BARRY TEBB'S MENTAL HEALTH WEBSITE
EXPERIENCES IN MENTAL HEALTH CARING
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BARRY TEBB'S MENTAL HEALTH WEBSITE EXPERIENCES IN MENTAL HEALTH CARING |
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HOME LITERATURE AND PSYCHOANALYSIS ABOUT BARRY TEBB LINKS
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KITH AND KIN (Sixties Press 2004) |
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CARING ABOUT CARERS STANDARD 6 OF THE NATIONAL SERVICE FRAMEWORK FOR MENTAL HEALTH Aim To ensure health and social services assess the needs of carers who provide regular and substantial care for those with severe mental illness, and provide care to meet their needs. Standard six All individuals who provide regular and substantial care for a person on CPA should: • have an assessment of their caring, physical and mental health needs, repeated on at least an annual basis • have their own written care plan which is given to them and implemented in discussion with them. |
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Rationale
Carers play a vital role in helping to look after service users of mental health services, particularly those with severe mental illness. Providing help, advice and services to carers can be one of the best ways of helping people with mental health problems. While caring can be rewarding, the strains and responsibilities of caring can also have an impact on carers’ own mental and physical health, and these needs must also be addressed by health and social services.
The Government has shown the importance it attaches to ensuring that all carers get the services and support they need in its national strategy for carers, Caring about Carers, published earlier this year. The new approach is built around three critical elements - information, support and care - representing a new substantial policy package for carers. Extra funding of £140 million has been provided between 1999/ 00 and 2001/ 02 to help local authorities provide a wider range of services to allow carers to take a break from their caring responsibilities.
Interventions and evidence-base
About half of those with severe mental illness live with family or friends, and many others receive considerable support from them. Carers of service users, including young carers, should be involved in their own assessment and care planning process, which takes account of the state of their own mental and physical health needs, and ability to continue to care.
Women are more likely to be carers than men - 58% of carers in Britain are women and are also more likely to carry the main responsibility for caring, where there is more than one person with some responsibility.
The families of individuals with severe mental illness may have to contend with demanding behaviour, extra financial burdens, restrictions upon their social and family life, and occasionally a risk to their own safety. The needs of those caring for people with severe mental illness or dementia are especially high.
Assessing carers’ needs
The Carers (Recognition and Services) Act 1995 gives people who provide “substantial care on a regular basis” the right to request an assessment from social services. But the implementation of this Act is patchy. Assessments are not always carried out. Some carers are offered very sensitive, practical and emotional support. But others receive little, or no help.
Variations in assessment of carers’ needs occur between individual social workers and care managers, between teams, between areas within authorities, and between authorities. When assessments are undertaken, carers report satisfaction both with the process and with the results. Carers should be entitled to expect at least an annual discussion of the care they provide; the help they receive; what they feel they need; and what is available.
There is evidence that carers of people with severe mental illness are not getting the services they need to support them, or to ensure that their own health is maintained. Young carers are a particularly vulnerable group. Few authorities had implemented the Carers (Recognition and Services) Act 1995 within their mental health services when inspected recently by the Social Services Inspectorate.
In another Social Services Inspectorate report the carers of people with mental health problems were especially critical of how little they were consulted about care plans for service users, how their own needs were not assessed, and how little support they received.
Findings in Safer Services from a range of local inquiries and research show that extreme crimes of violence, manslaughter and murder are much more likely to be committed against family members or carers than against a stranger. Carers need to know what to do in a crisis, and to be assured that prompt action will be taken.
Participants report that they find family and relative support useful and it can reduce relapse rates.
Service models and examples of good practice
Needs assessment and carer’s plan Checklist for GPs and primary care teams to help carers National Schizophrenia Fellowship Education and Support Programme (CESP) Support for families and carers Prioritising carers
To achieve Standard six local services need to pay greater attention to the needs of carers, and to the specific needs of those who care from someone with a mental health problem. This should include the assessment of each carer’s needs when requested, the agreement of a care plan which is reviewed at least annually, and the development of local networks to support carers. Carers should be made of aware of their right to request an assessment.
Needs assessment and carer’s plan
Local health and social care communities should ensure that each carer receives an initial assessment of their caring, physical and mental health needs. Some people with mental illness will have care needs that vary over time. This does not mean that the needs do not present a regular and substantial burden for their carer, and should not be a reason for exclusion from the assessment and care planning process.
Service providers must ensure that carers are provided with information on the help available to meet their particular needs.
Checklist for GPs and primary care teams to help carers
• Have you identified those of your patients who are carers, and patients who have a carer?
• Do you check carers’ physical and emotional health whenever a suitable opportunity arises, and at least once a year?
• Do you routinely tell carers that they can ask social services for an assessment of their own needs?
• Do you always ask patients who have carers whether they are happy for health information about them to be told to their carer?
• Do you know whether there is a carers’ support group or carers’ centre in your area, and do you tell carers about them?
Social services should record each carer’s needs, draw up a care plan and agree it with the carer. The views, circumstances and needs of service users and carers may be distinct, and can sometimes conflict. Local arrangements should be made to ensure that the user’s and carer’s plans are considered together. The carer’s health needs should also be taken into account.
The CPA care co-ordinator should inform users and carers of the carer’s right to request an assessment and ensure co-ordination of users’ and carers’ assessment plans. Local authority care managers have an equal part to play in co-ordination, making links, for example, with primary care services to ensure the carer’s emotional, mental and physical needs are kept in mind as part of the carer’s assessment.
The carer’s plan should include:
• information about the mental health needs of the person for whom they are caring,including information about medication and any side-effects which can be predicted, and services available to support them
• action to meet defined contingencies
• information on what to do and who to contact in a crisis
• what will be provided to meet their own mental and physical health needs, and how it will be provided
• action needed to secure advice on income, housing, educational and employment matters
• arrangements for short term breaks
• arrangements for social support, including access to carers’ support groups
• information about appeals or complaints procedures.
The plan should be reviewed at least annually. More frequent reviews may be necessary if either the service user’s or carer’s health or circumstances change significantly.
The carer’s plan should be confirmed in writing, or in another format that is accessible to the carer. And the assessment should be communicated to the GP and primary care team. Primary care staff, especially GPs and community nurses, are in a key position to detect signs of stress, difficulty or deteriorating health in carers. They should know who to contact to ensure that the carer’s assessment is carried out, and regularly reviewed, and ensure that this happens.
Where the person with mental illness is a parent, health and local authorities should not assume that the child or children can undertake the necessary caring responsibilities. The parent should be supported in their parenting role and services provided so that the young carer is able to benefit from the same life chances as all other children, and have the opportunity for a full education, and leisure and social activities. The young carer’s plan should take account of the adverse impact which mental health problems in a parent can have on the child.
National Schizophrenia Fellowship Education and Support Programme (CESP)
The National Schizophrenia Fellowship and Sainsbury Centre for Mental Health Development have developed, evaluated and will shortly be licensing an education and support programme. The eleven week programme is co-led by trained carers and professionals, is evidence-based, and incorporates psychosocial intervention.
Its objectives are to provide carers of people with serious mental health problems with the knowledge, skills and confidence to deal more effectively with their role. Outcomes will be to improve the health of the carers themselves, and that of the family member for whom they are caring.
Support for families and carers
A project in Avon and West Wiltshire focuses on how family interventions for people with schizophrenia can be extremely effective in preventing relapses.
Inter-agency working, sharing ideas and ensuring services complement each other and communicate well to avoid duplication, is a key part of the success of this scheme.
With an emphasis on early intervention and assessment of each case to provide an individually tailored programme, the results show that the drop-out and nonengagement rate is far below those found in other services.
Local health and social care communities, when planning and providing services, should ensure that carers from black and minority ethnic communities have access to the information which they need; are able to use culturally appropriate services; and can contribute to service planning and development.
Prioritising carers
As part of their Positive Mental Health Strategy, Sandwell mental health services are promoting positive mental health for carers of people with mental health problems. To help target resources, the following priority groups have been identified: children; young people; black and minority ethnic people; women; people who find services difficult to engage with; young men aged 16-35 years; homeless people; single parents and unemployed people.
Local health and social care communities should provide support for carers’ groups and carers’ centres, and work with them to develop local networks of support for carers. This support is particularly valuable for carers of people with mental illness, as there is a sense that only carers in a similar position can understand the difficulties. Carers’ groups should be involved in the planning and development and support for carers.
Where service users are resident in secure mental health services, carers may need support, especially if they have been victims of the family member, or if the family member is located at a distance from the home. Contact with the carer will continue to be of great value to service users. Secure mental health services need to have skilled staff who can facilitate continuing links.
Performance assessment
Performance will be assessed at a national level by:
• a long term improvement in the psychological health of the population as measured by the National Psychiatric Morbidity Survey
• a reduction in suicide rates
• implementation of each local authority’s Caring about Carers action plan
• a reduction in the psychiatric emergency readmission rate
• experience of service users and carers, including those from black and minority ethnic communities.
In addition, progress will be monitored through local milestones, for example:
Milestones
• Carers of people with severe mental illness who provide substantial care on a regular basis should: - be identified by health and social services
- have an assessment of their caring, physical and mental health needs
- have a care plan agreed and implemented to meet their own needs
Data: CPA review returns, data will be integrated into Mental Health Minimum Data Set
• Carers of people with severe mental illness who provide substantial care on a regular basis:
- have seen and had explained to them the care plan of the person for whom they provide care
- understand the nature of their illness
- know how to contact services if they need to
Data: CPA review returns, data will be integrated into Mental Health Minimum Data Set
• Carers express increasing satisfaction with services:
- for those they care for
- for themselves
Data: CPA review returns, data will be integrated into Mental Health Minimum Data Set Local survey
• Carers involved in service review and development
Data: NHS Executive regional offices and social care regions monitoring of health improvement programmes
Recommended local roles and responsibilities
Lead organisation: local authority
Lead officer: director of social services Key partners: health authority, primary care group, including GPs, NHS trust, independent sector providers, and service users and carers.
ORGANISATIONS AND OTHER USEFUL CONTACTS FOR CARERS
Alzheimer’s Society 10 Greycoat Place, London SW1P 1PH Website: www. alzheimers.org.uk
Carers UK 25 Glasshouse Yard, London, EClA 4JS Website: www.carersnorth.demon.co.uk
Crossroads – Caring for Carers Cross Roads Association 10 Regent Street, Rugby, Warwickshire CV21 2PN Website: www.crossroads.org.uk
Depression Alliance 35 Westminster Bridge Road, London SE1 7JB Website: www.depressionalliance.org
Diverse Minds 15-19 Broadway, Stratford, London N15 4BQ
Manic Depression Fellowship Castle Works, 21 St Georges Road, London SE1 6ES
Mental Health Carers Support Association 332-334 High Road, Tottenham, London N15 5BN
Mental Health Foundation 20-21 Cornwall Terrace, London NWi 4QL Website: www.mentalhealth.org.uk
Mind PO Box 277, Manchester M60 3XN Website: www. mind.org.uk
National Schizophrenia Fellowship 30 Tabernacle Street, London EC2 4DD Website: www.nsf.org.uk
Network for People Supporting Carers in Mental Health c/o MACA 25 Bedford Square, London WC1B 3HW
Princess Royal Trust for Carers 142 Minories, London EC3 1LB Website: www.carers.org
SANE 1st Floor, Cityside House, 40 Alder Street, London El 1EE Website: www.sane.org
Young Minds 102-108 Clerkenwell Road, London EC1M 5SA Website: www.youngminds.org.uk
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One Carer’s Story - Barry Tebb Schizophrenia - A Carer’s Journal - Mike Schizophrenia – A Mother’s Story – Georgina Wakefield My Journey Of Sadness – Stan Hagon The Voice Of Carers – Amanda Cummin Yemeni Carers’ Stories – Debjani Chaterjee Beyond Our Reach, But Not Our Love – Brian D’arcy Carry On Caring – Emily Machin & Lucy Machin Enigma And Other Poems - Georgina Wakefield Killingbeck Drive – Brenda Williams Searching The Beyond And Other Poems – Daisy Abey Sharp Edge – Daisy Abey The Long Good Bye – Barry Tebb Looking Back – Barry Tebb Nameless In Camden – Brenda Williams Autobiography – Simon Jenner The Sick Image Of My Father Fades – John Horder Are You A Carer? Caring About Carers
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