be found on: www.carersuk.org/Information/financialhelp
9. Information about breaks for carers can be found on: www.carersuk.org/Information/Helpwithcaring/Takingabreak
10. Carers and confidentiality in mental health: issues involved in information-sharing A leaflet produced by the Royal College of Psychiatrists and The Princess Royal Trust for Carers www.rcpsych.ac.uk/Pdf/carersandconfidentiality.pdf
Policy and guidance
11. SCIE Guide 9: Implementing the Carers (Equal opportunities) Act 2004, SCIE, 2007. Gives quick and easy access to information that aids the implementation of the act, including research, practice examples and further information. www.scie.org.uk/publications/guides/guide09/ files/guide09.pdf
12. Carers at the heart of 21st century families and communities: a caring system on your side, a life of your own Department of Health, 2007. www.dh.gov.uk/en/Publicationsandstatistics/Publications/ PublicationsPolicyAndguidance/dH_085345
13. Department of Health website: Carers This section of the DOH website is aimed at health and social care professionals in the statutory and independent sectors who work with carers. It contains information on Government guidance and regulations affecting carers, details of the current carers grant and other relevant information on carers' policy. www.dh.gov.uk/en/Socialcare/carers/index.htm
14. Frequently asked questions about the Work and Families Act 2006 can be found on: www.carersuk.org/Newsandcampaigns/ makeWORkwork/WorkandfamiliesActfAq
Projects
15. Partners in Care Partnership between The Royal College of Psychiatrists and The Princess Royal Trust for Carers to highlight the problems faced by carers of people with different mental health needs and learning disabilities, and encourage partnerships between carers, patients and professionals. www.carers.org/articles/partners-in-care,264,cA.html
16. My care A project for young carers of parents with mental health needs. Mental Health Foundation and The Princess Trust for Carers. www.mentalhealth.org.uk/our-work/children-and-young-people/www.mentalhealth.org.uk/our-work/children-and-young-people/ mycare/?locale=en
17. Employers for Carers is relaunching as a membership forum for employers, offering a range of support from information on good practice to training and consultancy. www.employersforcarers.org/Home
training courses for carers
18. Caring with confidence A programme that provides training for carers, empowering and enabling them. It informs people of their rights, the services available to them and develops their advocacy skills and their ability to network with other carers to support their needs. www.dh.gov. uk/en/Socialcare/carers/dH_075475
