Are You a Carer

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KITH AND KIN (Sixties Press 2004)

WHO IS A CARER? ARE YOU A CARER? CARING ABOUT CARERS

CONTENTS	ARE YOU A CARER? If you are providing help or support to a relative, partner or friend who experiences mental distress, whether you give practical help or provide emotional support, then you are a carer. You may be a carer who lives with the person or you may be a friend or neighbour. You may not think of yourself as a carer. Your essential role and expertise should be recognised and respected. • You should be listened to without bias or prejudice and be taken seriously. •You should be recognised as someone who is providing support to the person for whom you care.

•You should be treated as someone who has relevant and important knowledge about the person for whom you care. •All staff should be aware of the distress and anxiety that caring can cause and help you cope with this. •You should be asked to give your opinion - this should be respected and valued and where necessary kept confidential. •Your views should be taken into account in the decisions about the person for whom you care. •You should be told how the information you provide will be used. •You should be able to choose whether you wish to take on, or continue with, the role of a carer. You should be given the information that you need to help you provide care. • Your views about the needs of the person for whom you care should be sought and taken into account. • You should be involved in the decisions made about you and (with his or her consent) the person for whom you care, including the preparation of the care plan. • Even if the person you care for is unwilling for you to be involved in planning and agreeing his or her care, you should be told who to contact in an emergency or in a crisis. •You should be told of the right to a carer's assessment under the Carers and Disabled Children Act 2000. •You should be given a copy of the care plan of the person for whom you care (with his or her consent). This should state the responsibilities of all the people who are involved in providing care. • If you feel that the care plan is not working or is being improperly implemented, you should be given the opportunity to state your views and to be listened to and be involved in the discussions on the action to be taken to address the problems you have identified. • When the person you care for is receiving care and treatment in hospital, you should be involved in planning and agreeing the discharge plan, including the date of discharge. •So far as possible, meetings should be held at a time that suits you and the person for whom you care. Your needs as a carer should be recognized, responded to and reflected in the care plan. • All staff should recognise that you may have additional commitments to that of your caring role, such as looking after your children or going to work. • Your ethnicity and culture, religion, gender, sexual preference, age and other characteristics should be respected and taken into account, but without general assumptions being made about you. • If you require assistance in communicating your views, you should be given the appropriate assistance, for example if English is not your first language, you should be assisted by a qualified interpreter. • If you are told that you are not entitled to a carer’s assessment, you should be told why. If you have a carer’s assessment, this should: - if you so wish, be carried out separately from the assessment of the needs of the person for whom you provide care. - allow you to have someone to support you while the assessment is taking place. - give you the opportunity to assess your own needs. - assess your needs without the assumption being made that you are willing or able to take on a caring role or to continue to provide the same level of care. - consider how your caring role affects your relationship with other family members and friends and your ability to hold down a job. - address your own health and well-being, your need for emotional and other support and how you would like to be helped in providing care - consider whether you would like to take a break from caring and if so, look at what type of support you think would enable you to do this. • When you have a carer’s assessment you should be given a copy of your assessment and care plan. • You should have your needs regularly reviewed, as circumstances require, but at least annually and, if you so wish, this should be carried out from the review of the needs of the person for whom you care. You should be provided with appropriate help and support when you need it. •You should be told of your right to a carer’s assessment. • You should be told who to contact if you need help and to know that your request will be responded to within a reasonable time. •Your contribution should be valued and incorporated into the planning, development and evaluation of services. • Where plans such as hospital admission are being considered, you and the person you care for should be given the opportunity to consider alternative care. •You should be given information about what to do and whom to contact in times of crisis. • You should be told about opportunities to take a break from caring. •You should be given details of local support groups and advocacy services. • You should be helped to get advice about housing and employment issues, financial matters, including entitlement to benefits, and training for carers. •You should be given a copy of your own care plan in a form which you find useful. • The services that you receive should be of good quality, appropriate to your needs and provided within an agreed time. •You should be advised on what action to take if you are not happy with the assessment or the decisions made as a result of the assessment or if you think that the care plan is not being implemented properly. You should be actively involved in the planning, development and evaluation of services. •You should be given the opportunity to state your views on the quality of the services provided and on the range of services which need to be developed. • You should be told how your views will be taken into account as part of an on-going evaluation process. • Your contribution should be valued and incorporated into the planning, development and evaluation of services. • Where you are invited to meetings, you should be offered help in arranging alternative care for the person you care for and receive payment for travel and alternative care costs. • You should be given adequate notice of meetings, consultation periods and other relevant events. •You should be told how the particular consultation process will work. • You should be told how the information you provide will be used. • You should receive feedback on the outcome of the consultation within six months of completing the consultation. Take a break Everyone needs a break from their usual routine. Whether we enjoy an evening at the cinema, a meal out in the evening, a two week package in the sun or a weekend walking the hills, we have enormous possibilities for satisfying our needs for a break. But there are a great many people who can neither take advantage of the possibilities offered in the high street travel agents or, at whim, decide to visit the theatre or a cinema. Their circumstances make it equally impossible for them to book a break away from home or to escape into the fantasy world of a play or a film. They are the families who receive community care services: children with learning disabilities and their parents; those who look after older people suffering from dementia or loss of memory; wives and husbands who care for a partner with multiple sclerosis; and those who care at home for parents or children suffering from mental illness. Only a very specialised and sensitive service can offer them the support they need to get a break, a change of scene or some relief from the demands of everyday life. A number of social services departments and voluntary organizations can suggest ways in which provision might be improved within the resources available. Sharing information with you In order to help and support your partner, relative or friend who has mental health problems you are likely to need information on his or her health needs and the treatment that he or she is being given. Such information would include: • The diagnosis of type of mental health problem the person you care for has • The type of treatment the person is receiving and any possible side effects • How to recognize when the person you care for is becoming unwell and who to contact if this happens. Most professionals will be happy to give you "formation about the type of mental health problems the person you care for has, and general guidance on its management. However, like any health professional, mental health professionals are under a duty to keep personal information confidential. Mental health professionals are not allowed to disclose personal information about the people they care for and treat to people who are not members of the care ream unless the person agrees. So you will not be given personal information about the person you care for unless he or she has stated that you can have it. Equally, your discussions with mental health professionals should be treated as confidential and not disclosed to the person you care for without your agreement. There may be circumstances where personal information can be passed on to others without the person’s consent. These exceptions to the duty of confidentiality fall broadly into two categories: • Where the disclosure is required by law (legislation or an order made by a court) or • Where the disclosure is considered to be in the public interest - for instance to protect the person you care for or a member of the public (which includes you) from harm. The police and people with mental health problems The police are often involved with people experiencing mental health problems and this can be very disconcerting for the carer. For example, the police could be called to the carer’s home if the person experiencing mental health problems lives with the carer or they may need to deal with an incident involving the person with mental health problems, which has occurred in a public place. If the police believe that the person has mental health problems or the person is already on a section under the Mental Health Act he or she may be taken to the local psychiatric hospital. Violent behaviour People’s fears about mental distress often lead them to believe that those who are mentally ill are likely to be violent. This is very seldom the case, but violence can occur. Nobody should have to live with violence or the threat of it. If you think that there is the possibility of violence, it’s worth working out what you would do in advance. If the person you care for is acting in a threatening or aggressive manner, it is important to stay as calm as possible, remove yourself and others from the area and seek help, for example by telephoning a member of the person's care team or, if necessary, the police. Mental Illness - A Handbook for Carers (2000) includes the following suggestions on how to prevent violence: • Think about whether, looking back on a violent situation, there was anything that might have triggered this behaviour, such as a sequence of events or symptoms. This may help you to identify warning signs or indicators of a relapse of the person’s mental health problems. • Try to identify warning signs of impending violence (which might include sweating, agitation, hallucinations, delusions, drug and alcohol abuse) and take them seriously. • Be aware of, and try to moderate, any negative attitudes that you may feel • Encourage the person you care for to take his or her prescribed medication, maintain moderate caffeine and alcohol intake, abstain from illicit drugs, take regular exercise and maintain a regular routine. • Seek assistance from mental health professionals to help you cope with the practicalities and emotional demands of caring for someone with mental health problems who has demonstrated threatening or violent behaviour. Questions to ask the psychiatrist About the diagnosis •What illness does my relative have? If a diagnosis has been made • What symptoms and signs suggest this? • What is known about the causes of this illness? • What is likely to happen in the future? Will it get better or worse? • Where can I get written information about this disorder? • If a diagnosis has not yet been made, what are the possibilities? About the assessment • Are there any other tests that might be needed? • What tests have already been done? • Are there any physical problems that have been discovered? About care and treatment • What are the aims of the care and treatment? • What part will the keyworker play in my relative’s care? • Who else will be involved in the treatment? • How often will you see our relative? • What is your plan for treatment? • For how long will our relative need treatment? • Would psychotherapy (talking treatments) of any sort be helpful? If so, is it available locally? • What happens if our relative refuses treatment? The family and treatment • Will the family be involved in discussions concerning the treatment of our relative’s illness? • What can we do to help? • Are there any local self-help or carers’ groups? Getting help • How will we get in touch with you? • How do we arrange to see you? • Who do we contact if we are worried about something? • Who do we contact in an emergency? • How can we get a second opinion? Medication • What medication is to be used? What should the benefits of this medication be? • Short term • Long term What are the possible side-effects of this medication? • Short term • Long term • Why have you chosen this particular drug? • Will he/she have to take it for the rest of his/her life? • Are there any drugs that could be used if this one does not work? • What signs or symptoms might mean that the dose should be changed? • What will happen if he/she stops taking the medication? • Do you have any written information about this medication? Hospital treatment • If my relative has to go into hospital, which one would it be? • What arrangements will be made for the care of my relative after leaving hospital?

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