Health and Social Care Bill

Memorandum submitted by The Stroke Association (HS 60)

About The Stroke Association

The Stroke Association is the only UK wide charity solely concerned with combating stroke in people of all ages. We fund research into prevention, treatment and better methods of rehabilitation and help stroke survivors and their families directly through our website and national helpline.

We also provide a range of community services including support for people with communication difficulties as a result of stroke, family support, information services and welfare grants. In addition we campaign, educate and inform to increase knowledge of stroke and act as a voice for people affected by stroke.

Stroke Facts

Stroke is the third biggest killer and the largest single cause of severe adult disability in the UK. There are around 110,000 strokes and 20,000 Transient Ischaemic Attacks (TIA or "mini strokes") in England a year and roughly 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.

The Health and Social Care Bill and Stroke - Summary

1.1. The Stroke Association welcomes the Health and Social Care Bill’s aims of developing clinically led commissioning, creating greater patient involvement, enhancing the role of local government in health and focusing on outcomes for patients.

1.2. We do, however, have concerns that some of the structures being proposed may, at least in the short term and during the transition period, cause the pace of improvement in stroke care to be slowed.

1.3. The Government must give assurances that adequate measures will be taken to ensure that the momentum generated in improving stroke care is not lost during any period of NHS reorganisation.

1.4. In particular The Stroke Association is calling for:

· a commitment from the Government that under a reformed NHS, stroke will remain a national, long-term priority

· guarantees that the key elements of the National Stroke Strategy will be incorporated in any future guidance from the National Commissioning Board (NCB)

· a strengthening of the Bill to require both the NCB and GP consortia to involve and genuinely engage specialist health and social care professionals, patients and expert groups representing patients and carers in commissioning decision making

· assurances that the recent advances in the commissioning of high quality stroke services are not lost, and that GP consortia will be supported to acquire these skills

· continued existence and funding for coordinating organisations such as the NHS Stroke Improvement Programme and the stroke networks

· alleviation of concerns that a lack of a strategic level of planning and commissioning under the proposed system may compromise the pace of future progress in stroke care

· commitment to the continued funding of national auditing programmes for stroke

· development of more outcome indicators covering the full stroke care pathway

· consideration of an enhanced role for the voluntary sector in the proposed Health and Wellbeing Boards

· enhancement of the health scrutiny functions to be exercised within local authorities as proposed in the Bill

· review by NICE of the Stroke Quality Standard to cover community based rehabilitation, longer term support and social care services for stroke

Recent progress in improving stroke care

2. Years of neglect left the UK with the unenviable reputation of having some of the worst outcomes for stroke patients in Western Europe.

2.1. This issue was addressed by the previous Government with the launch of the National Stroke Strategy for England in December 2007 backed up with a commitment of £105 million in central funding for three years (2008-2011) to provide national support for its implementation.

2.3. By February 2010, the National Audit Office (NAO) in its report Progress in improving stroke care concluded that the actions taken to implement the Strategy had resulted in better outcomes including an increase in patients’ survival and improving value for money in stroke care.

2.4. However, both the recent NAO and Public Accounts Committee (PAC) reports also highlight areas of remaining serious concern. In particular they conclude that the improvements in acute care are not universal, and are not yet being matched in post-hospital and longer term support.

NHS Commissioning Board and national guidance for improving stroke care (Section 19)

3. The National Stroke Strategy published in 2007 has played a fundamental role in providing national guidance and direction on improving the quality of stroke care along the whole of the stroke care pathway.

3.1 Under the current NHS system its successful implementation has been driven by strong strategic leadership and direction at the national and regional level.

3.2. Stroke was made a tier 1 national priority in the three year NHS Operating Framework (2008-2011) ensuring that PCTs took action to implement the Stroke Strategy. 28 local Stroke Networks were developed, supported by the NHS Stroke Improvement Programme (SIP) at the national level, to coordinate the development of local services and promote good practice. Central funding of £105 million over three years 2008-2009 to 2010-11 has supported implementation of the Strategy, primarily in the form of additional funding to Strategic Health Authorities and ring fenced-grants to Local Authorities.

3.3. We welcome the Government’s recognition that the Strategy is only just over three years into a ten year programme and its commitment to further progress on its implementation including support for the Accelerated Stroke Improvement Programme.

3.4. We are, however, still unclear on how this will be achieved in the new NHS system as provided for in the Bill and how the mechanisms which have proved successful in the past few years will be replaced or enhanced.

3.5. We would like reassurances from the Government that under the proposals outlined in the Bill, stroke remains a national, long term priority and that it wishes to build on recent progress and see through the previous Government’s plans for the implementation of the National Stroke Strategy.

3.6. The proposed National Commissioning Board (NCB) will presumably have an important role in setting the direction for stroke services and must ensure that the key elements of the National Stroke Strategy are incorporated in any future guidance it issues on commissioning stroke services.

3.7. We would also recommend that the Bill should be strengthened so that the NCB is required to involve and genuinely engage specialist health and social care professionals, patients, the public and expert groups representing patients and carers in commissioning decision making.

GP commissioning consortia (Section 22)

4. We have concerns that some of the proposed GP consortia may have limited experience, understanding and knowledge of stroke and hence may be unaware of the full needs that stroke survivors have across the whole of the care pathway.

4.1. Although stroke is a common condition an individual GP may only see 2-3 new stroke patients a year. In addition a survey by the NAO in 2006 showed that only 16% of GPs had a special interest in stroke compared with 39% for Coronary Heart Disease.

4.2. The proposals to involve GPs more centrally in planning and commissioning stroke care could help to address the gaps in knowledge in this area. However, we seek assurances that the recent advances in the commissioning of high quality stroke services are not lost and that GP consortia, if introduced, will be supported to acquire these skills.

4.3. There must also be a greater recognition of the role that a wide range of health and social care professionals have in the delivery of stroke care and this should be reflected in a more multi disciplinary approach to commissioning than is outlined in the Bill.

4.4. Commissioning for stroke may need to take place at different levels and not necessarily at the level of individual GP consortia. It has been suggested that there could be as many as 500-600 GP consortia. If these do not act cooperatively there is a danger that variation in standards of services will occur, increasing the variations in services we already see. We must also ensure that any increased competition between providers which may result from the Bill will not impede networking and integrated care.

4.5. Regional support for integrating, coordinating and improving stroke care including commissioning for stroke has been greatly enhanced by the development of Stroke Networks, supported and partially funded by the Department of Health’s NHS Stroke Improvement Programme.

4.6. The Networks and the Stroke Improvement Programme have been fundamental in recent improvements working across organisational boundaries to spread best practice and bring together local NHS organisations, Local Authorities, clinicians, patients and other groups involved with stroke.

4.7. The Stroke Networks are in an ideal position to facilitate cooperation between the proposed GP consortia and help prevent inequalities in service provision developing. The greater the number of GP consortia, the more important it is to have a body like the stroke network to bring them together and encourage cooperation.

4.8. Whilst it is welcome that funding for the NHS Stroke Improvement Programme and the stroke networks has been secured for 2011-12 the Bill gives no room for optimism that they will continue beyond this point.

4.9. The refreshed Cancer Strategy (January 11) included the announcement that under a reorganised NHS the National Cancer Action Team and cancer networks might best offer their support to providers and commissioners through "a more flexible, social enterprise-based approach".

4.10. Cancer charities have voiced concerns about the impact that the removal of cancer networks will have on patient care and we would have similar concerns should the stroke networks cease to exist.

4.11. We would urge the Government to ensure that funding is allocated to the SIP and stroke networks during the full duration of any transition period to GP consortia and that consideration is given to maintaining SIP and the networks beyond this period.

4.12. As with the NCB we would also recommend that the Bill should be strengthened so that GP consortia are required to involve and genuinely engage specialist health and social care professionals, patients, the public and expert groups representing patients and carers in commissioning decision making.

Abolition of Strategic Health Authorities and PCTs (Section 28 & 29)

5.1. Reconfiguration of stroke services may be necessary to create the optimum number and location of hyper acute (offering access to 24/7 specialist stroke care) and acute services in any one geographical area, as well as ensuring that the ambulance service is fully integrated.

5.2. Some systems for providing effective and efficient rehabilitation and support (for example Early Supported Discharge, which provides more rehabilitation in the community rather than in hospital and is known to achieve better results for people and cut pressure on hospital beds) may also require planning and commissioning of services covering a relatively large population area.

5.3. The planning and execution of service change has so far been fulfilled by SHAs and supported by PCTs and Stroke Networks. For example In London the recent reorganisation of stroke care spearheaded by NHS London brought together all London PCTs to develop a more effective and efficient system of acute stroke care which is now recording some of the best results in Europe.

5.4. With the proposed abolition of SHAs, the development of a more fragmented system based on a larger number of GP consortia and uncertainty around the future of organisations such as the stroke networks, we have concerns that a lack of a strategic level of planning and commissioning may compromise the pace of future progress in improving stroke care.

5.5. If SHA’s and PCTs are to be abolished we would like consideration to be given to the proposed National Commissioning Board hosting, either nationally or regionally, a commissioning network for stroke.

5.6. We would also urge the Government to consider the need for the continued existence of coordinating organisations such as the SIP and stroke networks under the new NHS system.

Outcome measures and monitoring of progress

6. We welcome the new focus on outcomes and the development of the new NHS Outcomes Framework. However, we believe there is a continuing need for some clinically relevant structure and process measures. This would allow for the monitoring of progress in implementation of key quality markers from the National Stroke Strategy while also encouraging the continued improvement in high quality care.

6.1. We would therefore like to see the continued collection and publication of the vital signs measures on stroke units and TIAs.

6.2. We also believe a commitment to the continued funding of national audits such as the Royal College of Physicians Stroke Sentinel Audit and the new SINAP (Stroke Improvement National Audit Programme) is vital to aid collection of outcome data, enable professionals and patients to identify areas where progress is required and allow for clarity of performance to be established.

6.3. We would also like to see more outcome indicators developed covering the full care pathway in particular covering the post hospital period and long term support.

Increasing access to better post-hospital and longer term support

7. Post-hospital and longer term support in the community has traditionally been the weakest element of care for many stroke survivors and access to long term support services for stroke survivors and carers remains a postcode lottery.

7.1. In January the Care Quality Commission (CQC) published a review of community stroke services in every PCT area in England which reveals large and unacceptable variations in level of support available. Services in around half of all PCT areas were rated as either in the "least well performing" or "fair" categories and in need of major improvements.

7.2. The integration of health and social care is crucial to ensure that individual stroke survivors and their families get the full range of services and support that they need when they leave hospital.

7.3. At present this is not always the case and the CQC review found that only 34% of PCT areas have a framework for joint reviews of people’s health and social care needs across most or all of the PCT area.

7.4. The CQC also find evidence that in some areas social care services have not been fully engaged in the process of developing local stroke pathways and supporting the implementation of the National Stroke Strategy.

7.5. We would recommend that either the CQC in its new form or the NCB continue to play a role in reviewing the quality of longer term stroke services at a national and local level.

Increasing Local Authority involvement in health (Sections 175 – 178)

8. We welcome the Bill’s aim of increasing the role of Local Authorities in health and support the introduction of statutory Health and Well Being Boards and the introduction of a duty for local authorities and GP consortia to prepare joint strategic needs assessments and strategies. We hope that these measures will help improve the integration of health and social care and lead to better care for stroke survivors.

8.1. Voluntary sector organisations at a local level are well placed to offer expertise and advice on the needs of those patient groups they represent and may also be involved in the delivery of services for the local population.

8.2. We would therefore like to see the consideration of an enhanced role for the voluntary sector in the proposed Health and Wellbeing Boards.

8.3. The Bill provides greater flexibility for local authorities to carry out scrutiny of the local health service and local overview and scrutiny committees will not be mandatory. Local scrutiny of commissioning plans is a crucial aspect of democratic legitimacy. We share the concerns of other patient groups that the lack of detail in the Bill regarding best practice around the scrutiny function could result in potentially less scrutiny than in the current system.

8.4. We therefore recommend that the Bill requires the scrutiny function to be exercised by an independent structure within the local authority, led by locally elected representatives.

NICE Quality Standards for longer term stroke care (Section 218)

9. We welcome the proposed role of NICE in developing Quality Standards and the widening of its remit to cover standards for social care as outlined in the Bill. Stroke was one of the first Quality Standards developed (published June 2010) but the main focus of this was on acute care and early rehabilitation.

9.1. NICE will need to review the Standard to cover community based rehabilitation, longer term support and social care services for stroke.

9.3. We would also like clarification of the status of Quality Standards, how they will relate to guidance contained in the National Stroke Strategy and how they will apply in practice to stroke services.

February 2011