A blog for our UK members

Over the last few weeks and months, I have been watching with interest various matters in the UK, things happening to people with dementia there, that are a lot more than unhelpful. Wendy Mitchell has written a number of excellent blogs on her experiences of being denied Personal Independence Payments (PIP), and I know Chris Roberts and have no doubt many others have also recently had significant issues around similar things. It seems they want us to live as well and as independently as humanly possible, but then when we do, we are not believed we have dementia, and for many, funding is cut, the very thing that is needed to maintain this independence.

Thanks to the Internet and social media, I often connect with professionals who may be able to offer support, and have connected with Rosalind Hughes via Twitter. Obviously, DAI does not endorse people or organisations, but if we feel sharing the services of a particular individual or organisation to our members might be of value, we do so. This blog is one of those times.

Rosalind Hughes is a solicitor and Head of Just Caring Legal. She has worked in the legal profession since 1995 and has become particularly interested in adult social care over the years due to her work at the Citizen’s Advice Bureau.

Having met families who were wrongly paying for substantial care home bills, who are experiencing significant healthcare issues such as Alzheimer’s, or other forms of dementia, cancer and Parkinson’s to name but a few, she felt driven to set up her own specialist firm dedicated to challenging these cases. Rosalind has a great deal of empathy with families who have been wrongly denied access to NHS Continuing Healthcare and seeks refunds of care fees and offers other vital services to complement her work to provide a holistic service. We do not know her fees, but her guest blog below may be able to support some members who run into issues such as the ones Wendy Mitchell is facing.

Possible ways of funding care needs when a family member has Dementia

By Rosalind Hughes, Solicitor and Head of Just Caring Legal

“Recognising that the care needs of a family member with dementia are more than family and friends alone can manage can be hard. Finding and affording a way of meeting those needs so they can continue to live as full a life as possible can be just as tough.

Many people don’t realise that there is full NHS funding available for care and nursing home fees where an adult needs ongoing support outside hospital as a result of disability, accident or illness. This funding, called NHS Continuing Healthcare is not financially means-tested and is managed and distributed locally by NHS Clinical Commissioning Groups (CCGs).

However, access to NHS Continuing Healthcare funding can be a particular struggle for people suffering from dementia. Some are lucky enough to be found eligible, while others with similar levels of need have to fund their own care or rely on local authority funding, which is means-tested and increasingly relies on having to be “topped up” and paid for by by third-parties, sometimes to the tune of hundreds of pounds a week.

Why this lottery? It is mainly because the criteria for assessing NHS Continuing Healthcare eligibility, which hinges on the person having care needs arising from a “primary health need”, leaves too much room for interpretation. While the National Framework for NHS Continuing Healthcare and NHS funded nursing care has been in place since 2007 to give guidance to CCGs, in reality there is very little consistency in decision-making. Also, the complexity means many people struggle to understand (and are often not fully informed) whether their loved ones are entitled to NHS Continuing Healthcare.

A recent report from the Continuing Healthcare Alliance (which counts Dementia UK, the Alzheimer’s Society and Age UK among its members) concluded that the NHS Continuing Healthcare system is failing people across the country. Entitled Continuing to Care?, the report describes how many people are being unfairly denied this desperately needed support. And how even those who are granted NHS Continuing Healthcare funding are often given inadequate care packages that don’t meet their needs.

The National Framework makes clear that eligibility for NHS CHC is not dependent on a particular disease, diagnosis or condition. It is based purely on establishing a ‘primary health need’ and a full assessment of the nature, complexity, intensity and unpredictability of someone’s overall care needs.

Yet the Continuing Healthcare Alliance found that people with Dementia are regularly incorrectly denied NHS Continuing Healthcare on the grounds that their care needs are a “routine” part of their condition and its progression and therefore outside the scope of NHS Continuing Healthcare. This can be incredibly distressing and frustrating for families and loved ones who believe that their loved ones actually do meet the eligibility criteria.

The National Framework also makes it clear that just because needs are being ‘well-managed,’ this does not mean they are no longer a factor and should not be marginalised. Nevertheless, the Continuing Healthcare Alliance reports people with dementia having their NHS Continuing Healthcare withdrawn because their condition has “improved or stabilised”, even where this is a reversible phenomenon purely down to the skilled interventions of trained carers.

The report concludes that many decisions on NHS Continuing Healthcare are budget-led rather than needs-based and person-centred as stipulated by the National Framework. There can be conflicts of interest within CCGs, where the person in charge of assessments is also the one charged with hitting savings targets on NHS Continuing Healthcare.

This can make applying for NHS CHC a highly distressing and frustrating experience. On the other hand, it also means in many cases, decisions can be challenged on the basis that the National Framework has not been properly followed. The Times Newspaper recently ran the story of how Vicki Keiller, a 90-year-old woman with dementia, paid nearly £100,000 in care fees when she should have been receiving NHS Continuing Healthcare. She got her money back – but only after a two-year struggle between her determined son Don, a university lecturer, and the local CCG. Success stories are possible with a bit of perseverance and first-class knowledge of the National guidance and benchmark cases such as Coughlan.

So, what advice do we have for people who believe that a loved one with Dementia should be receiving NHS Continuing Healthcare? In a nutshell, it is this.

Don’t believe everything you are told 

You may hear that your loved one “won’t be eligible” for NHS CHC because they are not “at death’s door” or “don’t have to be PEG-fed” – or that someone at the CCG has already carried out an assessment and they don’t qualify. But there are rules about the assessment process which the NHS has to follow, and these include carrying out an initial checklist to decide if an NHS CHC assessment is appropriate, when asked to by the family. If they do not comply you can challenge this.

Keep meticulous dated records of care needs 

When challenging an NHS CHC decision, evidence of care needs is crucial and the family have a unique perspective. Care home or hospital/medical records sometimes omit vital relevant information so check them regularly to make sure they are accurate, complete and up to date. Keep your own detailed journal charting your loved one’s condition and needs, especially (not solely) in the 12 vital NHS CHC “domains” – a copy of these can be downloaded here. Cross reference this with the care records to ensure they present a true and accurate picture. If they don’t, challenge and question those in charge of the care.

Be persistent

Unfortunately, it is regularly reported that CCGs may be making decisions on NHS CHC eligibility based on budgets rather than purely on care needs. It is often only those, like Don, who refuse to give up, that succeed. If local disputes resolution fails you can take the case to an Independent Review Panel, and if this fails, to the Parliamentary Health Service Ombudsman. At Just Caring Legal, I am regularly guiding clients through this complex process and I feel passionate about making a difference and seeking to secure positive outcomes for vulnerable elderly clients.”

Thank you Rosalind.


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