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 NHS continuing healthcare funding as early as possible.

This checklist may help you to prepare for if an assessment is needed now, or in the future.

1. Create a medical history

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 when organising care and support, but could also be helpful if you need to appeal an eligibility decision at a later date.

2. Good record keeping is essential

Record the date, time, contact details and a brief summary of all conversations with staff about the needs of the person you care for. This includes professionals from the Integrated Care Board (ICB), hospital, GP practice, care agency, care home or social services. This is important because the records kept by the various bodies involved in a person's care can sometimes be inaccurate or inadequate. A high level of staff turnover can also lead to lack of continuity in record keeping.

3. Request medical records

Request medical records from various bodies involved in the care of the person, for example the hospital or GP.

4. File all the information you gather

You might find it useful 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.

5. Create a paper trail

When applying for Continuing Healthcare or challenging a decision, it is often best to put your case in writing and request written responses. This creates a paper trail.

6. Read the National Framework

Use the National Framework for continuing healthcare to inform yourself about each of the 12 care domains, consider which weighting may apply to the person.

7. Try to attend all assessments or appeal/ review hearings

For example, by the Integrated Care Board (ICB) or independent review panel. Take notes of what is said and who has said it.

8. Gather evidence

Evidence from professionals such as the person’s GP may provide some support, but remember that the case has to be argued based on health care needs and not the person’s diagnosis.

9. Be aware that the appeals process follows three stages

• Local Resolution with the ICB
• NHS England for an Independent Review
• The Parliamentary and Health Service Ombudsman is the final arbiter. Unlike the previous appeal stages, their role is to check the correct process has been followed to assess eligibility, rather than to question the decision itself.

10. Ensure you are as informed as possible about the eligibility criteria and the process

If based on this you think you have a strong case, be persistent. It can be difficult and frustrating but many people with dementia have successfully secured NHS continuing healthcare funding.