Tackling the legal issues facing those in need of care is our daily business here at Just Caring Legal. People usually enter the health and social care system when they are at their most vulnerable – and perhaps never more so than when they are living with the effects of dementia.
Dementia progresses in a way that is unique to each individual and different types of dementia affect the brain at different rates and in different ways. But one thing that has been brought home to me in the course of my work is that someone’s experience of dementia will crucially depend on their personal circumstances, the support they receive, the people around them and the environment in which they live.
Since launching Just Caring Legal last year, I have been lucky enough to meet a wide range of individuals and organisations that devote their lives to making the world a less daunting, more welcoming place for people living with dementia and their families.
One such organisation is Dementia Alliance International. This is a non-profit group of people with dementia. Members of DAI come from all around the world and they seek to represent, support, and educate others living with the disease. Anyone with a diagnosis of dementia can join for free.
Dementia Alliance International was founded by the formidable Kate Swaffer. Kate was 49 years old when she was diagnosed with a form of younger onset dementia. She set up her excellent website to help others – but also to help herself. In her own (very wise) words: “I write to stay inspired, to share my thoughts, to remind me of who I really am, and to keep tabs on my life, my thoughts and my philosophies so that later on, I can remember what it is I was thinking or doing.” I was delighted to contribute this guest blog for their UK members. A blog for our UK members – Dementia Alliance International
Maintaining our autonomy and quality of life in the face of dementia is partly about how we interact with the world. But it also depends on how the world interacts with us. This is why the Alzheimer’s Society’s Dementia Friends programme is also doing vital and life-changing work. Through connecting with Claire Ford and her work with Dementia Friends I have learned much more than I ever thought possible about the small ways we can help to transform lives. Every action counts.
Dementia Friends is the biggest ever attempt to change people’s perceptions of dementia. Its aim is nothing less than to transform the way the nation thinks, acts and talks about the condition. This means tackling the stigma and lack of understanding that many people experience, which inevitably lead to loneliness, social exclusion and injustice. Unfortunately, injustice is something that occurs regularly for people with dementia.
What I have learned as a solicitor specialising in the recovery of wrongly paid care fees is that without this understanding, people’s experience of finding the required level of support for their dementia-related needs can be extremely difficult and sometimes distressing.
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 (CHC) is not means-tested and is managed and distributed locally by NHS Care Commissioning Groups (CCGs).
A recent report from the Continuing Healthcare Alliance (which counts Dementia UK, the Alzheimer’s Society and AgeUK among its members) found that 60% of the people it surveyed people did not know about the existence of NHS Continuing Healthcare funding until very late on in their journey through the health and social care system. When they did find out, it was usually by chance or being told about it by a friend. Only 3% of respondents said they found out about NHS Continuing Healthcare funding from their GP, 5% found out from their clinician, and 11% from their social worker.
Moreover, access to NHS CHC funding can be a particular struggle for people living with dementia. Since its introduction, the application and assessment process for NHS Continuing Healthcare funding has been incredibly complex. Navigating this legal process can be a daunting, time-consuming and perplexing experience – even for those who have support.
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 often needs to be “topped up”.
The report by the Continuing Healthcare Alliance (which counts Dementia UK, the Alzheimer’s Society and AgeUK among its members) concluded that the NHS CHC Continuing Healthcare system is failing people with dementia across the country. Entitled Continuing to Care? , it describes how many people are being unfairly denied this desperately needed support.
This is mainly because the criteria for assessing NHS CHC 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.
NHS Continuing Healthcare is not dependent on having a particular diagnosis, such as dementia. It is based on a full assessment of the nature, complexity, severity and unpredictability of someone’s overall care needs.
Yet the Continuing Healthcare Alliance found that people with dementia are regularly incorrectly denied NHS CHC on the grounds that their care needs are a “routine” part of their condition and its progression and therefore outside the scope of NHS CHC. This is not necessarily the case.
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. Nevertheless, the Continuing Healthcare Alliance reports people with dementia having their NHS CHC withdrawn because their condition has “improved or stabilised or even stayed the same”, even where this is a reversible phenomenon purely down to the skilled interventions of trained carers.
The report concludes that “It’s essential that rapid and robust changes are made to improve the current system”. These include rewriting the Decision Support Tool on which decisions on NHS CHC are based; and delivering a mandatory programme of training for professionals who organise and assess people for NHS CHC to ensure they fully understand the eligibility process.
Ultimately, they say the NHS England and the Department of Health must do more to ensure packages of care are “needs-driven and not purely financially motivated”.
Only then will we be able to say that we have a care system for all that is truly dementia-friendly and that it should treat every individual with empathy, dignity and respect for their own wishes and needs.
These are the problems we are committed to addressing here at Just Caring Legal. We provide advice, guidance and help to enable people to navigate through a complicated care system. We are committed to treating every individual with honesty and respect, listening to their stories carefully and responding with clear, jargon-free support.
If you wish to speak to us about your individual experience of looking after someone with complex healthcare needs or you are seeking a refund of wrongly paid care fees and you wish to find out how we can assist you, please call us on 0191 556 1078.
