Top doctors 'frustrated' by lack of support for dementia patients

The push to increase diagnosis numbers mean politicians "appear to be doing something" but they are "missing the point", Dr Richard Vautrey, deputy chairman of the British Medical Association's (BMA) general practitioners committee.

He said that some people face months of uncertainty as they wait to be seen at a memory clinic. And once they have been diagnosed there is not enough support because of funding cuts to social services, he added.

Dr Vautrey said: "You would never tolerate it in any other area of medicine. Say you were to diagnose someone with cancer you wouldn't say 'well sorry we're not going to treat your cancer'. You would expect within two weeks to see a specialist, getting investigations while dealing with concerns and worries.

"Whereas with dementia it can be months before you see a specialist and many patients and carers are left dealing with this uncertainty for long periods of time. And when they get a diagnosis they are often left without necessary support because social service cuts have had such an impact on the services available.

"The patients themselves have now got this diagnosis but no one is there to provide them with support."

On Wednesday, medics at the BMA's annual meeting in Belfast voted in favour of a motion which said: "The Government drive for earlier diagnosis of dementia without the corresponding support for those receiving such a diagnosis is pointless and only serves to increase distress for patients and families".

Commenting on the motion, Dr Vautrey said: "The key concern that GPs have had is that there has been a focus on counting numbers and hitting targets rather than what we see is as the real gap which is providing services to patients both in terms of diagnosis and investigation but the crucially support.

"Not only for patients with dementia but carers as well. That is what has been really lacking.

"GPs have been really frustrated.

"Politicians have appeared to have been doing something by getting GPs to tick boxes and missing the real point of what patients are wanting which is fundamental support.

"We are really irritated when those services are not there or seem to be disappearing - they are being undermined in many ways by various social services cuts."

He added: "The Government and NHS England are just not doing enough. They talk the talk about having dementia as a priority.

"The Prime Minister and Jeremy Hunt have done a lot in terms of raising it as an issue and highlighting it as a priority, which is a good thing, but then in terms of delivery, as we have seen repeatedly in years gone by, where they say that there is money available for a particular area but then it is not ring-fenced or protected among various other priorities."

Dr Gary Wannan, chair of the BMA's community care committee, and a consultant child and adolescent psychiatrist in Kensington, central London, added: "As a doctor you feel very responsible in giving a diagnosis and you want to make sure that in giving anyone a diagnosis it is going to be to their benefit. There is no point giving somebody a label but then not being able to provide support."

Professor Alistair Burns, NHS England's national clinical director for dementia, said: "Awareness of dementia is at its highest and we believe that timely diagnosis of dementia allows people to access the emotional, practical and financial support that brings.

"There are now around 435,000 people with a formal diagnosis of dementia who can benefit from post diagnostic support. We want it to be normal to talk about memory problems and to encourage people to come forward for an assessment if they or their families have concerns."

Meanwhile, leading nurses at the Royal College of Nursing (RCN) congress in Glasgow, have called for improvements in how dementia patients are treated in hospitals.

Dawne Garrett, professional lead for care of older people and dementia for the RCN, said: "There have been big improvements in awareness and understanding of dementia in recent years, but the experience of too many people who go into hospital is still falling short.

"It is vital that improvements are made so that nobody suffers unnecessary distress. This is partly about the hospital environment and processes, but it is also about better provision in the community and improved social care.

"Many of us will be affected by dementia in the future, and we need to act. Better treatments are part of the solution but we need better strategies in place right now to minimise distress and offer the best care."

A BMA spokesman said: "Diagnosing and treating dementia effectively is one of the most important challenges facing the NHS and early identification can play an important role in helping patients plan their care. This is something doctors from all parts of the NHS are involved in, both in community and hospital settings, with many using their clinical skills and professionalism on a daily basis to provide the best care for these vulnerable patients and their families.

"However, this can sometimes be undermined by politically motived targets that are not based on good clinical practice. More widely, all healthcare professionals across the NHS want greater investment and support for all dementia services, so that the current unacceptable waiting times to access specialist help can be reduced to enable patients and carers to get more rapid access to much needed treatment and support."

Jeremy Hughes, chief executive at the Alzheimer's Society, said: "As has been acknowledged today, there is a desperate lack of fundamental support for people with a dementia diagnosis.

"This, as the BMA asserts, needs urgent attention as a diagnosis and support must go hand-in-hand.

"However, this deeply-concerning situation will be made far worse by denying someone a dementia diagnosis.

"Health and social care commissioners need to know the number of people with dementia in their area to commission adequate support.

"If this number decreases because the NHS stops diagnosing dementia, the availability of support will wither further, heaping additional pressure on GPs, the health service and families as people's needs spiral.

"Instead the BMA needs to work together with commissioners to design services that provide people with dementia the support they need rather than backing away from the issue.

"It is wrong to regard a diagnosis of dementia as 'pointless'.

"A timely diagnosis of dementia gives an individual the opportunity to be at the centre of making important decisions about their future while they still have the capacity; such as advanced care planning and putting a power of attorney in place.

"Everyone has a right to know they have a disease. No-one would condone not telling someone they have cancer and nor should we for those with Alzheimer's or other forms of dementia."