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NHS Continuing Care Volunteer Support Group

The NHS Continuing Care Volunteer Support Group is currently unable to take new referrals. In the meantime, and in view of the time limits attached to CHC appeals, the following organisations may be able to help:

Alzheimer's Society has set up a support group for people who have been denied access to NHS continuing healthcare (CHC) funding, to help them challenge the decision.

How to get in touch with the group

If you are challenging a CHC decision and would like to be put in touch with the network, please email helpline@alzheimers.org.uk or call the Alzheimer's Society National Dementia Helpline on 0300 222 1122. Please provide the following information:

  • your name
  • your email address
  • your telephone number - please provide a landline number, whether it is a daytime or evening number, and what times are best to contact you
  • the name of the clinical commissioning group where you have been refused NHS CHC
  • whether an appeal or review date is due and the date of this, if it is known
  • if you are working with a solicitor or any fee reclaim agency.

Members of the NHS Continuing Care Volunteer Support group are all volunteers who have successfully obtained NHS Continuing Care funding. They offer practical support and information based on their own experience. They do not offer legal advice. While you do not need to engage a solicitor to do this you may decide to do so. Limited resources mean the group cannot provide any additional support to those approaching a solicitor or other advisers.

Please check that you have a copy of the letter from the clinical commissioning group (CCG) confirming that continuing healthcare has not been awarded, and a copy of the completed Decision Support Tool (DST) used in the decision-making process. The volunteer group is unable to help you with the appeals process unless you have these documents, so it is important to contact the CCG and have them sent to you as soon as possible.

A personal perspective

Reflections by Barbara Pointon on making a complaint to the Health Ombudsman's following a decision to refuse NHS continuing healthcare funding.


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