Coronary Heart Disease and Stroke: STRATEGY FOR SCOTLAND
6 Next Steps
DEVELOPMENT OF MANAGED CLINICAL NETWORKS
78. The Reference Group is acutely aware that MCNs cannot simply appear but will need a development process that is supported and resourced. NHS Boards will need to play an active role in identifying the key individuals to lead the development process and will need to ensure that they are supported. Developing an MCN requires a small team of people to drive the process forward and there is great merit in taking a project management approach so that things are dealt with in an ordered and structured way.
79. A clinician should be appointed to act as project leader: it is vital that a clinician rather than a manager is seen as the key individual leading the project. The project leader will need clinical credibility, diplomatic skills, leadership ability and determination. However, it is also clear from experience that the skills of a project manager can be enormously useful, particularly in the early stages of MCN development. The Dumfries & Galloway experience can be drawn on in making such an appointment. It is anticipated that the project manager would then be able to assume the role of Network Manager once the Network has been established. The manager and project leader will need secretarial and administrative support. NHS Boards may well wish to consider the potential benefits of establishing a Managed Clinical Network Office offering generic support to the development of MCNs in a variety of clinical disciplines, since the skills required are common to all.
80. The Task Force Report recommends that the generic lessons and management arrangements arrived at through the Dumfries & Galloway Pilot Project should underpin the development of all local MCNs. It is axiomatic however that local MCNs should be locally developed and their form suited to local circumstances. It would be inappropriate for all of them to have the same form, but it is clear that the work undertaken already in terms of MCN development should be used as a resource by other areas. As already indicated, the materials from the MCN pilot are all available on the MCN website ( www.show.scot.nhs.uk/mcn ), which is regularly updated, and new materials added as they are developed. The protocols, pathways, QA programme, and public involvement information should act as a starting point for others to develop to suit their circumstances. While the pilot project was undertaken in one small rural NHS Board area with no tertiary services, the principles involved, and the problems encountered, are common to all parts of NHS Scotland. The scale, complexity and type of relationships will vary across the service but the approach should be the same although the timescales will have to vary with complexity. LHCCs will have a crucial role to play in facilitating the development of MCNs for cardiac disease and stroke in their locality.
81. One of the core principles of MCN development is that the Network should produce robust audit data. All cardiac MCNs will therefore have a key role in the gathering of data. They must also develop the capacity to analyse those data so that the quality of services can be continually improved.
82. The Reference Group recommends that by April 2004 each NHS Board should have a local cardiac services Managed Clinical Network in operation.
83. The Reference Group has received many challenging comments on the proposed target in the Task Force Report of 1400 revascularisation procedures per million population, which is significantly less than that proposed by the National Service Framework for England (1500 per million). The Group believes that while such targets are useful for the purposes of planning, the overriding need is to ensure that all patients who may benefit from revascularisation are offered the appropriate treatment within a reasonable timeframe. The Scottish Cardiac Intervention Network will therefore be expected to update and implement existing protocols and guidelines for revascularisation, and to increase progressively the number of revascularisation procedures with the aim of reducing and ultimately eliminating the current unacceptable waiting lists for revascularisation. This is consistent with all the evidence about the benefits of early intervention, the approach of the National Waiting Times Unit and the establishment of the National Waiting Times Centre at Clydebank (formerly HCI).
84. The consultation process demonstrated strong support for the recommendation that MCNs for cardiac services should comprise a series of local MCNs linked to a cardiac intervention Network covering the whole of Scotland. The Reference Group also believes that Scotland is small enough to make the concept of a single intervention Network both practical and sensible. Cardiac surgeons and cardiologists already network effectively and have established links through organisations such as the Scottish Cardiac Society and the national databases for cardiac surgery and percutaneous coronary intervention. The Scottish Cardiac Intervention Network (SCIN) will therefore link the five existing cardiac surgery centres (Aberdeen, Edinburgh, Glasgow Royal Infirmary, Western Infirmary, Glasgow and National Waiting Times Centre) and the eleven hospitals with cardiac catheterisation facilities.
85. Planning and commissioning of cardiac interventions will continue to be organised on a regional basis, as is made clear in HDL(2002)10, which refers in Appendix 1 to 'specialised cardiology and cardiac' services as suitable for planning on the basis of a population of 1-2 million. There needs, therefore, to be clarity about the role which SCIN will play in that planning and commissioning process. It is helpful that the HDL acknowledges in section 4.1 the need for clear links between the Regional Planning Groups and Managed Clinical Networks. The HDL also recognises in section 4.2 that it is vital to engage the appropriate senior clinical staff in specific issues and task groups.
86. Regional Planning Groups will establish the volume of service provision needed across the region for each specific condition, based on advice from SCIN. Once that has been agreed, the cost of each Board's activity will be calculated, and the Board will then enter into a binding agreement on its contribution to the total cost of that regional service. That money is earmarked for the particular service concerned, and each Board will be able to monitor activity to make sure that the resources it has contributed are not used for any other purposes.
87. SCIN will be responsible for advising on the optimal way in which the Regional Planning Groups should be constituted in relation to cardiac interventions. SCIN itself will be represented on each of these Regional Planning Groups. Each Regional Planning Group will look to the Network as the source of its advice on the volume of revascularisation needed in its region for its population. That advice should be definitive, because of the protocols and guidelines for revascularisation which the Network will be developing (see paragraph 83). It will also be able to draw on advice from the local cardiac services Managed Clinical Networks, since the lead clinician or manager for each local MCN will attend planning meetings of SCIN.
88. Regional Planning Groups will have protocols to avoid inequity of approach within their region, and SCIN will act as the source of authoritative advice to the Regional Planning Group in the event of any disagreement about volume of activity or access to services. Through its membership of Regional Planning Groups, SCIN will make a strong contribution to the arrangements for ensuring that funds earmarked for interventions are in fact applied to that purpose.
89. It may be helpful to take Implantable Cardioverter Defibrillators (ICDs) as an example of the benefits which the new arrangements could bring. SCIN would agree the indications for ICDs. Patients would be treated if they met the criteria, and SCIN would have to make an assessment of the number of people likely to require an ICD in any given year. That calculation would form part of the process of identifying the resources which each Board would transfer to the Board acting as regional service provider. If the regional planning mechanism works effectively, it should also assist the achievement of the higher rate of implantation discussed in paragraph 96 below.
90. A Health Department Letter will be sent to NHSScotland when the Strategy is published, amongst other things setting out these arrangements.
91. It follows from what has been said about the role of the Scottish Cardiac Intervention Network that the group responsible for managing the Network should also be represented on the Department's national advisory committee on CHD issues. This will enable the Network to alert the Department readily to any concerns it has about the operation of the regional planning arrangements for CHD and any other aspects of CHD service provision.
92. SCIN should take responsibility for the delivery of cardiac surgery, percutaneous coronary intervention (but not diagnostic coronary angiography), all other therapeutic cardiac interventions, including balloon valvuloplasty and device closure, specialist electrophysiology (EP) services (diagnostic EP studies, RF ablation, implantation of ICDs but not simple pacemakers) and the proposal for a National Heart Failure Centre. SCIN will be expected to identify priorities for new investment and promote a quality assurance programme by:
continuous audit supported by the national CHD database;
the development of agreed protocols and guidelines; and
investigating anomalies in and promoting appropriate revascularisation rates and equity of access.
A detailed description of the arrangements for the Scottish Cardiac Intervention Network is set out in Appendix 3.
93. The Reference Group recognises that the significance and importance of this development mean that it has to be planned thoroughly. The CHD component of the Reference Group should therefore be re-constituted as the Project Group for SCIN, with the Chairman of the Reference Group becoming Chair of the Project Group. The development phase would last a year from the time of publication of the Strategy, and there might then be a short period during which the Network would operate in shadow form. The Network would therefore become fully operational in January 2004. Until then, the Project Group would act as the Department's source of authoritative advice on policy in relation to CHD. Its members would therefore need to reflect the full spectrum of CHD interests.
94. The Reference Group recommends that the CHD component of the Reference Group should be re-constituted as a Project Group, with specific responsibility for drawing up detailed plans for developing the Scottish Cardiac Intervention Network, including a timetable, costings for the development process and the appointment, by October 2003, of a clinical lead with clinical and managerial credibility. The Project Group would also have a role in educating NHSScotland about the function of SCIN.
ADDITIONAL RECOMMENDATIONS ARISING FROM THE CONSULTATION PROCESS
Automatic External Defibrillators
95. The Task Force Report discusses the issues relating to the provision of automatic external defibrillators (AEDs) in public places and recommends that it may be appropriate to pilot the introduction of AEDs in parts of Scotland when outcome data are available from a Department of Health initiative in England. The Reference Group has received a number of persuasive comments suggesting that investing in an enhanced first responder defibrillation scheme is likely to provide a more cost-effective way of using NHS resources to improve survival from cardiac arrest in the community. The Group is not therefore in favour of commissioning AEDs on a national basis at this stage. However, the Group recognises that AEDs are already coming on stream in some areas as a result of local initiatives, based on local assessments of cost- effectiveness. The SCIN sub-group on CHD policy acting as the national advisory committee on CHD should keep the emerging evidence under review.
Implantable Cardioverter Defibrillators
96. The Task Force Report makes no mention of the appropriate management of survivors of out-of-hospital cardiac arrest. Approximately 50% of these patients are at high risk of sudden death due to recurrent ventricular tachycardia or ventricular fibrillation and may benefit from an implantable cardioverter defibrillator (ICD). These devices are expensive; however, several prospective randomised controlled trials, and a meta-analysis, among selected patients at high risk of sudden death, have shown that ICDs are superior to conventional anti-arrhythmic therapy (28% reduction in all-cause mortality). As a result of these data the National Institute for Clinical Excellence (NICE) has endorsed the use of ICDs in certain groups of patients at high risk of sudden arrhythmic death (NICE technology appraisal guidance no. 11) and has estimated that an implant rate of 50 devices per million population is appropriate for England and Wales. At present only two centres in Scotland implant ICDs with an overall implant rate of approximately 13 per million.
97. The Reference Group believes that an implant rate of at least 50 per million would be appropriate for Scotland and therefore recommends that:
developing and maintaining guidelines and protocols, based on the NICE guidelines and the evidence which has become available subsequently, for the use of these and similar devices;
identifying sufficient resources to increase the implant rate and the number of implanting centres; and
monitoring quality control in conjunction with the Quality Standards Board for Health in Scotland (which has recently subsumed CSBS).
98. The Reference Group recognises the importance of cardiac rehabilitation as an integral part of the patient's complete journey of care. The overarching theme of supporting patients whether they have angina, heart failure, or are recovering from a heart attack or revascularisation was endorsed by the Scottish Needs Assessment Programme (SNAP) report and SIGN Guideline 57 (January 2002). The Guideline outlined a structured menu-based approach to rehabilitation that included medical advice, psychological support and behavioural risk factor modification, e.g. smoking cessation and exercise. These elements will be supported as part of the overall framework of primary and secondary prevention provided within local cardiac services MCNs. 'Have a Heart Paisley' has supported the provision of local cardiac rehabilitation services according to the SNAP and SIGN principles, and the continuing evaluation of this programme will provide useful lessons for other centres.
99. The Reference Group therefore recommends that:
in devising their cardiac rehabilitation programmes, MCNs should make particular attempts to ensure the participation of excluded groups, such as women, older patients and those from areas of socio-economic deprivation; and
lessons learned from the evaluation of 'Have a Heart Paisley' should be applied when implementing cardiac rehabilitation programmes in other areas.
Palliative Care for End-Stage Heart Failure
100. The Task Force Report pointed to the importance of making sure that those with end-stage heart failure had access to palliative care. This is in keeping with the Executive's policy that palliative care should be available to anyone suffering from a progressive, incurable condition. The Scottish Partnership for Palliative Care has established a working group to consider this issue and to advise on the practicalities of taking the work forward. The outcome of this initiative should be shared with local cardiac services MCNs as well as with emerging palliative care MCNs.
101. The Chief Scientist Office (CSO) is establishing 'portfolios' as a means of ensuring the strategic management of research in priority areas. Each portfolio will have a 'steering committee' comprising senior clinicians and researchers, to help CSO to identify gaps and opportunities which it needs to address. This process will link with work being conducted at UK level by the Cardiovascular Research Funders' Forum, of which CSO is a member. In the short term, focus groups are being set up to steer this initiative by identifying research priorities that will help inform the current revision of the CSO Research Strategy. Current research will be reviewed within the context of work funded by CSO and others, as well as needs identified through the CHD/Stroke Strategy. To inform the prioritisation process, links will be established between these focus groups and the national advisory arrangements for CHD and stroke which are being set up under this Strategy.
Current Provision of Stroke Care in Scotland
102. In the last few years a number of documents have been produced in Scotland (SIGN Guidelines, Royal College of Physicians of Edinburgh Consensus Conference Statements 1998 and 2000, Chest Heart and Stroke Scotland - a strategy document) and England (the Intercollegiate Stroke Guidelines 2000, The National Service Framework for Older People 2000) which provide the best evidence-based guidance on how stroke services should be organised and how patients should be treated. Over a similar period, several surveys have indicated that current service provision falls well short of these ideals (National Audit of Stroke Service in 1998, a survey of Radiology departments in Scotland, the Scottish Vascular Audit Group, and the British Association of Stroke Physicians' 'benchmarking survey' five hospital study).
103. The majority of stroke patients will require urgent admission to hospital to receive an accurate diagnosis, medical and nursing care and appropriate treatment, including rehabilitation. Some patients with transient ischaemic attacks (TIA) and minor strokes may not require immediate admission if they can have prompt access to outpatient services where the diagnosis can be confirmed and treatment to prevent further vascular events can be started.
104. There are major deficiencies in the services which exist, in the number and training of health professionals and in the delivery of evidence-based treatments. Appendix 4 shows, in tabular form, the availability of stroke unit beds and imaging equipment in the hospitals which regularly admit patients with acute stroke.
Future Requirements for Stroke Unit Care
105. As the Task Force Report acknowledged, organised stroke unit care has been shown, in randomised controlled trials and systematic reviews, to improve survival and reduce functional dependence in patients admitted to hospital with an acute stroke. Essential components of such services include:
prompt access to brain imaging and other diagnostic tests to allow an early and accurate diagnosis;
physicians experienced in stroke medicine; and
a stroke unit staffed by a multidisciplinary team (comprising at least a physiotherapist, occupational therapist, speech and language therapist, and social worker and nurses with appropriate training in the care of stroke patients).
106. Many patients, even in hospitals where stroke units have been established, do not access stroke unit care during their hospital admission, or experience delays in accessing the unit because there are insufficient beds. Also, in many units there are shortages of appropriately trained staff.
107. There is an urgent need to ensure that all hospitals in Scotland which admit patients with an acute stroke can provide immediate stroke unit care. This must be arranged within 24 hours of admission if direct admission to the unit is not feasible. Stroke units should be able to provide several months of inpatient rehabilitation for patients who require this before being discharged home. Delayed discharges are an important and avoidable reason why many stroke patients do not access stroke unit care. The provision of organised and specialised multidisciplinary stroke rehabilitation in the community can significantly reduce patients' length of hospital stay and offers more choice to patients and their families.
108. Each year, about 10,000 patients are admitted to Scottish hospitals with a stroke. Currently there are between 650 and 700 beds designated for stroke care in Scottish hospitals ( Appendix 4). The balance between acute and rehabilitation stroke beds will vary depending on local circumstances. The mean length of stay is about 36 days. If one assumes a bed occupancy of about 90%, then on average about 60 to 70% of patients might access a stroke unit bed. Assuming that the length of stay remains unchanged, then there is a requirement to increase to about 1,000 the number of designated stroke beds in Scotland. This estimate would of course be reduced through tackling the problem of delayed discharges.
109. The stroke unit beds are not distributed in a way which ensures equal access in all areas. In some NHS Boards (Borders, Highland), there is no provision, while in others there is adequate provision. In the majority of areas there are too few designated beds to allow all stroke patients early access to a specialist bed. Some hospitals have designated beds but lack key components of stroke unit care.
110. The Scottish Borders Stroke Study (SBSS) has recently been completed. This study was the first stroke and TIA incidence study to have been undertaken in Scotland. It was a true population-based study involving all residents of the Scottish Borders, which covers 1800 square miles of Scotland south of Edinburgh. As an extension of this work, the SBSS compared incidence and length of stay with bed occupancy and has generated a bed-occupancy model to estimate the number of stroke beds. Along with an estimate of first-ever strokes and admissions, this can be used to determine the stroke bed requirements for each NHS Board. This should allow equity of stroke provision across Scotland. These models are currently being used to inform the works of the Clinical Standards Board's Stroke Project Group. The Reference Group recommends that stroke MCNs should use the bed model to calculate the number of beds required in their area.
Services for Patients Not Requiring Admission
111. To avoid the need to admit all patients with TIAs and minor strokes to hospital, while still providing adequate care, all such patients should, as recommended in the CHD/Stroke Task Force Report, have access to a 'one-stop' neurovascular clinic within 7 days, and ideally 72 hours, of their event. Early assessment and treatment allow more accurate diagnosis, reduce the costs of investigation and maximise the effectiveness of secondary prevention. For such services to be effective there must be adequate funding of antithrombotic, blood pressure lowering, and cholesterol-lowering drugs as well as services to help patients lead a more healthy lifestyle. In addition, for the small proportion of patients who would benefit from treatment of carotid stenosis, prompt access to a suitably trained and experienced vascular surgeon will minimise the risk of recurrent stroke (SIGN Guideline 14, Management of patients with Stroke II: Management of Carotid Stenosis and Carotid Endarterectomy, May 1997).
Provision of CT Scans
112. In a small proportion of patients with apparent stroke, an emergency CT brain scan (i.e. one performed within minutes of arrival) is required to clarify the diagnosis and to guide immediate treatment. In the remainder of patients, a routine CT brain scan performed within no more than 48 hours will confirm the diagnosis and accurately distinguish a haemorrhagic from an ischaemic stroke. For the vast majority of patients with ischaemic stroke, this allows appropriate early treatment with antithrombotic drugs, which have been shown to improve long-term outcome. Delaying the CT scan further may lead the patient to receive inappropriate treatment for both stroke and non-stroke conditions such as brain tumours, and may reduce the reliability of CT to distinguish haemorrhage from ischaemic infarction so that an MRI scan would then be required. These are far less readily available, are more expensive and less well tolerated by stroke patients. Current delays would be avoided by the appropriate prioritisation of CT scanning for stroke, and the identification of daily slots into which stroke patients, from the stroke unit or one stop neurovascular clinic, could be accommodated. A recent study has suggested that immediate CT brain scanning offers the most cost-effective imaging strategy for patients admitted to hospitals with a suspected stroke.
113. The Reference Group therefore recommends that by June 2003, Trusts admitting patients who have had an acute stroke will ensure that their radiology departments provide the amount of dedicated time each day needed to ensure access to CT brain imaging for stroke patients in order to achieve the target times identified in the SIGN Guidelines.
Long-term Follow Up
114. Following a stroke, patients have a high risk of recurrence. Efforts to reduce this risk need to be monitored for the remainder of their lives. In addition many patients and their families experience a wide range of medical, social and financial problems after they have been discharged from the stroke unit or clinic. They require long-term follow up and support to identify and satisfactorily deal with these problems. Although this need has been identified, many stroke services are currently unable to provide longer-term follow up. Hospitals, primary care and social services need to jointly develop a strategy to provide the follow up, support and treatments that are required to maximise the patients' and families' quality of life. Stroke family care workers, specialist health visitors or practice nurses and nurse and therapy staff provide this service in some areas. Multidisciplinary outpatient clinics have also been developed in some places to deliver this service.
115. The Reference Group strongly believes that many of the problems identified in current stroke service delivery, not least issues of equity of access, will best be tackled through the development of local MCNs. As indicated earlier in this Strategy, the Group also believes that the establishment of a national advisory committee on stroke will be necessary to ensure implementation. A suggested remit and membership is attached at Appendix 5.
116. The Reference Group therefore recommends that the stroke component of the Reference Group should be re-constituted as the National Advisory Committee on Stroke by October 2002.
117. The Reference Group also recommends that by April 2004 each NHS Board should have a stroke Managed Clinical Network in operation.