Support not statistics

As the UK Dementia Congress is staged in Brighton this week Alistair Burns, NHS England’s National Clinical Director for Dementia, explains why providing post diagnostic support to everyone with dementia and their carers is essential:

Dementia currently has a high profile. Never more so than in the last few weeks with the Care Quality Commission Report on the experience of care in hospitals and care homes, and the National Enhanced Service for dementia – which incentivises GPs to be more proactive in making a diagnosis and recording patients on their QOF register.

Both underscore the need for high quality support for people with dementia and their carers.

Dementia is a devastating condition. It affects around 800,000 people in the UK, a number which can easily be multiplied by two, probably by three, and possibly by four if you consider the impact on families and carers.

There is no cure for dementia, or its principal causes, Alzheimer’s disease and vascular dementia but care is important – post diagnostic support is essential.

The evidence base for the clinical and cost effectiveness of this support is growing which includes psychosocial interventions such as Cognitive Stimulation therapy, medication for Alzheimer’s disease and carer support interventions (BMJ 2013; 347).

Post diagnostic support, by definition, follows a diagnosis. How are we doing with that?

In England, there are an estimated 683,000 people with dementia and we currently diagnose 365,000. For some time, it was felt that this could be improved upon, hence the ambition from NHS England, in parallel with the Prime Minister’s Challenge on dementia, that two thirds of people with dementia should have a diagnosis and post diagnostic support by 2015.

Two thirds is 455,000 which leaves a gap of 90,000.

The variation across CCGs is two-fold, something which is not accounted for by the profile of the local population mix but is more to do with clinical leadership, local interest and joint commissioning between health and social care.

Why was the two-thirds rate chosen? The figure reflects what some areas were achieving in England and also in Scotland and Northern Ireland. It was ambitious but reflected how the system needed challenged. It is a national ambition and not a specific target for individual CCGs or practices.

The Care Quality Commission Report “Cracks in the Pathway” examined 29 hospitals and 129 care homes and found that in most areas care for people with dementia was rated variable or poor. While examples of good care outweighed those of bad care, the report did highlight the need for general hospitals to pay attention to mental health as much as physical health (emphasising Parity of Esteem) and has shone a light on poor practice.

It has also emphasised the importance of post diagnostic support – for people in hospitals where the correct recording of dementia can alert staff to the needs of patients, in care homes where person centred care consequent on a diagnosis can improve outcomes for residents and, arguably most importantly, that communication across the health and care sectors is improved.

Some have questioned the announcement of the National Enhanced Service which incentivises GPs to the tune of £55 for each new dementia diagnosis

Is it ethical? It would be wrong to exaggerate the level of financial incentive. It is paid to GP practices – not individuals – and is unlikely to amount to more than a few hundred pounds a year. It is money which goes to the practice to support a range of activities including diagnosis and post diagnostic support.

Why not spend the money on post diagnostic support? To get post diagnostic support you need a diagnosis, therefore it would not help the estimated 300,000 who do not have that.

How does it fit in with the existing Dementia (Directed) Enhanced Service? It complements it and the two can run in parallel (the new National Enhanced Service runs from 1 October 2014 until 31 March 2015).

NHS England has, in collaboration, developed a number of things to support CCGs and practices in their work on dementia. The Dementia prevalence calculator offers a measure of the local prevalence and gives an idea of the current diagnostic rate. For the first time in September2014, we have access to more than annual rates of diagnosis and can now assess monthly diagnosis rates across CCGs and also practices although the variance at practice level is high.

The dementia Primer provides information about dementia for colleagues in primary care. We know that correct coding for dementia – that is, harmonising the clinical records – can result in an increase in the numbers of people correctly recorded by up to 10 per cent.

In terms of post diagnostic support the Royal College of General Practitioners Dementia Roadmap can provide for each CCG a list of the services that are available locally.

Dementia is a priority for the NHS and specifically for NHS England. The Forward Five Year View for the NHS presents a bold vision which emphasises the need for care for people with dementia in their own homes (with integration of care) and in care homes. Recent public and professional awareness have highlighted the primacy of post diagnostic support following diagnosis and the fact that dementia still carries a stigma which may be lessening but still arouses strong passions.

Professor Alistair Burns

Alistair Burns is Professor of Old Age Psychiatry at The University of Manchester and an Honorary Consultant Old Age Psychiatrist in the Greater Manchester Mental Health NHS Foundation Trust. He is the National Clinical Director for Dementia and Older People’s Mental Health at NHS England and NHS Improvement.

He graduated in medicine from Glasgow University in 1980, training in psychiatry at the Maudsley Hospital and Institute of Psychiatry in London. He became the Foundation Chair of Old Age Psychiatry in The University of Manchester in 1992, where he has variously been Head of the Division of Psychiatry and a Vice Dean in the Faculty of Medical and Human Sciences, with responsibility for liaison within the NHS. He set up the Memory Clinic in Manchester and helped establish the old age liaison psychiatry service at Wythenshawe Hospital. He is a Past President of the International Psychogeriatric Association.

He was Editor of the International Journal of Geriatric Psychiatry for twenty years, (retiring in 2017) and is on the Editorial Boards of the British Journal of Psychiatry and International Psychogeriatrics. His research and clinical interests are in mental health problems of older people, particularly dementia and Alzheimer’s disease. He has published over 300 papers and 25 books.

He was made an honorary fellow of the Royal College of Psychiatrists in 2016, received the lifetime achievement award from their old age Faculty in 2015 and was awarded the CBE in 2016 for contributions to health and social care, in particular dementia.

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  1. pauline hardinges says:

    Too often patients in care homes who have complex needs and dementia, are being turned down for CHC funding because ‘THEY ARE PRESENTING WELL’ the reason being they are having their needs met. Which means they are being assessed on met needs which is not adhering to Government guidelines. My question is why put a criteria together if it is ignored?