Our experts explain the complexities surrounding NHS continuing healthcare funding and dementia
Q: My mother has dementia so does she automatically receive NHS continuing healthcare funding?
A: No. A person’s health needs – not their diagnosis – determines whether they are eligible for funding so having a diagnosis of dementia is not an automatic entitlement to free care. However, the progressive nature of dementia means that as symptoms worsen some people with the condition may qualify for continuing healthcare.
At Compass CHC, we generally work with clients and their families in the advanced stages of dementia as it is often the case that symptoms of this progressive disease will start to become severe enough to trigger a continuing healthcare assessment and referral. However, it is not always the case that a dementia diagnosis will automatically entitle an individual to funding. When someone is living with dementia, their needs will change over time as their condition progresses.
We will assist individuals with their NHS continuing healthcare funding applications if we feel their need for care qualifies as a ‘primary health need’ however the NHS imposes strict criteria to decide who can receive help with healthcare and many people with dementia will not meet the criteria and won’t be eligible.
What is Dementia?
Dementia is an ‘umbrella term’ used to describe a collection of progressive neurological disorders.
There are several types of dementia and some people may be diagnosed with a combination of types. People with dementia may repeat themselves often or have difficulty finding the right words and may experience increasing problems with communicating.
Other symptoms can include short term memory problems, experiencing confusion and disorientation in environments which are unfamiliar whilst other people may hallucinate, and some can experience depression and anxiety – however due to the progressive nature of the condition, each person’s experience of dementia is unique and they may not exhibit all these symptoms.
Types of Dementia
- Alzheimer’s disease – around 60% of people diagnosed with dementia, will have Alzheimer’s disease which is the most common in the over 65 age group. Alzheimer’s disease affects memory (particularly in relation to time with patients becoming unable to recall recent events), cognitive ability (poor organisational skills and an inability to perform familiar, everyday tasks), insight (patient’s decision making can become affected resulting in poor judgements being made), language (difficulty naming objects and misusing words may be noticed) and spatial awareness (difficulty performing everyday tasks like dressing).
- Vascular dementia – is caused by small blood clots preventing oxygen from reaching the brain tissue. The clots are known as Transient Ischaemic Attacks or TIAs. Vascular dementia is the second most common type of dementia to be diagnosed in the UK and whilst memory may not be as badly affected by vascular dementia as with Alzheimer’s disease, deterioration in language and communication skills can be more noticeable.
- Frontotemporal dementia – in individuals under the age of 65, frontotemporal dementia (sometimes called frontal lobe or Pick’s disease) is the second most commonly diagnosed dementia. It is a progressive condition which affects behaviour and personality and can cause people to express themselves in an inappropriate manner, particularly in public and can easily be confused with depression, psychosis or even obsessive compulsive disorder.
- Dementia with Lewy Bodies – approximately 15% of people diagnosed with dementia will have dementia with Lewy bodies. A person with Lewy bodies may shuffle when they walk and be more prone to falls as cognitive impairment can fluctuate they may experience tremors, like those who have Parkinson’s disease and their swallow function can also be affected. Patients can experience hallucinations with this type of dementia which can lead to erratic sleep patterns.
- Young onset dementia – young onset dementia can be particularly problematic and is more likely than late-onset dementia to be hereditary. It causes problems with movement, walking, co-ordination and balance.
Progressive Symptoms and How They Relate to NHS Continuing Healthcare
To determine if someone is eligible for NHS continuing healthcare funding, the patient must be assessed as having a primary health need. This assessment is undertaken by a multi-disciplinary team of healthcare professionals who use a ‘Decision Support Tool’. The Decision Support Tool (DST) is a document which helps to record evidence of an individual’s care needs to determine if they qualify for continuing healthcare funding.
The DST identifies twelve areas of need or ‘domains’. Each domain is divided into levels of need from: ‘no need’, ‘low’, ‘moderate’, ‘high’, ‘severe’ and ‘priority’. The levels reflect the nature, intensity, complexity and unpredictability of a need.
- behaviour (e.g. aggression or lack of inhibition)
- psychological and emotional needs (e.g. hallucinations or anxiety)
- mobility (e.g. risk of falls, inability to weight bear)
- nutrition – food and drink (e.g. difficulty swallowing)
- skin – including tissue viability (e.g. pressure ulcers)
- breathing (e.g. emphysema or chest infection)
- drug therapies and medication: (e.g. symptom control)
- altered states of consciousness (e.g. coma)
- other significant care needs.
The multi-disciplinary healthcare team will allocate a level of need to each care domain to determine if the individual has a ‘primary health need’ and then make a recommendation whether the individual should be entitled to NHS continuing healthcare funding.
A clear recommendation of eligibility would be expected if the individual undergoing assessment has:
- a 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 several other domains, or
- several domains with high and/or moderate needs.
Unfortunately, the way a ‘primary health need’ is defined can make it challenging for people with dementia to be approved for NHS continuing healthcare. For example, patients with dementia would be expected to score highly in domains 3 and 4 ‘psychological and emotional needs’ and ‘communication’ but these domains do not have a severe rating which can make it difficult for individuals with dementia to be awarded funding.
It has unhappily also been our experience that clients have informed us that once their relative with dementia has become too ill to display behaviour that is difficult to manage, the health professionals in charge of continuing healthcare remove the funding from the patient arguing that they no longer have the emotional or psychological needs which once qualified them for funding.
As a carer of an individual with dementia, it is important to ask for a NHS continuing healthcare assessment even if your patient / relative has been refused funding in the past.
The progressive nature of the condition can mean that overtime the individual may start to ‘tick the boxes’ of criteria which previously weren’t applicable.
New symptoms which may appear as the disease progresses can include: incontinence (additional issues such as an increased susceptibility to urinary tract infections and skin breakdown need to be considered), mobility issues (transferring a person using a hoist can be difficult because a person with dementia may not be able to understand what is happening and can be uncooperative posing a danger to themselves and others.
Additionally, when a person with dementia remains in the same position for too long they may be prone to developing pressure sores which can become infected and painful), dysphagia (people with dementia may experience problems swallowing certain foods or liquids and some may not be able to swallow at all which can cause weight loss and recurring chest infections), communication difficulties (there may come a time when a person with dementia stops communicating using language which may lead to them feeling anxious, depressed or withdrawn), loss of appetite and weight loss leading to malnutrition (extreme weight loss can affect the immune system, making it harder for the individual to fight infections and can reduce their energy levels dramatically).
How can Compass CHC help?
As we have discussed above, getting NHS continuing healthcare funding for people with dementia can be particularly problematic but our team at Compass CHC comprises a combination of qualified non-practicing solicitors and medical clinicians including nurses, tissue viability specialists and pharmacists whose expertise ensures we can understand the nuances and complexities of each case.
Putting in place arrangements for ongoing continuing healthcare is a difficult process which affects people when they are stressed and at their most vulnerable. Using a firm of experts who specialise in this complex area can be helpful and removes the stress from the family at an upsetting time.
Author: Tim Davies LLB