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Open letter from a carer

BMJ 1996; 313 doi: (Published 10 August 1996) Cite this as: BMJ 1996;313:370
  1. Anne Mary Jayes
  1. Yours sincerely, Anne Mary Jayes ANNE MARY JAYES lives in London

    Dear Priority Care Commissioner,

    Thank you for giving me the opportunity to comment on your draft proposals for continuing care health provision. On behalf of carers I am concerned that the eligibility criteria for palliative care have not yet been finalised. And the word “dying” is ominously present.

    What about the long term living and those who live with them?

    Carers seem to get only a politically correct mention in your document. Carers are the people who are trying long term, usually alone, to darn torn lives into something bearable—at the blunt end of chronic illness or disability. And it is a blunt situation. After all, no one talks of carers for people with disabilities or illnesses from which they are likely to recover. Carers are people who are dealing with the obverse, mucky, side of the embroidery of life's rich pattern.

    Can you imagine how lonely this is? Nurses in hospitals, or even residential homes, have regular support when they are on duty, which is not for the bulk of their waking hours. …

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