The national dementia strategy is one year old but a key study has found progress is slow. Vern Pitt visited Croydon – which has long been held up as a leader in dementia care – to ask professionals and carers about how the strategy’s objectives and the challenges posed by the condition are being tackled
Twelve months ago the government set out its plan to meet one of the biggest challenges facing England’s health and social care system – dementia.
Over the next 30 years, the number of people with the condition is predicted to double to about 1.2 million. The cost to the English economy, notably for informal and formal care, is expected to rise from £15.9bn in 2009 to £34.8bn in 2026.
The five-year national dementia strategy was designed to address this while also tackling problems in existing services, such as the failure to diagnose dementia, services intervening too late, an under-skilled workforce, and a lack of integration between health and social care.
However, ahead of the strategy’s first anniversary, the National Audit Office issued a report last month warning that the strategy was at risk of failing to deliver on the Department of Health’s “ambitious and comprehensive” plans.
The public spending watchdog said the DH’s failure to make dementia a national priority target for the NHS meant primary care trusts did not see it as a “must do” area.
It found a lack of local leadership, ongoing shortfalls in training and said the DH had underestimated the strategy’s costs.
The DH has good grounds to take the NAO’s points seriously as a highly critical 2007 report by the watchdog was a pivotal moment in the development of the strategy. It highlighted good practice but also systemic problems with services.
Examples of good practice included the memory service in Croydon, established in 2004, which the NAO said “can provide a cost-effective way of significantly increasing the number of people seen for early diagnosis and intervention”.
The strategy calls on councils and primary care trusts to commission an early intervention and diagnosis service along similar lines.
The first year of the strategy’s implementation has presented Croydon Council and PCT with a new set of challenges as they attempt to remain at the forefront of dementia care.
National dementia strategy key aims in England
The strategy set three overarching aims – improving awareness of dementia, early diagnosis and intervention, and quality of care – which would be achieved through 17 objectives, including:
● All people with dementia to have access to early diagnosis and intervention.
● Dementia advisers to be available to carers and those with the condition.
● Access to a flexible range of community support, including specialist home care.
● Improved dementia care in care homes including through specialist in-reach mental health services.
● Effective basic training to ensure health and social care staff have the skills they need.
● Councils and PCTs to produce local joint commissioning strategies.
The DH provided PCTs with £60m in 2009-10 and plans to spend £90m in 2010-11 to drive implementation but this was not ring-fenced. Councils and PCTs have been asked to produce a “baseline review” by March 2010, setting out how they are faring against each strategy objective.
The DH intends to use the reviews to identify and share good practice, target support to areas that are falling behind and accelerate implementation more generally. The strategy will be followed by plans for Scotland, Wales and Northern Ireland.
➔ More details at www.communitycare.co.uk/nds
Here, we speak to key players in the south London borough – and carers on the receiving end of their policies and services – to gauge progress.
How dementia advisers benefit all
Hannah Miller, executive director, adult services and housing, Croydon Council
Hannah Miller’s attitude to the arrival of the strategy has been to avoid complacency at the council following past success.
“We have had a lot of publicity to say that we are ahead of the game but if we rest on our laurels we won’t be,” she says. “It has reaffirmed the commitment of staff.”
Croydon is using its share of the £60m allocated for implementing the strategy in 2009-10 to pilot new services. “We received £180,000 and we’ve used that to provide a number of dementia advisers,” says Miller. “They work directly with the carers or people who are worried they are developing dementia.”
This is not only benefiting those using the adviser service but others outside the service as well, Miller says. She adds: “What it will do is give us a whole base of evidence for developing our information [online].
“The idea is to have a virtual adviser so a carer can come onto our website or the NHS website and there’s information in a whole database.” In doing this she hopes to progress towards meeting the strategy’s goals of providing accessible information for all.
However, embracing innovation is not without a few pitfalls as Miller has learned over the last year.
She says: “One thing we were keen to develop was a support worker scheme to work out of our extra care housing. We did pilot this in one part of the borough and where we had the referrals we had some innovative work going on but we didn’t get the referrals.”
Miller hasn’t given up on the idea but believes that it may need a broader catchment area if it is to work properly.
Personalised services the key
Trevor Mosses, head of commissioning, older people and physical disabilities, Croydon Council
For Trevor Mosses, improving dementia provision in Croydon means personalising services.
He says he constantly tries to balance change and stability while striving to move towards ever more flexible services and away from block contracts.
He says: “One of the challenges is trying to square that circle. We have built up good contracts and managed the market. The dementia strategy lets you ask how you then change that and bring providers with you. If you don’t work with providers then the dementia strategy will fail.”
However, he feels the strategy means he can make these changes with some level of security. “There are financial difficulties we will face as an authority and the strategy is ensuring that dementia remains at the top of the priorities,” he says. “So, when I go and talk to providers I have the confidence that the money will be there and we will have a five-year contract.”
Further stability has come from working with commissioning partners in the PCT, which Mosses says has been built by working on the strategy’s initiatives. The two are now planning joint investment in self-directed support services.
Responding to the criticisms in the NAO report about a lack of communication with independent providers from commissioners about the strategy, Mosses says he is already bridging the gap with care agencies. “We are in the early stages of planning training for domiciliary care providers in terms of their managers and organisers,” he says.
“We want to ensure they have awareness of dementia and communication skills. Most of the people who have dementia live at home with services from our general staff,” he says.
GPs’ knowledge of dementia limited
John Haseler, assistant director, mental health and substance misuse commissioning, Croydon PCT
John Haseler confirms some of the major conclusions of the National Audit Office report, which said the absence of dementia on the NHS national priority list had hampered the strategy’s implementation.
“Yes, the list has definitely held back the ability to make changes,” he says. “The missing link is translating the strategy into the main planning tools and funding arena for PCTs; that’s the strategic plan and the operating plans we do each year. There’s a hierarchy of priorities there and if it’s not on the ladder it’s going to stand less chance,” he says.
“I’m putting together our operating plan for 2010-11,” he says. “We are making plans to extend the memory service’s capacity.”
There is the sense that Haseler might have liked to have expanded the memory service earlier. However, he says the PCT has faced increased demand for NHS continuing care funding this year – under which PCTs support the long-term care costs of people with health conditions.
Even in Croydon, where dementia has long been a high priority, he says there is a lot of work to be done in educating frontline staff.
“For GPs dementia understanding is extremely varied,” he laments. “Information from the memory service and mental health services shows as a whole group their level of understanding, empathy and knowledge is increasing but that still covers a wide range of levels of performance.”
Haseler doubts any GPs have read the strategy but believes the publicity surrounding it will have done good in spawning other sources of information to re-educate people.
Shaquille Bayayi, community and partnerships services manager, South London and Maudsley NHS Foundation Trust
As the manager of Croydon’s memory services Bayayi has seen the strategy’s impact close up. “We are over two-thirds oversubscribed at the memory service,” he says. “That is a direct result of the dementia strategy.”
So capacity is an issue but, she says, a smoother referral procedure to specialist services is being worked on by Croydon to ease the backlog. Currently his teams have to go through primary care to gain access to hospital services such as CT scans, something they are hoping to bypass.
Bayayi feels the dementia strategy has been helpful in supporting the working relationships of the multi-agency teams, though there are issues over how far team members should perform similar roles or concentrate on their specialisms. “It has been a challenge in terms of how you translate how much care management or how much nursing a care manager does,” he says. “We have moved that on a great deal, which is down to the strategy.”
Barbara Dunk, occupational therapy consultant for assistive technology
Barbara Dunk says one of the biggest effects of the dementia strategy has been to push forward Croydon’s assistive techology centre’s work with developers, by raising the profile of dementia. It is now in talks with universities and research bodies.
She says the current level of technology works well in the community but in extra care housing and in-patient acute mental health wards there is some way to go.
“We’ve got some quite innovative projects in these places but the technology isn’t quite robust enough to meet the needs. We need funding to work with developers to develop bespoke services. In order to do that we stand more chance to go in with an academic partner.”
The experiences of carers in Croydon
The Alzheimer’s Society carers group in Croydon meets once a month for peer group support. They have had a mixed experience with services since the introduction of the strategy.
“With the NHS we’ve had every test going and we still haven’t got a diagnosis,” says one carer, Linda Hines. “Meanwhile, my husband is getting worse. We saw the consultant at the end of October. They don’t know what advice to give until they are certain what’s wrong. I think the first six months were OK, it’s just now that it’s really getting bad, we’re wondering should we go private because my husband is getting desperate.”
However, John Saulter, a carer for many years for his wife, has had a largely positive experience. “We’re lucky because everything is joined-up,” he says. “My wife was assessed and then I went on the carers course. Also, my wife goes to a day centre. Now I have to go into hospital for an operation on my hand, my wife has to go into respite and that has all been handled by her case manager.”
Some of those who have had a bad experience have sympathy for the professionals involved in providing services. Carer Pam Topley says of her own struggles to get support services: “My GP has told me I must push social services. I should have pushed but I know they are so short-staffed.”
The lack of capacity is something also experienced by Mary Lawlor who says her husband would really benefit from a place at a day centre, where he has been for trial periods previously, but is unable to get a spot. Lawlor has also noticed gaps in staff knowledge about dementia.
She says: “He went into the hospital for an unrelated condition and he had problems related to his operation – an infection set in – but because he had Alzheimer’s they assumed that was what was causing the symptoms. I had a great fight to get him seen to.”
Dementia in Croydon
● 1,000 new cases of dementia are presenting themselves to services in Croydon each year.
● 5,000 people are living with dementia in Croydon at any one time.
● 2,500 people have been referred to the memory service since 2004, about 1,900 of whom have been assessed.
● 50 new cases of dementia are presenting to the memory service each month.
➔ More about Croydon Memory Service
This article is published in the 11 February 2010 edition of Community Care under the headline “Putting the dementia strategy to work”