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JDC Asks...

Wed 06 Mar 2019

JDC Asks March/April 2019

The new NHS long-term plan promises to improve care for people with dementia, whether in hospital or at home.  What should the NHS's top priority be to achieve this?

 

Despite the new NHS plan promising to improve care for people with dementia, it is fairly modest in how dementia is featured compared to other health conditions. There are substantial sections dedicated to cancer, cardiovascular disease, stroke, diabetes, learning disabilities, children’s and adult mental health. But there is only one short paragraph dedicated to dementia, with occasional references elsewhere. Tackling some of those other conditions should help reduce the numbers of people developing dementia in the future, but one could still say that giving dementia equal billing should be the top NHS priority. Dementia is the leading cause of death in the UK, causes more disability in later life, ahead of some cancers, cardiovascular disease and stroke, and costs the UK significantly more than cancer and cardiovascular disease combined. But perhaps that modesty isn’t so bad as it indicates a different priority that the NHS could focus on. People currently affected by dementia need care and support, to be included in their communities, and have their rights and personhood respected. They are unlikely to live long enough to see the appearance of truly effective treatments or a cure. This illustrates the limitation of seeing dementia only in biomedical terms. So perhaps the priority should be the NHS putting that modesty into practice by sharing more resources with social care, understanding dementia as a disability as well as a disease, and taking a rights-based approach to providing support for people affected by the condition.

Toby Williamson is an independent health and social care consultant

 

The NHS plan is a step in the right direction but doesn’t signal the kind of step change that is needed. While initiatives such as greater use of technology and a focus on prevention are highlighted and are laudable goals, there is insufficient acknowledgement of the climate in which such developments need to take place, thrive and sustain themselves. It is my belief that in a sea of competing and pressing priorities, the key priority is increased funding to galvanise community-based initiatives. In recent years we have seen a reduction in local authority funding and the harsh cuts that services have had to endure. Tough decisions have had to be made and attention has further shifted towards who or what can pick up the shortfall. Yet there seems to be little acknowledgement of the knock-on effects of cutbacks on the health and wellbeing of citizens or the inevitable impact on NHS use and resources further down the line. In response, there is recognition that more can be gained from volunteers who arguably complement or supplement statutory services that are lacking. Used appropriately technology can reach, communicate with and support more people than a community-based worker could ever get around to in real time. Family carers of people with dementia are under significant pressure to fill the gaps in service provision due to cuts and geographical variations in provision. They provide care and support often to the detriment of their health and finances. It is time to realise that good quality services and support require good funding.

Tracey Williamson is Dementia Carers Count professor of family care, Association for Dementia Studies, University of Worcester

 

Despite being the UK’s biggest killer, dementia is currently not properly supported by the NHS, leaving 850,000 people and their families out in the cold. So the new NHS plan’s ambitions for integrated health and social care are welcome. Specifically, proposals for “navigators” to co-ordinate older people’s health care - including plans to embed Alzheimer’s Society’s Dementia Connect service in the NHS - will make a huge difference to people with dementia, who typically deal with a maze of over 20 care professionals by themselves. Integration may seem a vague concept but through our Fix Dementia Care campaign we hear how it could have saved lives. From the woman who passed away in hospital after months of waiting for a care home place, to the man who died of pneumonia after being discharged in the night to free up a bed, people with dementia are falling through the cracks in a disjointed system. The NHS plan’s goal of preventing 150,000 dementia, heart attack and stroke cases over 10 years hardly seems ambitious. And although relevant to many parts of the plan, dementia wasn’t given its own section, so we must see dementia-specific details in programmes to meet commitments including those on disease prevention, workforce training and research. While we welcome the plan, it’s one side of a coin; we need the long overdue social care Green Paper to fully address how people with dementia will get the support they need. We urgently need plans to become actions and unite the two sides of the system.

Jeremy Hughes is chief executive of Alzheimer’s Society

 

The aim in health and social care is that services should enable people to live well with dementia. But the NHS plan confirms that, although the UK has an ageing population, this does not necessarily ensure people can live longer while also living well. In order to promote this, services strive to provide person-centred care, tailoring interventions and treatments to the specific needs of the individual. After all, one size surely does not fit all. However, to truly provide such a high personalised level of care, particularly in hospital, one must endeavour to at least know and understand the person and not simply treat the diagnosis. Community settings are more conducive to this approach, but only when people are well enough to be out of hospital. If personhood is key to successful delivery of treatments and care, it takes time, education, knowledge and volition to holistically assess and establish the necessary therapeutic relationships. The risk of not meeting targets should never hinder the quality of care at any level. The NHS needs not only to provide more resources to multi-disciplinary teams but the right resources. For example, more Admiral Nurses to support those who care for a person living with dementia, more focus on reducing social isolation, and more effort to improve community facilities to make them accessible, purposeful and meaningful. Resources permit time and time permits personhood. In my opinion, to be treated as a unique individual must always be the top priority.

Beverley Drogan is senior occupational therapist and team lead at Manchester Local Care Organisation.

 

The focus on prevention is laudable as is the focus on long-term conditions. However, people with dementia and their families are facing increasingly reduced services and a lack of support. Calls to our Admiral Nurse Dementia Helpline frequently present these themes. We clearly have two separate systems - one for health and one for social care. While we have learned some of the aspirations for the health care landscape for the next 10 years, the silence around social care is deafening. Until we get a joined-up approach between the two, we run the risk of people with dementia and their families falling through the gap. We should not tolerate a situation where dementia care, and social care more widely, are kicked into the long grass. This has a negative impact on an ailing NHS, the thousands of unpaid carers propping up the system and ultimately people with dementia themselves. Our specialist dementia Admiral Nurses are bridging the gap by providing community support and educating health care professionals around best practice in dementia care.  Aspirational documents are all well and good. They mean nothing, however, without action now for the thousands of families facing one of the biggest health issues of our time. 

 Paul Edwards is director of clinical services at Dementia UK

 

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