The local independent charity Alzheimers’ Support has compiled a telling report on the current state of diagnosing dementia in Wiltshire. Barriers to Dementia Diagnosis in Wiltshire – a survey report highlights ‘the shockingly long’ waiting times for appointments with memory services in the county.
Last year Wiltshire was ranked 161 out 169 Primary Care Trusts for dementia diagnosis. It is estimated that there are some 6,300 people with dementia living in Wiltshire – and only one third of them have a medical diagnosis.
Alzheimers’ Support based their research on three exclusive surveys carried out with a grant from Comic Relief. Their report underlines how, within the medical profession and the NHS, diagnosis and support for dementia has been a ‘Cinderella’ service – something the government is now taking some steps to counter.
Dementia is not a simple or straightforward condition. It includes a varied spectrum of conditions and the conditions themselves can develop at very varying speeds.
One of the report’s main findings is the delay by patients themselves in choosing to come forward to seek help – with some people waiting sixteen months before taking concerns to their doctor. The biggest single cause of delay was patients’ belief that ‘getting forgetful is a normal part of ageing.’
While some of those surveyed reported that GPs had not taken their condition seriously, GPs said they were unwilling to make referrals to specialist clinics when the waiting times were so long. GPs described the current service as ‘disgraceful’, ‘woeful’, ‘unacceptable’ and ‘dreadful’.
When asked how matters could be improved, GPs who took part in the survey were split between those calling for more funding for the existing service, and those who wanted to explore new ways they could diagnose and prescribe rather than relying on consultants and specialist clinics.
As Marlborough News Online has reported, one part of the new Clinical Commissioning Group (CCG) for Wiltshire has already started a pilot scheme which allows doctors to prescribe drugs that have previously only been prescribed by consultants at the end of very long waits for appointments. This scheme, it is hoped, could be rolled out across the whole county – if it’s a proven success.
Alzheimers’ Support has uncovered some distressing examples which give personal backing to the problems the report uncovers.
David and Kay Hyde of Marden spent two years pushing their GPs to take Kay’s symptoms seriously – they thought it was just depression and she was on anti-depressants for a year. Her dementia was confirmed by doctors at Salisbury hospital when she was there for other matters.
But they waited another fourteen months to be formally diagnosed and treated by Wiltshire’s memory services (which are commissioned from the Avon and Wiltshire Mental Health Partnership –AWP) for vascular dementia.
They went to AWP’s Victoria Centre based at Great Western Hospital and Kay became part of a drugs trial run there by a commercil clinical tial team. Her scans had to be sent to the USA for analysis using the latest technical equipment and these showed Kay’s condition was almost certainly the result of a series of mini-strokes.
David told Marlborough News Online that he had felt ‘isolated and neglected’: “We learnt more from attending the Victoria Centre than anywhere else, because they had a research programme. They suggested a better prescription drug.”
He thinks part of the answer to the present situation is “More consultants taking a pro-active view.” But in the end “It’s all down to budgetary constraints – and it shouldn’t be.”
There are at least 750,000 people with dementia living in the United Kingdom – and this figure is expected to double over the next thirty years.
The prime minister’s ‘Challenge on Dementia’ scheme aims to speed up diagnosis and a pilot scheme will involve a new centre for MRI scans, a mobile diagnosis vehicle and an App to help doctors diagnose dementia. A Downing Street spokesman said “With projects like this, we may be able to transform how diagnosis works in the UK and elsewhere.”
But the App has brought some withering criticism from GPs who describe it as ‘pie in the sky’ and a ‘gimmick’. None of these government pilots is taking place in Wiltshire.
So how can the situation in Wiltshire explored so thoroughly in the Alzheimers’ Support report be improved?
Dr Steve Rowlands was Medical Director of the Wiltshire Primary Care Trust (also known as NHS Wiltshire), and now chairs the CCG which, under the coalition government’s restructuring of the NHS, will take over from NHS Wiltshire in April 2013. He gave Marlborough News Online this statement:
We are proud of the progress made to ensure services are improved for people living with dementia in Wiltshire, but we are acutely aware of the need to improve further and we are working jointly with colleagues at Wiltshire Council, AWP, the voluntary sector and local GPs to improve early intervention and diagnosis of dementia.
We have agreed an action plan with Wiltshire Council to ensure we are delivering on the National Dementia Strategy, and we are working very constructively with a specially convened group of advisors to oversee progress, to which Alzheimer’s Support plays a valuable part.
We’re in the process of changing the way services are provided, to support the needs of our patients and their carers and give them confidence that they can rely on these services. The main emphasis of our current joint work is to ensure that people are diagnosed and started on treatment by their GP with assessment from the Memory Service nurse, rather than waiting for an assessment by a consultant at hospital.
For people who are showing signs of dementia under the age of 80, and those people who during their assessment are considered to be complex, will still see a specialist.
We’re already seeing great improvements in waiting times – for instance, those people who have been treated in primary care wait four weeks for their treatment to start. With the continued support of AWP, Wiltshire Council and our hospital partners, we are confident that we will see some constructive improvements to services for people with dementia in Wiltshire.
The main recommendation from the Alzheimers’ Support report is for a campaign to increase public awareness of dementia with special effort put into schemes based in GP surgeries and sheltered housing schemes. And the charity will be taking a lead in this through their Comic Relief funded project.
The full report can be read on the Alzheimer’s Support website from Thursday, November 8.
Caffe Nero planning appeal to be heard in January
