Health CommitteeWritten evidence from Stroke Association (LTC 79)

Key Points

Stroke is the third biggest killer and the largest dingle cause of severe adult disability in the UK. There are around 111,000 strokes and 20,000 Transient Ischaemic Attacks (TIA or “mini strokes”) in England a year and over 300,000 people are living with moderate to severe disability as a result of stroke.

Stroke is also one of the most expensive conditions, with direct care costs to the NHS of £3 billion every single year, within a wider economic cost of £8 billion.

Progress reports on stroke care from the National Audit Office (NAO) in 2010 and the Care Quality Commission (CQC) 2011 review of life after stroke support conclude that the improvements in acute care for stroke are not yet being matched in post-hospital and longer term support.

Stroke survivors and carers often describe their interactions with the health and social care system as confused and poorly coordinated.

There are significant problems with stroke survivors’ access to effective needs assessment and care planning.

All stroke survivors should be able to access a named person to co-ordinate their health and social care needs. This is currently not the case.

Survivors report access to therapies as too brief to enable best possible longer term recovery.

More work must be done for Cardiovascular Diseases to be managed as a single family of diseases to help improve care for people with multiple Cardiovascular morbidities.

1. The Burden of Cardiovascular Disease

1.1 Cardiovascular disease (CVD) is a common condition caused by atherosclerosis (furring or stiffening of the arteries). CVD (including conditions such as stroke, coronary heart disease, diabetes and chronic kidney disease) was responsible for nearly 30% of deaths in 2011—and is the largest cause of disability.

1.2 Major improvements have been made in the prevention and treatment of CVD over the last decade, with a 40% reduction in under 75 mortality rates for all CVD conditions and a 42% reduction in under 75 mortality for stroke.

1.3 Despite these improvements, future demographic shifts (in particular levels of obesity and an ageing population) threaten the gains that have been made. By 2022 the number of people at more than 20% risk of CVD could rise from 3.5 million in 2010 to 4.2 million.1

2. CVD Common Risk Factors and Multi-Morbidities

2.1 CVD in practice represents a single family of diseases linked by common risk factors.

2.2 Many people who have one CVD condition commonly suffer from another and the existence of one condition can create excess risk of developing others. For example patients with diabetes have a 25% excess risk rate for stroke and a 65% excess risk rate of heart failure.

2.3 Currently patients with multi CVD morbidities often receive care both in hospitals and the community from multiple different teams in a disjointed way.

2.4 The Department of Health’s Cardiovascular Disease Outcomes Strategy (March 2013) focuses on ways that CVD can be managed as a single family of diseases and considers how a more co-ordinated approach is needed to assessment, treatment and care to improve outcomes for patients.

3. Coordinated and Patient Centred Long Term Care for Stroke Survivors

3.1 People who have had a stroke and their carers need to be able to access a range of services after they have been transferred home. Many will need further community based rehabilitation, such as physiotherapy, speech and language therapy or occupational therapy. Many stroke survivors and carers also need broader support to help them manage life after stroke.

3.2 Progress reports on stroke care from the NAO in 20102 and the 2011 CQC review3 conclude that the improvements in acute care for stroke are not yet being matched in post-hospital and longer term support. The CQC also found wide levels of variation both between and within different areas in the accessibility and quality of care and support provided to people following transfer home. These findings were backed up by the Stroke Association’s 2012 Daily Life Survey of over 2,200 stroke survivors and carers.4

3.3 Stroke survivors and carers often describe their interactions with the health and social care system as confused and poorly coordinated. Typical problems include dealing with a range of different care professionals who have not shared information about them, appointments and visits that are poorly scheduled, patients feeling that they lack information and do not know who to contact for advice and support, as well as unnecessary repeat tests and failure to organise adequate community based support after patients leave hospital.

4. Assessment and Care Planning

4.1 Health and social care needs assessments are the gateway to stroke survivors getting the right support and services. These assessments should be then turned into a written care plan encompassing health, social and preventative care.

4.2 The Daily Life survey found that 39% of respondents had not been offered an assessment for their health and social care needs beyond hospital. Of those who had received an assessment of their needs, 60% of people had not received a care plan.

4.3 According to best practice stroke survivors should also be offered a review of their health social care and secondary prevention needs within six weeks of leaving hospital, six months on and then annually. This is because people’s condition and support needs can change.

4.4 The CQC review showed while most PCT areas have systems for reviews after 6 weeks, systems for reviews after this are in place in less than a quarter of areas. This finding was supported by the Daily Life Survey which found that in England 47% of respondents who had received a review had only had one review. The CQC also found that only 34% of areas had a framework for joint reviews of people’s health and social care needs.

4.5 Local projects have demonstrated that effective review processes can deliver a range of benefits, including reducing emergency readmissions, improving secondary prevention and providing better support for stroke survivors and their carers.

4.6 Following a successful pilot in partnership with Collaboration for Leadership in Applied Health Research and Care (CLAHRC) for Greater Manchester, 15 Stroke Association Information, Advice and Support (IAS) services across England are now already delivering six month post-stroke reviews.

4.7 It is also vital that carers for stroke survivors are made aware of their own right to an assessment of their needs. However, the Daily Life Survey found that 40% of respondents with a carer said their carer had not received and assessment because they were unaware they had a right to one.

4.8 Stroke survivors, along with all patients and carers with a long term condition, should also be offered the opportunity and relevant information to help them develop a personalised self-management plan which is integrated into the formal care planning process.

5. Support for Joined up Health and Social Care

5.1 Effective communication between health and social care teams is one of the most important aspects of stroke care.

5.2 When health and social care don’t work well together, the result is a worse experience and this was the situation described by 48% of English respondents to the Daily Life Survey.

5.3 Through the survey we heard of missed appointments, meetings cancelled at the last minute and administrative errors resulting in survivors not getting the support they needed. This left them and their families feeling as though they were seen purely as a series of health conditions rather than as people, keen to be supported to make their best possible recovery.

5.4 To help improve the experience people have and ensure that care plans are effectively implemented across health and social care, all stroke survivors should be able to access a named person to co-ordinate their health and social care needs. Each year, the Stroke Association provides such support to over 35,000 people affected by stroke, through our Communication and Advice, Information and Support services.

5.5 The CQC review found significant variation in the proportion of stroke survivors who are given access to a named coordinator and also variation in the services that they cover. Only 54% of PCT areas provided people with a single contact who looks across health, social and community services. In less than half of areas this support covered services such as community transport, access to leisure facilities or finding training and voluntary activities. These contacts could coordinate across different services (eg ensuring all appointments are on the same day) in only 40% of areas.

5.6 By widening access to stroke coordinators, not only can we achieve better outcomes for individuals but also begin to tackle the lack of understanding among health and social care professionals of stroke and its impact, and the problems this causes.

6. Early Supported Discharge for Stroke

6.1 Early Supported Discharge services provide a greater proportion of early rehabilitation for stroke survivors in the community rather than in hospital. Although not suitable for everyone it is estimated that around 40% of patients could benefit from ESD. Research has shown that ESD can achieve better outcomes for patients as well as relieving the demand on beds in stroke units and bring down costs for the hospitals running the service by around £500 per patient.5

6.2 Currently only 45% of stroke units offer ESD and only around 20% of stroke patients benefit from the service. However if this was raised to the optimal level of 40% there could be approximately 900 fewer cases of death and disability each year in England.6

7. Access to Therapies and Support Services

7.1 Survivors report access to therapies as too brief to enable best possible recoveries despite the National Stroke Strategy stating that stroke specialised rehabilitation should be available for as long as it continues to be of benefit. The 2011 CQC review found particular problems with availability of stroke specialist physiotherapy and significant delays in accessing speech and language therapy.

7.2 The emotional impact of stroke can be just as devastating as the physical effects. The Stroke Association’s Feeling Overwhelmed7 report found that 67% of stroke survivors had experienced anxiety and 59% felt depressed. Healthcare costs for people with long term conditions who also have depression are typically 45% higher than those without.8 Depression is also associated with a fourfold increase in the risk of cardiovascular disease.

7.3 Despite this need the CQC review found that less than 40% of PCT areas provided good access to psychological therapy or support from stroke councillors.

7.4 The Feeling Overwhelmed report also found that only two in ten stroke survivors were given information, advice and support on coping with the emotional aspects of stroke and almost two thirds agreed or strongly agreed that their emotional needs were not looked after as much as their physical needs.

7.5 Along with the need for specialist community based rehabilitation and therapies stroke survivors and carers also frequently talk of the need for more longer-term support for managing life after stroke.

7.6 The CQC found that people particularly valued the help and support provided by other people who had experience of stroke. Most PCTs reported that peer-support groups (usually run or supported by voluntary sector organisations such as the Stroke Association) were available in at least part of the area they cover, but only 60% reported they were available to everyone. Access to specific peer support for people with aphasia (communication disability following stroke), for people of working age or for people in care homes, was more limited

8. Access to Information

8.1 Stroke survivors, their carers and families need the right information, provided at the right time and in the right form to have the maximum chance of accessing support and living well following a stroke.

8.2 The CQC found that most of the information packs provided by PCTs to people when they are transferred home after a stroke were judged to have good information on reducing the risks of stroke, and on services for carers. However, only 40% of these packs contained good information on local services, and even fewer had good information on money or benefits and making complaints. Only 40% of areas gave people information on why and when services will end and 29% of social service departments were found to not give people information about how to ask for a re-assessment of their needs.

8.3 Direct payments and individual budgets have the potential to help some stroke survivors personalise their social care and other services to meet their needs. However, take up remains low and the CQC propose that this could be as a result of only 31% of PCT areas giving people who have had a stroke written information about them when they have left hospital.

8.4 The voluntary sector can also play an important role in providing expert and accessible information to stroke survivors, carers and professionals. The Stroke Association operates an information service, helpline and website and produces a comprehensive range of written materials in a variety of languages and formats.

8.5 A number of health and social care services around England make good use of voluntary sector resources and in some cases directly commission voluntary sector information and support services. However many people who have had a stroke and their carers are not being made aware of the free sources of advice available to them. The Daily Life Survey showed that nearly 30% of respondents in England were unaware of such free sources of care and support.

8.6 Many stroke survivors would also value better access to information about their own care and medical records. As discussed earlier too few stroke survivors are even given a copy of their own care plan let alone further information about their treatment and on-going care.

9. Involving Stroke Survivors to Help Design Services

9.1 We believe that by Involving stroke survivors, health and social care services will be better designed and avoid many of the pitfalls that are all too familiar to those that use them.

9.2 The CQC looked at the broader involvement of people who have had a stroke and their carers in decisions about the design and delivery of services. All PCT areas had carried out such work, linked to the implementation of the National Stroke Strategy, most often through surveys and focus groups. However, this work may not have always included some of the main groups affected by stroke. 9.3 For example, only 65% of areas have done specific involvement work with people with aphasia, only a third have targeted people who live alone, and only 17% have targeted people in care homes.

9.4 The CQC also found that some services could do more to encourage people to engage more in the day-to-day running of services. Only around a third of information packs explained how to complain about stroke services, or to make suggestions for how they could improve.

9 May 2013