Tips on preparing your case for NHS continuing healthcare

The Group recommends that people with a diagnosis of dementia and their carers start thinking about continuing care funding as early as possible.

Even if a person is not yet eligible for continuing care it is worth using this checklist to prepare for assessments in the future. This checklist will also be useful to people who want to challenge decisions on NHS continuing healthcare

1. Create a medical history for the person you care for. Ideally this should be on one page, and should be regularly updated. This information may be useful, for example, when preparing for an appeal panel against a decision to refuse NHS continuing healthcare.
2. Good record keeping is essential. Record the date, time, contact person and brief summary of all conversations with staff from your clinical commissioning group, hospital, GP, care home, social services etc about the needs of the person you care for. This is important because sometimes the records kept by the various bodies involved in a person's care can sometimes be inaccurate or inadequate. Also a high level of staff turnover may contribute to lack of continuity in record keeping.
3. Request medical records from various bodies involved in the care of the person, for example the hospital or the GP.
4. When applying for or challenging a decision on NHS continuing healthcare it is often best to put your case in writing and keep all correspondence.
5. File all the information you gather. For example, you might want to get a folder and file information under different headings, such as care home notes, nursing home notes, NHS continuing healthcare assessments, care plans, letters and your comments.
6. Use the Department of Health National Framework for continuing care to do your own assessment of the person's needs.
7. Try to attend all assessments or appeal/ review hearings, for example by the clinical commissioning group or independent review panel.
8. Get people to support your case, such as your GP or MP.
9. Be aware that the Parliamentary and Health Service Ombudsman is the final arbiter if you have exhausted the local complaints system. It is important to keep good records in order to make an effective case to the Ombudsman. The Ombudsman will decide whether to investigate the claim.
10. If you think you have a strong case for continuing care, be persistent. It can be difficult and frustrating but many people with dementia have successfully secured NHS continuing healthcare funding.