Aftercare is the key to meeting the needs of stroke survivors, and is attracting the attention of commissioners.
Stroke is England's third biggest killer after heart disease and cancer. Each year it costs the NHS £2.8bn, as well as a further £2.4bn in informal care costs and £1.8bn in income lost to productivity and disability. Little wonder then that the government published a stroke strategy for England two years ago to improve prevention, acute care, rehabilitation and end-of-life care services, and boost public awareness.
Improvements are already evident in acute care with more people being treated for stroke as an emergency and more being cared for in specialist stroke units. However, there are concerns that after-stroke care has not made quite as much progress.
The strategy stated that only half of those who have a stroke receive rehabilitation to meet their needs in the first six months after they leave hospital, while one-third of stroke survivors will develop depression or communication difficulties. Seven of the 20 quality standards in the strategy cover aspects of aftercare, including rehabilitation, end-of-life care, return to work services and long-term care and support.
Aftercare is lagging behind for several reasons, says Chris Clark, director of operations at the Stroke Association. "Quite rightly, attention has gone into issues of awareness, emergency and acute care first. But although the strategy talked about long-term support in an encouraging way, the model it describes isn't easily commissioned. A commissioner at the acute end can see a clear line about what to do, but when people are discharged home it becomes more messy and complex. Stroke survivors talk about everything just stopping. We sometimes find that rehabilitation is spoken of as getting people out of hospital beds, rather than in terms of rebuilding lives."
Health and social care divide
The health and social care divide is another barrier, he says. "We often say primary care trusts are from Mars and social services from Venus. The language and mindsets are different. You either need systems that are integrated or you need someone working across systems to integrate them," he says.
The Stroke Association's Life after Stroke Services model, launched in October, "produces the long-term pathway that was missing from the strategy", says Clark. "The reaction has been extraordinary. We've been invited to meet commissioners all over the country. That shows how much they've been struggling."
The model includes the role of information, advice and support co-ordinator, employed by the Stroke Association and embedded in a hospital's multi-disciplinary team. These key workers are the single continuous presence, seeing a patient within two weeks of having a stroke and following them through the process to discharge and for a year after the stroke.
The final barrier, says Clark, is funding. Local authorities were given £15m a year from 2008-11 in ring-fenced funding to improve support to survivors in the community. "The vast majority have used it effectively in looking at local needs and meeting them but there are several who have not been in touch with us so we don't know what they've done. We want them to work more constructively and collaboratively."
Strong practice leads
Bromley Council, in south east London, aims to do just that. It is part of the South East London Cardiac and Stroke Network, one of 28 such regional networks, designed to improve the co-ordination of care.
Bromley has invested most of its ring-fenced money in two practice leads for stroke and support for families and carers, says Rebecca Jarvis, its strategic commissioning manager.
"The practice leads go on to the stroke unit in hospital, form relationships with staff, pick up cases and work with the patient through the discharge process so they don't feel abandoned when they get home. After the first review at six weeks they hand them over to the long-term community team," she says.
The ring-fenced funding has allowed local authorities to be more imaginative, says Elaine Yardley, the Association of Directors of Adult Social Services' lead on stroke. Much of the funding has gone into staffing and training, and she cites a survey published by Adass in January which revealed that 34 of the 84 councils that responded had stroke posts, including stroke co-ordinators and stroke social workers.
Yardley, adult services director at Nottingham Council, agrees with Clark that integration can, as ever, be a sticking point, with the different working terms and conditions in health and social care hampering the creation of joined-up posts. However, she adds: "People are finding ways round it, so that we have 'virtual' integration."
End of protected funding
But the fear is that all this good work could be undone when the ring-fenced funding ends in 2011. Yardley hopes some money will continue to be ring-fenced "because the job won't be done" otherwise.
"The danger of the grant going is that we will revert to type. I don't think we will lose the integration approach but perhaps [we would lose] some support from the third sector which would be a crying shame."
Jarvis agrees: "Bromley's support service for families and carers is commissioned from the Stroke Association. We will have to make a much harder business case for it [after 2011]."
With stroke being the biggest cause of adult disability, campaigners will hope that councils will see continued funding for stroke after care as a valuable investment to keep down long-term care costs.
Stroke Association Life After Stroke model
Aftercare tips for councils
● Establish early intervention strategies to minimise risk and cost of stroke.
● Map out your community's stroke care pathway and identify gaps.
● Commission services in partnership with NHS, stroke survivors and carers.
● Ensure information, advice and communication is accessible and person-centred.
● Commission stroke-specific training for the workforce.
Source: Elaine Yardley, Adass
A survivor's story: 'Aftercare brings you out of your shell'
Over Christmas week 2004, Christine Nash thought she had a hangover and went to bed to sleep it off. When her husband Simon couldn't wake her she was rushed to hospital where she remained in a coma for a week. At 38, Christine had suffered such a severe stroke that Simon was told to prepare for the worst.
When Christine came round she had difficulty talking and was told she would never walk again. She stayed on a rehab ward for five months supported by physiotherapy, occupational therapy, speech therapy, and independent living services.
"Aftercare is 100% important because you go into a shell and it brings you out," she says.
Christine is now able to walk and drive again, helping her regain some of her lost independence and self-esteem. But there has been a psychological, as well as a physical, toll and she no longer works full-time or socialises as much.
The biggest surprise was that she changed her mind about having a baby and the couple now have 19-month-old, Madeline.
Christine went through periods of feeling depressed and helpless. She joined a local long-term stroke support group run by the Stroke Association and continues to go once a week.
"The group makes a big difference," she says. "We have trips and do yoga, massage and computing, and you can chat about how you feel. It's helped me feel more confident."
What is a stroke?
A stroke is a blood clot or bleeding in the brain. It can leave lasting damage, affecting mobility, cognition, sight or communication. About 110,000 people in England have a stroke each year and a third will be left with a long-term disability, making it the biggest cause of adult disability.
This article is published in the 10 December issue of Community Care magazine under the heading Aftercare is not an afterthought