How many families with a relative living with Dementia know that they could possibly have all their care paid for in full, free of charge by the NHS? We doubt there are many. The number of assessments for NHS Continuing Care Funding is particularly low.
According to the Alzheimer’s Society website, “There are over 850,000 people in the UK living with dementia, and the likelihood of developing dementia increases significantly with age. When a person develops dementia before the age of 65, this is known as ‘young-onset dementia’. Over 42,000 people in the UK are living with young-onset dementia (and are often referred to as ‘younger people with dementia’)”.
One of the biggest financial scandals in elderly care is the number of people who have been wrongly charged care fees. It is estimated that many tens of thousands of elderly people in the UK have been unnecessarily forced to sell their homes and everything they own (or saved for a ‘rainy day’) to pay for care that should be provided entirely FREE by the NHS – through NHS Continuing Healthcare Funding (‘CHC’). Understandably, to try and protect budgets, the NHS don’t readily go out of their way to publicise this little known area of available funding. So, it is quite likely that the vast majority of people with advanced Dementia, Alzheimer’s, Parkinson’s and other complex and challenging care needs are missing out on this source of available funding and instead have been fast-tracked into paying for their own care needlessly. This includes young adults, too, who are often overlooked for CHC, especially as there is a misconception that funding is only applicable to the elderly and frail in society. We have highlighted the need to consider young adults in our recent blogs:
Remember: CHC Funding is provided for individuals aged 18 and over who need full-time care – primarily for health reasons. If this applies to your relative, and yet they’re being told to pay care fees, ask for an NHS Continuing Healthcare assessment.
NHS Continuing Healthcare is available no matter what accommodation your relative has i.e. it could be their own home, a residential care home or nursing home, hospice, or other care facility. The setting is irrelevant as the assessment process is the same.
Yet, often due to ignorance or political gain, much of the focus in the press and radio call-in shows is about the cost of social care funding and most frustratingly, very little mention, if any, is given to NHS Continuing Healthcare Funding. The difference is critical as it determines who pays for care. In simple terms:
- Social care is ‘means-tested’ – so if you have assets (e.g a home) or savings above £23,250 – you will have to pay for your own care and may be forced to sell your home!
- NHS Continuing Healthcare is not means-tested, so if you meet the eligibility criteria, the cost of your assessed healthcare needs and accommodation will be paid in full by the NHS – i.e. no need to sell your home!
The lack of awareness is partly because we know CHC is still relatively unknown in the public domain, and even if you have heard of it, the chances are that for most, the assessment process isn’t properly understood, resulting in families being fobbed off or else being overwhelmed due to their lack of knowledge and tools to make a successful application for CHC. Our Care To Be Different website offers lots of free resources and articles to help you through the assessment process. If you need more ‘know-how’ look at our best-selling guide below (available as a PDF or paperback), How To Get The NHS To Pay For Care.
Also take a look at these blogs:
There are two stages to the initial assessment process:
Stage 1: This is called a ‘Checklist’ assessment. It’s a short ‘screening’ assessment that looks at different types and levels of health needs across 11 care domains, namely: (1) Breathing (2) Nutrition – food and drink (3) Continence (4) Skin integrity (including tissue viability) (5) Mobility (6) Communication (7) Psychological/emotional needs (8) Cognition (9) Behaviour (10) Drugs/medication/symptom control and (11) Altered state of consciousness. The combined scores across all needs determine whether someone warrants going through to the second stage – a full assessment.
Read more detail about the Checklist stage here: Understanding The Checklist Assessment
Stage 2: The full assessment takes place before a Multi-Disciplinary Team (MDT) and uses a form called the Decision Support Tool (DST). The DST looks at 12 care domains ( the same 11 used in the Checklist above plus an extra one (12) Other Significant Care Needs. In this full assessment, as well as giving scores as before for different aspects of care needs, the assessors also look at the nature of those needs and how intense, complex and/or unpredictable they are. This is the point at which many families find the assessment process gets very subjective – especially for people with any degree of Dementia. That’s why it’s vital that a family member or professional advocate is present at all assessments, to make sure that all aspects of health are considered and that nothing gets overlooked. There are National Framework guidelines for all Continuing Healthcare assessments, which you need to look at carefully to understand the assessment process. Unfortunately, the Guidelines can’t prepare you for what actually happens at the assessment and how it will play out. However obvious, complex, intense or unpredictable you may think your relative’s needs are, make no mistake, the assessment process is never a foregone conclusion and we have encountered some perverse decisions to refuse CHC Funding even in the most obvious cases. Rejection for CHC can mean joining the queue in what is generally a very lengthy appeal process, often spanning many frustrating months, or more likely, years! In the meantime, family assets and property may have to be sold just to keep your relative in a safe care setting with a roof over their head, whilst the appeal runs its course.
If your relative is still at home but needs full-time care…
Ask their GP to refer them for a Checklist assessment for CHC. This assessment can be done by a GP, a District Nurse, a Social Worker or other health or social care professional. Unfortunately, many GPs and medical consultants are unfamiliar with NHS Continuing Care. This is not only frustrating for families, but it means many young adults and elderly people slip through the funding net. Don’t be put off by someone telling you that your relative ‘won’t qualify’. No one can possibly know that until an assessment has actually been done. If your GP won’t help, ask your contact from Social Services – and remember that if your relative has health needs, no one should do any financial assessment until an NHS Continuing Care assessment has been carried out.
For more information read our blogs:
If your relative is in a care home and is being asked to pay care fees – or is already paying…
Ask the manager of the care home if your relative has already been assessed for CHC. If so, ask to see the assessment notes. As your relative’s representative, Attorney (if acting under a Lasting Power of Attorney) or appointed Court of Protection Deputy, you can also contact the NHS directly and ask for a copy of the notes, Checklist and decision outcome letter. Contact the Clinical Commissioning Group’s NHS Continuing Healthcare Department.
If no assessment has been carried out to date, ask the care home manager to arrange for a Checklist assessment to be done immediately. As before, no one should do any financial assessment until a Checklist assessment has been carried out.
In either situation, if you’re told your relative will not go through to a full assessment (Stage 2), and yet you believe their health needs warrant NHS funding, you can ask for this full assessment to be redone. If you’re still turned down at that stage, you can appeal.
No one should have to lose their home to pay for care unnecessarily. It could save your relative’s home from being sold!
Read more about NHS Continuing Healthcare assessment below. It could save your relative losing their home or having to pay for their care.
We would also welcome your comments if you have been through the assessment process. Please share your experiences below with others to give them encouragement, hope and support. Are there any tips you can share to help them secure CHC for their relative or child?
Our Care To Be Different website provides many of the answers to your problems and questions. Read the vast array of articles about CHC Funding and tap into our resources free of charge. Learn from other families who have had to fight the NHS for funding for their adult child.
If you want professional support or advocacy help at an assessment or MDT panel meeting, visit our 1-2-1 Support page.