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Your rights as a carer

"I know that the doctors' main role is to look after the patient but I also need to know what is happening?"


  • §Caring for someone with Parkinson’s disease (PD) is both physically and emotionally demanding. You should ensure that your own health and need for information are not neglected and that you have a clear idea of the help that is available to you.

  • §A nurse or social care professional may delegate tasks to you or ask you to assist them You must understand the nature and extent of the care you are expected to provide - and be happy to do this.

    • §As a carer you have certain legal rights :
    • §§To choose not to care.
    • §§To have your own needs assessed by local social services, separately from an assessment of the needs of the person you care for. The results of both assessments must be considered in decisions about any services provided.
    • §§To be consulted at time of hospital discharge and to receive appropriate assessment and support.
  • §A carers assessment should cover your own views of the situation, the tasks you undertake (and would like to help with), your relationship with the person cared for, your other responsibilities (work, education, other family commitments) and your understanding, ability and willingness to continue to provide care. It is important that your psychological as well as physical needs should be recognised.

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  • §You should be given a written copy of any care plan made by social services. You should also make sure that you maintain contact with the person responsible for organising support (the case manager) and inform them of any change in circumstances or additional needs.

  • §Without the consent of the person you care for, you do not have a right to know all their medical details. However, unless they object, it is sensible to accompany them to important visits to the doctor and to have a full knowledge of their medication and any special care needs. If the person you are caring for is housebound then you should be able to arrange for your family doctor and other professionals (e.g. dentists, chiropodists, opticians) to come to the house.

  • §All carers need regular breaks to give them time to keep on top of problems and to ‘recharge their batteries’. A respite break need not be for long or be expensive, but does need to be carefully planned if it is to give maximum benefit to both carer and cared for. At times it may seem easier to carry on with the same familiar daily routine, but in the long-term this is damaging to your health. Having a break is a carer’s right.
  • §You can claim a Carer’s Allowance if you spend at least 35 hours a week caring for someone who gets Attendance Allowance and do not earn more than £77 a week. Many pensioners cannot actually be paid Carer’s Allowance as it will overlap with the Retirement pension.

Your doctor, specialist nursing staff, or social worker can explain more about your rights as a carer.

The Parkinson’s Disease Society (tel 020 7931 8080; http://www.parkinsons.org.uk), 

Carers UK (tel 0808 8087777; http://www.carersonline.org.uk) or 

Age Concern tel 0800 009966; http://www.ageconcern.org.uk are also useful sources of further information.

Useful books include:

‘Choices for the Carer of an Elderly Relative, by Marina Lewycka, published in 2003 by Age Concern, London. ISBN 0 862423759.

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This site has been established for the dissemination of information. While every effort is made to ensure that information on this site is accurate and current we accept no liability for any omissions or inaccuracies that may have crept in. If in any doubt please contact your doctor for further advice.

Last Modified 13 August 2004
Maintained by Matthew Harris