What is NHS continuing healthcare funding?
Some people are entitled to receive NHS continuing healthcare funding as a result of disability, accident or illness, if they have particularly intense, complex or unpredictable care needs. The funding covers the full cost of the person’s care and residential accommodation. Unlike local authority funding, it is not means tested.
How are decisions made?
Eligibility is not based on diagnosis but on proof that the individual has a ‘primary health need’. This means that their care requirements are primarily for healthcare, rather than social or personal care needs.
This is usually judged via a two-step assessment process:
- A checklist followed by
- A full assessment.
To work out if you are eligible for NHS continuing healthcare, a team of professionals should assess your needs against a set of criteria. They make a recommendation of whether they think you’re eligible or not to your local Clinical Commissioning Group (CCG – the people who make spending decisions about healthcare in your area).
If an individual is reaching the end of their life, they may instead have a Fast Track Assessment.
Getting funding can be very difficult and the system can be a minefield for families. Many people who should get funding don’t and if you don’t it can mean all your money is spent on healthcare. Read some of the stories in the caretobedifferent website to see what can happen and the pitfalls to avoid. Much is at stake, so you need to get informed and read trusted guidance.
The Alzheimer’s Society website is another excellent source of advice and guidance and we recommend it. You can read their tips on preparing your case for NHS continuing healthcare here.
The checklist for your application
This is the Alzhiemer’s Society checklist. Follow their recommendations and you will probably be more prepared than the NHS workers doing the assessment. In fact sometimes they haven’t done an assessment before. This checklist will also be useful to people who want to challenge their decisions.
- 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.
- 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.
- Request medical records from various bodies involved in the care of the person, for example the hospital or the GP.
- 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.
- 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.
- Use the Department of Health National Framework for continuing care to do your own assessment of the person’s needs.
- Try to attend all assessments or appeal/ review hearings, for example by the clinical commissioning group or independent review panel.
- Get people to support your case, such as your GP or MP.
- 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.
- 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.”
ONRECORD is ideal for this process.
How can ONRECORD help?
ONRECORD will help to keep everything in order and will make all the tasks you need to complete easier.
Keeping notes that can help with the complaints procedures is just as important as notes related to the application because many applications fail at first. Don’t assume your complaint will be taken seriously either. It can be a struggle to get heard and your notes will be crucial to help you get a complaint or appeal upheld.
Choose the right headings (labels)
If you are using ONRECORD, set up labels which mirror the headings on the Decision Support Tool (DST), which is the form used by the NHS assessors.
These headings are:
- Breathing (e.g. emphysema or chest infection);
- Nutrition – food and drink (e.g. difficulty swallowing);
- Skin Condition – including tissue viability (e.g. pressure ulcers);
- Mobility (e.g. risk of falls, inability to bear their own weight);
- Communication (e.g. speech and hearing);
- Psychological & Emotional needs (e.g. symptoms such as depression, anxiety or hallucinations);
- Cognition (e.g. memory, reasoning, orientation in time, place and person);
- Behaviour (e.g. aggression or lack of inhibition);
- Drug therapies and medication – symptom control
- Altered states of consciousness (e.g. drowsiness, coma);
- Other significant care needs.
Each domain is rated in levels of need from: ‘no need’, ‘low’, ‘moderate’, ‘high’, ‘severe’ and ‘priority’. The levels reflect the nature, intensity, complexity and unpredictability of a need.
More key tips
- To decide on the impact/severity rating, try to find out from the professionals beforehand how they decide on ratings and take a lead from that;
- Carry out the assessment over whatever period is reasonable;
- Add another label called “communications” and keep a record of ALL the contacts and other communications you have with the assessors as recommended in the second bullet point above. Don’t just record conversations but add emails, letters etc and upload copies, along with any documents too. Then you’ll have an accurate and detailed account of the history of the communications.
- Remember things can go wrong and you may need to appeal and or complain. ONRECORD will help you make sure you’ll be prepared. A well presented, thorough chronology always helps decision makers. Your own DST assessment with recordings, ratings and supporting evidence on a timeline and calendar will be useful too when presented in a report format if you’re challenging the professionals’ analysis.
Step by step guide to the assessment process
- The first step for most will involve a healthcare professional using a checklist to decide whether it is appropriate to undertake a full NHS continuing healthcare assessment. Note that this does not decide if an individual is eligible for funding, only whether they should be recommended for a full assessment.
- If the checklist identifies the need to carry out a full assessment, the Clinical Commissioning Group (CCG) will be contacted.
- The full assessment is carried out by a multi-disciplinary team of two or more health or social care professionals familiar with the applicant’s needs. In some cases, the multi- disciplinary team will contact the specialists already involved with the applicant’s care to build a better picture of needs.
- The information from the full assessment will be used by the multi- disciplinary team to complete the ‘Decision Support Tool’ (DST).
- The assessors will allocate a rating of need to each care domain to determine if the individual has a ‘primary health need’ and then make a recommendation to the CCG as to whether the individual should be entitled to NHS continuing healthcare.
A clear recommendation of eligibility would be expected if the individual undergoing assessment has:
- ‘Priority’ level of need in any four domains;
- Two or more instances of severe needs across all domains.
If the following apply, this may, depending on the combination of needs, also indicate a primary health need:
- One domain recorded as severe together with needs in a number of other domains; or
- A number of domains with high and/or moderate needs.
Complaining and appealing
The Alzheimer’s Society provides very useful guidance:
Having as much documentary evidence as possible will help you to make a strong case. You might want to look at the care needs portrayal (sometimes called an individual needs portrayal) and work out whether it was used to support the Decision support tool and the overall decision. You should also ask for social services, care home and NHS patient records. If you are asking for a review to look back over a period of time, look for copies of old assessments and reports showing the level of needs at that time. Care plans and notes, including any daily progress records from the person’s care home, may also be useful. Your own notes on the person’s medical history and needs will also be useful.
( A care needs portrayal is a document that a multi-disciplinary team can complete when carrying out an assessment for NHS continuing healthcare. It records a person’s care needs and should be used as well as, rather than instead of, the Decision Support Tool )
For information about – When does the NHS pay for care? How to apply for NHS continuing healthcare in England and how to appeal if it is not awarded – download the Alzheimer’s Society booklet here.