"More funding needed for palliative care patients"

About: Leeds PCT Sue Ryder Care Centre (wheatfields)

(as a carer),

I have been since March 2007 helping a close friend of mine who was diagnosed with a terminal illness. The treatment by GP and hospitals involved in Leeds has been first class, as has the support which has been received more recently by Macmillan nurses at a local hospice. However two concerns - 1- the support on a one to one basis around initial diagnosis and walking the patient (who is unwell and traumatised) through the next steps and particularly assistance, financial and other. This could only be done over the telephone, something my friend was not able to do. I did it on his behalf but it would have been much easier and less timely and wearing to have been able to do this in one meeting, face to face.

Now 13 months later, we are at the stage where Macmillan nurses are needed. The service to which we were referred had telephone answerphone saying nursing support would not be available until 24 to 48 hours. There has also been a distinct lack of co-ordination between GP, hospital, district nursing and hospice nurse. I suspect this may be a funding issue but also process related. Communication and support during this time is crucial for the patient and for those trying to support them.

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Responses

Response from Leeds PCT

Firstly, please accept our apologies for the length of time taken to respond to your posting.

Thank you for raising your concerns about support for palliative care patients, we are sorry to hear about the problems you have been experiencing.

Your GP should be able to signpost you (as a carer) or your friend to any services you need. If McMillan nurses can't respond quickly then District Nurses should be able to. The District Nurse will then assess and refer on as necessary.

If you need any further help or advice, please contact the PALS team on 0800 0525 270 who will be able to put you in touch with the Palliative Care Lead.

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