Better Heart Disease and Stroke Care Action Plan

4: SERVICES FOR HEART DISEASE

4.1 People with heart disease and their families understandably want their healthcare needs to be met as locally as possible. Better Health, Better Care emphasises that resources should be directed to supporting local front-line services wherever possible and that these local services should be linked by technology to specialist centres to provide additional support and information where this is required.

4.2 People with heart disease also want to avoid admission to hospital wherever possible. Under HEAT Target T6 NHS Boards have set trajectories over the three years from 2008-09 for the reduction in hospital admissions of people with a primary diagnosis of a number of conditions, including CHD.

4.3 In broad terms, the description of services in the rest of this chapter begins with those delivered locally, then regionally and finally at national level. Where a service is provided at more than one level, the description of it is continuous.

Waiting Times

4.4 People want their investigations and treatment to be undertaken as rapidly as possible. Since December 2004, the Scottish Government's waiting time standards for CHD have meant that patients wait no longer than eight weeks between review by a heart specialist to diagnostic angiography, and no more than 18 weeks between angiography and cardiac revascularisation (either PCI or surgery) if required.

4.5 Since December 2007 there has been a maximum waiting time of 16 weeks from referral by GP to a rapid access chest pain clinic ( RACPC), through to treatment. From 2011 there will be a maximum waiting time of 18 weeks from referral to treatment for all conditions, including cardiac. To begin the move towards achieving this new target, the maximum routine waiting time for cardiac outpatient clinics was set at 18 weeks in December 2007, reducing to 15 weeks or less at March 2009.

New Definition of Acute Myocardial Infarctions/Acute Coronary Syndromes

4.6 In recent years, a number of sensitive and specific diagnostic tests (biomarkers) have helped clinicians refine the way in which acute myocardial infarction ( AMI) is diagnosed and treated. Increasingly, the term MI is now being replaced with Acute Coronary Syndrome ( ACS). These tests of biomarker levels measure the amounts of troponin and creatinine kinase released into the blood when part of the heart muscle is damaged. A diagnosis of myocardial infarction has a range of potentially significant implications for patients and their families with respect to psychological effects, life insurance, careers and lifestyle. A more precise diagnosis, and recognition that even minor elevation in troponin is associated with poorer prognosis, means however that more appropriate initial and long term treatment can be offered.

Action:

Each cardiac MCN needs to ensure the following:

• Patient groups and charities are informed of the national consensus on the new definition of AMI/ ACS, particularly in areas where this represents a significant change in the diagnosis rates of AMI/ ACS;
• All clinical staff involved in caring for CHD patients understand the rationale for the change and promote it within their own hospital, participating in the education of colleagues outwith the specialist cardiology environment;
• Cardiac rehabilitation departments are aware of the change of definition and make sure service provision matches the likely increase in those diagnosed with non- ST elevation MI ( NSTEMI);
• Hospital coding departments are informed of the change of definition;
• GPs are made aware that this may result in an apparent rise in the number of patients coded as having MI and that this could have an impact on their CHD registers; and
• Hospital biochemistry departments are asked to review their troponin assay to ensure a standardised approach across Scotland.

Action:

The National Advisory Committee on Heart Disease should monitor progress to ensure consistency of approach to ACS diagnosis and treatment across Scotland.

Recommended Terms and Coding for Myocardial Infarction and other Acute Coronary Syndromes

ICD10	READ code	ICD10 description	Discharge letter description
I200	G3111	Unstable angina	unstable angina (only use with negative troponin)
I210	G301z	Acute transmural MI of anterior wall	anterior STEMI
I211	G308	Acute transmural MI of inferior wall	inferior STEMI
I212	G304 posterior, G305 lateral,	Acute transmural myocardial infarction of other sites	posterior or lateral wall STEMI
I213	G30X	Acute transmural myocardial infarction of unspecified site	STEMI (site unspecified)
I214	G307	Acute subendocardial myocardial infarction	NSTEMI (any elevation of troponin with features of cardiac ischaemia without electrocardiogram ST elevation)
I240	G3110	Coronary thrombosis not resulting in myocardial infarction	Aborted MI
R074	R065z	Chest pain - unspecified.	Chest pain - unspecified

4.7 The Scottish Ambulance Service has looked into near patient testing in the recent past, and consulted senior clinicians. It was recognised that troponin testing equipment was currently designed to be used in fixed clinical settings, such as community hospitals, health centres and GP surgeries. The Scottish Ambulance Service will continue to monitor the evolution of near patient testing equipment to determine if there comes a point at which significant patient benefit may be achieved by adding this facility to front-line ambulances.

Optimal Reperfusion for ST Elevation Acute Coronary Syndrome ( ACS)

4.8SIGN Guideline 93 recommends that, where possible, patients with ST elevation ACS (also known as ST segment Elevation Myocardial Infarction or STEMI) should be treated immediately with primary percutaneous coronary intervention (primary PCI). This type of heart attack is caused by prolonged blockage of the blood supplied to the heart through the coronary arteries. Because STEMI affects large areas of the heart muscle, it causes changes on the ECG (electrocardiogram) as well as in levels of key chemical markers in the blood. Where patients are unlikely to receive primary PCI within 90 minutes of diagnosis, for example for reasons of geography, they should receive immediate thrombolytic therapy. The aim of optimal reperfusion therapy ( ORT) for all patients requires close working between cardiologists, in partnership with the Scottish Ambulance Service and colleagues in Accident & Emergency medicine.

4.9 In summer 2006 NHS Lothian and the South East Division of the Scottish Ambulance Service received funding from the Chief Scientist Office for a feasibility study of a hybrid programme of pre-hospital thrombolysis and primary PCI in Lothian. The final report of the study was submitted in April 2008 and includes data analysis on the running of a 24/7 365-day-a-year primary PCI service.

4.10 The study demonstrated very positive results, including apparent reductions in mortality and length of hospital stay. Primary PCI is however only one of three components of the pragmatic approach needed to deliver optimal reperfusion to all eligible patients. The other elements are pre-hospital and in-hospital thrombolysis. All three elements must be delivered equally well to ensure equity of access to ORT. Regional Planning Groups are now considering the results of the Lothian pilot and the implications for roll-out of this service across the country.

4.11 Following approval by the West of Scotland Regional Planning Group, an enhanced reperfusion service was introduced across the West of Scotland in 2008. Patients with ST elevation ACS are brought by the Scottish Ambulance Service directly to either the Golden Jubilee National Hospital or Hairmyres Hospital for primary PCI if they are within the agreed travel time from one of the two intervention centres. Those outwith the agreed travel time receive thrombolysis (where appropriate) prior to being brought to the intervention centre for follow-up care.

4.12 The South-east and Tayside Regional Cardiac Planning Group is working to a phased implementation of an ORT service. The Primary PCI centre at the Royal Infirmary of Edinburgh is currently covering those patients within the agreed travel time in Lothian and Forth Valley. It is developing plans to roll the service out to Borders and Fife later in 2009, and is working with NHS Tayside to synchronise the development of services for residents of North Fife who are within the agreed travel time. The model reflects the approach adopted in the west of Scotland.

4.13 Comments from the North of Scotland Planning Group indicate that the major limitation to the optimal reperfusion service will relate to ambulance and cardiac catheterisation laboratory resources. The intention currently is to deliver Primary PCI at all three centres (Aberdeen Royal Infirmary, Raigmore Hospital, Inverness, and Ninewells Hospital, Dundee) within working hours. Outwith working hours, patients will be given thrombolysis and then taken to Aberdeen Royal Infirmary for angioplasty.

4.14 The recommendations in SIGN 93, addressing the whole patient journey in the emergency setting, have been incorporated into the draft NHS Quality Improvement Scotland ( NHSQIS) clinical standards on the prevention and treatment of CHD developed by a multi-disciplinary project group involving representatives from all the cardiac Managed Clinical Networks ( MCNs), including patient representatives. The draft standard is that patients with a suspected heart attack have an electrocardiogram ( ECG) performed in the pre-hospital setting by a trained member of staff within 30 minutes of the call for help. This 30-minute window for diagnosis, which includes the ambulance response time and the time taken to perform and interpret an ECG, is then added to the previously quoted 90 minutes (diagnostic ECG to balloon time for Primary PCI) and 30 minutes (diagnostic ECG to needle time for thrombolysis) to give the following standards:

• the 'call to balloon' time is 120 minutes or less for patients with ST elevation ACS treated with primary PCI; and
• the 'call to needle' time is 60 minutes or less for patients with ST elevation ACS treated with thrombolysis.

4.15 For patients presenting directly to hospital, the following draft standards were developed by the NHSQIS project group:

• the 'diagnostic ECG to balloon' time is 90 minutes or less for patients presenting directly to hospital with ST elevation ACS treated with primary PCI;
• the 'diagnostic ECG to needle' time is 30 minutes or less for patients presenting directly to hospital with ST elevation ACS treated with thrombolysis; and
• patients with suspected ACS, with no ST elevation identified by ECG, are transported immediately to hospital for further assessment where trained staff are available to manage acute chest pain.

4.16 The final CHD standards document may be aligned further with international standards over the course of the next year.

4.17 Responses to the consultation on the revision of this Action Plan suggested that pre-hospital thrombolysis is under-used in some rural areas, and that front-line staff need more training on current treatments and the management of ACS patients. There is a role here for the Scottish Ambulance Service ( SAS), which is responsible for the administration of thrombolytic therapy in the pre-hospital setting.

Action:

The SAS should review current arrangements for delivery of pre-hospital thrombolysis across Scotland, particularly in rural areas, including assessment of staff training needs, and submit a report to the National Advisory Committee on Heart Disease by March 2010.

4.18 Any ORT plan needs to have a robust decision support team in place which is clearly identifiable to paramedics, NHS 24 and others. Whether this should be at each centre offering primary PCI or whether it should be organised at regional or national level is an issue which needs to be debated with all the key agencies, including the Scottish Centre for Telehealth.

4.19 An inter-regional cardiac planning group met regularly until the beginning of 2008. This forum facilitated discussion and planning across the three regions. As we identify new diagnostic tools and interventions and receive new evidence which has the potential to impact on current services, this regular forum is essential, to give a pan-Scotland perspective.

Action:

The cardiac group which brought together representatives of the three Regional Planning Groups to provide a pan-Scotland perspective should be re-convened as a sub-group of the National Advisory Committee on Heart Disease, to promote consistency of approach across Scotland, for example in relation to ORT, through inter-regional discussion and planning.

Defibrillators in public places

4.20 Delays in performing defibrillation can be reduced appreciably if those in the vicinity of a sudden cardiac arrest outside hospital can use an automated external defibrillator ( AED) before the arrival of the emergency medical services. The most recent evidence on public access defibrillation is set out in A national scheme for public access defibrillation in England and Wales: Early results, Resuscitation (2008), doi: 10.1016/j.resuscitation.2008.03.226.

4.21AEDs operated by lay persons are used in England and Wales in a National Defibrillator Programme promoting public access defibrillation ( PAD). Two strategies are involved: static AEDs installed permanently in busy public places operated by those working nearby; and mobile AEDs operated by community first responders who travel to the casualty. The conclusions in the article are based on 1,530 resuscitation attempts since the programme began. The key benefit of these strategies is an improved chance of survival for people suffering a cardiac arrest.

4.22 According to the report, the on-site (static) strategy has now proved to be very effective at places where there is an appreciable risk of cardiac arrest occurring, such as larger railway stations and airports. The level of such risk that would make implementation mandatory remains to be defined, nor is it clear exactly what level of 'footfall' should be used to determine the locations for static AEDs. For the on-site strategy to be effective, there must be a considerable number of AEDs in the vulnerable area. Current international guidelines support the establishment of AED programmes when:

• the frequency of cardiac arrest means there is a reasonable probability of an AED being used at least one in two years;
• the time from call-out of the conventional ambulance service to delivery of a shock cannot reliably be achieved within five minutes; and
• the time from collapse until the on-site AED can be deployed is less than five minutes.

4.23 The results for mobile AEDs were appreciably less good, and were particularly poor in the patients who arrested at home, the commonest place for cardiac arrests to occur. The report suggests, however, that the results achieved by community first responders should be regarded as a promising start to a strategy at an early stage of development.

4.24 The relative cost-effectiveness of the two approaches has not been defined. There has been no formal cost-effectiveness study in the UK, but a rough cost analysis suggests a figure of roughly £20,000 per life saved.

Action:

NHS Boards should seek advice from their cardiac MCNs in considering the introduction of both approaches to PAD, in particular whether there are suitable locations in their area in which the static approach might be beneficial. If recommended by the MCNs, NHS Boards should introduce these by the end of March 2010.

Cardiac Rehabilitation

4.25 Comprehensive cardiac rehabilitation ( CR) consists of exercise training together with education and psychological support. The aim of these interventions is to help patients return to normal living and encourage them to make lifestyle changes to prevent further cardiac events. There is a wealth of evidence, including from 'Have a Heart Paisley', demonstrating the clinical and cost effectiveness of cardiac rehabilitation. It is an inexpensive treatment that saves lives.

4.26 Until recently, only those who had had a myocardial infarction or cardiac intervention ( PCI or bypass graft) had access to cardiac rehabilitation services. It is now clear that people who undergo other 'step changes' in their conditions, for example unstable angina, new onset angina or the development of chronic heart failure, will also benefit from cardiac rehabilitation. The recent redefinition of myocardial infarction (see paragraph 4.6) will result in a significant increase in the number of those who will be formally eligible for cardiac rehabilitation in the future. The proposed widening of eligibility for CR is also detailed in the draft NHSQIS clinical standards for CHD.

4.27 The Scottish Campaign for Cardiac Rehabilitation, mounted by the British Heart Foundation ( BHF) Scotland and Chest, Heart & Stroke Scotland, highlights figures from ISD suggesting that up to 60% of people who have had a heart attack or cardiac intervention receive cardiac rehabilitation. The campaign suggests that this could be increased to an 80% participation rate if services were tailored to suit each individual's needs and drew in under-represented groups such as those from ethnic minorities, and those in remote and rural and/or deprived communities. ISD figures also demonstrate that only 3% of people with angina and less than one per cent of those with heart failure received cardiac rehabilitation in Scotland in 2007.

4.28 The CR campaign has the following objectives:

• every heart patient who is suitable and wishes to take part is given access to a rehabilitation programme;
• patients are offered alternative models, such as home-based rehabilitation, if they prefer not to take part in community programme or attend hospital;
• programmes should meet the needs of carers and under-represented groups such as those in deprived or remote/rural communities;
• each programme should meet the minimum standards set out by British Association of Cardiac Rehabilitation and the SIGN Guideline on Cardiac Rehabilitation; and
• provision must be monitored through a national audit of cardiac rehabilitation.

4.29 It is clear that NHSScotland will need to increase capacity significantly, particularly in terms of staffing, for cardiac rehabilitation to be available to all eligible patients who wish to participate and benefit from resulting decrease in morbidity and premature mortality. The challenge for NHS Boards will be to fund CR, in line with the NHSQIS draft CHD clinical standards, into the future on a sustainable basis. The specific rehabilitation needs of those with heart failure also need to be borne in mind.

4.30 In addition, CR services will need to ensure that the introduction of optimal reperfusion services, with people experiencing shorter hospital stays and many receiving treatment outwith their home NHS Board, does not lead to a reduction in referrals to CR. The West of Scotland model seeks to address this by providing follow-up care after primary PCI within District General Hospitals ( DGHs), to allow people to access CR and other local services.

4.31 The SEAT Cardiac Rehabilitation Group, a sub group of the Regional Cardiac Planning Group, is working to ensure that referral processes between the tertiary centre and district general hospitals will allow all eligible patients to receive CR and other appropriate services locally. The model adopted reflects that outlined in the West of Scotland.

Action:

NHS Boards should, through their cardiac MCNs, undertake a needs assessment of their cardiac rehabilitation process for all eligible patients, identify priorities and allocate appropriate resources, by end March 2010.

4.32ISD has undertaken considerable work on cardiac rehabilitation data. This work is now an integral part of the overall NHSQISCHD Improvement Management Programme (see paragraph 6.14), where arrangements for ongoing national audit are being put in place.

4.33 The 'Heart Manual' developed by NHS Lothian is a home-based self management programme used in many parts of Scotland and is a unique example of a psychologically-informed cardiac rehabilitation programme which promotes confidence in heart patients. Evaluation has shown that those using it require less contact with their GP, with fewer re-admissions to hospital in the first 6 months.

Action:

NHS Boards, through their cardiac MCNs, should implement the 'Heart Manual' or equivalent to ensure that people receive structured information, education and develop the skills needed to help them manage their own condition. This is in line with the Scottish Government's general thinking on the self management of long term conditions.

'Braveheart' Project

The 'Braveheart' project in Falkirk uses older people who have taken part in cardiac rehabilitation to mentor others who are just starting on the rehabilitation programme post MI. The project has proved extremely successful and produced wider than expected benefits for participants, mentors and health professionals.

Action:

NHS Boards, through their cardiac MCNs, drawing on the Network's patient representatives, should adopt the 'Braveheart' approach by end December 2009.

Heart Failure Services

4.34 Improved survival rates from acute myocardial infarction and the demographics of an ageing population mean that heart failure is becoming an increasingly prevalent condition, often associated with the presence of other diseases.

4.35ISD data show that the standardised mortality rate for cardiac failure has fallen from 14.8 per 100,000 population in 1998 to 5.3 in 2007 (Graph 3). Non-elective admissions have also dropped very significantly over this period. However, elective admissions for cardiac failure show little in the way of decline, confirming this as a high prevalence condition in the Scottish population. It is thought that there may be as many as 100,000 people in Scotland living with heart failure at present, resulting in very significant increases in the numbers (and costs) of prescriptions for heart failure drugs over recent years. Costs in this area rose from ~ £27m in 2000-01 to ~ £44m in 2006-07.

Graph 3: Standardised Mortality for Heart Failure
Age-Sex Standardised Mortality Rate per 100,000 Population

4.36 The BHF Scotland Heart Failure Nurse Educator project, established in NHS Lothian in 2008, aims to help educate primary care teams about the needs of those with heart failure. A local physician with a special interest in heart failure should be identified in each secondary care setting to lead a heart failure team which will have a role in: direct management of people with heart failure; provision of specialist advice to other clinical colleagues; and links to regional and national heart failure services.

4.37 While the current post in NHS Lothian is fully funded by BHF, this level of support would not be possible across the country. The Foundation can however offer other support for the development of this role, such as expertise, networking, development of further education and, potentially, direct financial support for staff development through its 'adoption' programme for health professionals. The key is ensuring that the heart failure staff increase the knowledge of other health professionals working in primary care, to enable them to manage the more stable patients, freeing up the specialist heart failure nurses to see those with more complex needs.

Action:

NHS Boards, through their cardiac MCNs and CHPs, should adopt the approach taken in this project by March 2011.

4.38 Managed Discharge (from hospital to primary care) is crucial in the management of those with heart failure, and should aim to provide:

• hospital discharge instructions that address all of the following: activity level, diet, discharge medications, follow-up appointment, weight monitoring, and what to do if symptoms worsen (these items are being considered by the Scottish Patient Safety Programme as a key performance measure for discharge of patients with CHD);
• community support, for example through community-based heart failure nurses;
• outpatient multidisciplinary follow up, including pharmacy input;
• regular review of drug treatment to optimise pharmacological interventions and re-inforcement of patient education on weight monitoring; and
• provision of information, including self management programmes, in language which can be readily understood.

4.39 Out-of-hours ( OOH) support is vital for people with heart failure. It is important that information is available to clinicians during the OOH period to optimise heart failure patients' care. Currently the Emergency Care Summary ( ECS), which includes information on current medication and allergies, is available for the vast majority of patients to OOH services, NHS 24 and A&E. For patients with heart failure with particular needs (which could include complex care arrangements, or where a patient has to be referred directly for specialist care), GPs can use the 'special notes' system to provide further information to these services. This is sent by the practice to the Board OOH Hub and, after electronic entry, is available to OOH services in NHS 24 and Boards should the patient make contact. Improvement and standardisation of this process are currently under way to ensure that heart failure patients, as well as others, can benefit maximally from this availability of information.

4.40 A short-life working group involving NHS 24 and the chronic heart failure nurses from Glasgow is considering ways of delivering a better service for people with heart failure, particularly in relation to the management of their medication and to encourage the use of its 'special notes' facility. Concerns exist about the capacity of the existing service to cope with additional demands, since current caseloads of specialist heart failure nurses are already very high.

Action:

The recommendations of the short life working group should be considered by NHS Boards through their cardiac MCNs as soon as available.

4.41 A review of specialist heart failure services in Scotland, published in the autumn of 2008 by Chest, Heart & Stroke Scotland and the British Heart Foundation on behalf of the Scottish Heart Failure Nurse Forum, highlighted areas in need of resources and investment to meet the rising number of those requiring specialist support.

4.42 A recent BHF research project indicated that those who received care from a heart failure specialist nurse valued the service very highly. Having one person with whom they could build up a relationship of trust and understanding noticeably improved their recovery rate and increased their own confidence in being able to cope with their heart condition. The fact that heart failure nurse specialists are often supplementary prescribers, working with medical and pharmacy colleagues to locally agreed medical therapy guidelines, contributes to the observed reductions in hospital admissions in these nurse-led services.

4.43 In remote and rural locations, where specialist heart failure nurses may be in short supply, the potential for a 'generic' cardiovascular nurse to undertake both heart failure and cardiac rehabilitation roles should be considered. Any nurse-led heart failure service, wherever it is based, needs to link to the exercise programme component of the local cardiac rehabilitation service. Heart failure nurses could also provide psychological support as part of routine management, with support and supervision by specialist psychologists. Consideration should be given to extending the working hours of heart failure nurses, so that they are able to provide a service out-of-hours, especially at weekends.

4.44 The current minimum service level requirement is 1 WTE Specialist Heart Failure Nurse per 100,000 population. The ratio should be considered with caution when assessing the demands of remote and rural areas. The service at present manages only those who have heart failure secondary to left ventricular dysfunction, but this is only one cause of heart failure and the evidence suggests that many more people living in Scotland have heart failure due to other causes.

Action:

In preparation for the publication of the new CHD clinical standards, NHS Boards, through their cardiac MCNs, should undertake a needs assessment of cardiovascular nurse specialists delivering care to heart failure patients, including the potential for delivering out-of-hours cover through the education of primary care nurses, by the end of December 2009.

4.45 Social isolation is one of the most marked features of advanced heart failure. Chest, Heart & Stroke Scotland offers a heart failure support service in NHS Lothian, Lanarkshire, Greater Glasgow & Clyde and Highland. This has been awarded Approved Providers Standards and incorporates:

• a volunteer befriending service;
• forum meetings for patients, carers and health professionals; and
• a regular newsletter.

Action:

NHS Boards, through their cardiac MCNs, should work with Chest, Heart & Stroke Scotland to replicate these initiatives across Scotland.

4.46 In response to new evidence on the optimal management of patients with heart failure due to left ventricular dysfunction, from April 2009 a new indicator has been added to the QOF to encourage the prescription of Beta blockers in addition to ACE inhibitors or angiotensin receptor blockers in appropriate patients.

4.47 Palliative care is crucially important. In March 2008, the Scottish Partnership for Palliative Care ( SPPC) and the BHF Scotland published Living and dying with advanced heart failure: a palliative care approach. The report responded to a recommendation in the CHD and Stroke Strategy in 2001 that provision should be made to meet the palliative care needs of people with end-stage heart failure. A succession of reports from the Scottish Audit of Surgical Mortality has highlighted the plight of those with end-stage heart failure dying in acute hospitals with a worse prognosis and poorer quality of life than many people with cancer, but with limited access to the benefits that a palliative care approach could bring both them and their families.

4.48SIGN Guideline 95 on the management of chronic heart failure has a section on palliative care that includes a clear recommendation that a palliative care approach should be adopted by all clinicians managing people with chronic heart failure from the early stages of the disease. The recommendations in the Guideline have been incorporated into the draft NHSQIS clinical standards on the prevention and treatment of CHD. The relevant draft standard states that patients who remain symptomatic despite optimal treatment/
maximum tolerated therapy are identified and offered a supportive and palliative care approach. It is essential that people with advanced heart failure are included on the palliative care register in each general practice, their care needs assessed and care planned to meet those needs.

4.49 An important recommendation in the SPPC/ BHF report is that implementation of a combination of active and palliative care will be best achieved by a model of shared care and enhanced communication involving multi-professional teams across cardiology, primary care, specialist palliative care, general medicine, medicine for the elderly and social care. Care should be co-ordinated by a named individual such as a heart failure specialist nurse or other suitably trained health professional. This will help ensure that people with advanced heart failure are re-assessed regularly to confirm that palliation is the appropriate choice amongst an increasing number of management strategies.

4.50 The report highlights the role of both the cardiac and the palliative care Managed Clinical Networks in taking forward implementation of its recommendations locally, with support, as needed, from the National Centre for the Treatment of Advanced Heart Failure.

4.51 All NHS Boards have now submitted delivery plans against the Actions in Living and Dying Well which aim to provide services for those patients with palliative and end of life care needs, irrespective of diagnosis, and which incorporate the recommendations from the SPPC report Living and dying with advanced heart failure: a palliative care approach.

4.52 In November 2008, a Palliative Care Directed Enhanced Service ( DES) was introduced in Scotland. This emphasised the importance of including all patients with palliative care needs (not just those with cancer) on the GP palliative care register. The DES also requires practices to compile a care plan for such patients and to ensure that a summary of this is made available to OOH services. This will initially be through the 'special notes' system (see paragraph 4.39) but an electronic Palliative Care Summary (e PCS) is currently being piloted, with anticipated roll out across Scotland later in 2009.

Action:

NHS Boards' cardiac and palliative care MCNs should jointly undertake an audit of practices' implementation of the palliative care DES, and collaborate to ensure implementation of Boards' Living and Dying Well Delivery Plans by end December 2009.

4.53 The creation by the British Heart Foundation and Marie Curie Cancer Care of a centre of excellence in Glasgow, and their investment in research and development for those with advanced heart failure, represents a major contribution in this area. A Marie Curie Cancer Care and British Heart Foundation collaborative project, working together with NHS Greater Glasgow & Clyde, aims to develop equity of access to palliative care services for cancer and cardiac patients.

Cardiac Interventions

4.54 Historically, cardiologists have been appointed to District General Hospitals ( DGH), but with a regional responsibility to deliver specialist aspects of service on a sessional basis. In particular, cardiologists have been appointed to DGHs with sessions in coronary intervention, and more recently device therapy. There is definite scope to develop this model further to include the full range of regional services.

4.55 Coronary artery bypass grafting will continue to be delivered from the existing three centres in Scotland, with referrals from interventional cardiology hubs.

4.56 The establishment within DGHs of cardiac catheterisation facilities which are unable to deliver either elective or emergency coronary interventions is not the preferred model for Scotland, and existing DGH catheter laboratories must be involved in a wider interventional network at regional level to ensure high standards of care and optimal use of resources, particularly with the advent of primary PCI (see paragraph 4.8 onwards).

4.57 An assessment is needed of the current and future levels of elective interventional services in Scotland. Issues that might be addressed include: predicted patient numbers; the various types of procedure; the staff resources required and any associated workforce issues affecting cardiac service; how services will be configured; and how equity of access to regional and national services can be assured. The report Access to Cardiac Care in the UK, published in June 2009 on behalf of the Cardio & Vascular Coalition, sets out thinking on projected future need for cardiac interventions.

4.58 The newly-established Scottish Imaging Managed Clinical Network will be keeping a watching brief on developments relating to the future of non-invasive coronary imaging, as part of its horizon-scanning role and will make recommendations for their planned introduction as appropriate.

West of Scotland Heart and Lung Centre

4.59 The West of Scotland Heart and Lung Centre at the Golden Jubilee National Hospital ( GJNH) became operational in 2007 and made a significant contribution to meeting the waiting time guarantee in cardiac activity by 31 December 2007. The migration of clinical services from Glasgow and Lanarkshire means that the Centre is now one of the largest in the UK, serving the residents of all six West of Scotland NHS Boards. The new Centre provides the following services:

• all adult cardiothoracic surgery and outpatient activity previously carried out at Glasgow Royal and Western Infirmaries;
• all adult thoracic surgery previously carried out at Hairmyres Hospital; and
• all interventional cardiology services previously carried out in Glasgow, including angiography/angioplasty, electrophysiology and complex pacemaker implantation

as well as providing a home to three of Scotland's national services:

• the National Centre for the Treatment of Advanced Heart Failure;
• the Scottish Pulmonary Vascular Unit ( SPVU); and
• the Scottish Adult Congenital Cardiac Service ( SACCS), previously known as the Grown-Up Congenital Heart Unit.

4.60 Patients will continue to be treated in their local hospital in the first instance. Those who need to have a planned surgical or interventional cardiology procedure are referred for treatment at the Centre, with the exception of interventional cardiology in Lanarkshire which continues to be provided at Hairmyres Hospital.

4.61 The issue of Percutaneous Aortic Valve Replacement/Transcatheter Aortic Valve Implantation ( TAVI) has been the subject of a National Institute for health and Clinical Excellence ( NICE) interventional procedure guidance ( IPG266) which noted that:

'evidence on TAVI for aortic stenosis is limited to small numbers of patients who were considered to be at high risk for conventional cardiac surgery. It shows good short-term efficacy but there is little evidence on long term outcomes.'

4.62 This issue will need to be considered at regional level once there is clear evidence that the techniques proposed are safe and effective. Scoping work on TAVI being undertaken by NHSQIS will also help to inform future consideration. This will be an issue for the Scottish Health Technologies Group to consider in due course, as part of the development of better, more streamlined approaches to evaluating new devices and technologies in Scotland. Predicted numbers of procedures are low and suggest that the technique may be more appropriately commissioned as a national service.

4.63 Better mechanisms are needed to recognise and take account of the local, regional and national impact of the introduction of highly specialised new technologies, particularly given their potential funding implications, which inevitably fall on territorial Boards. There is also a clear need to link the aspirations of any given specialty at national level to regional developments and Boards' local planning and prioritisation processes. This can best be achieved through proper integration of MCNs with local and regional planning structures.

Action:

NHS Boards should continue to ensure that their MCNs are fully integrated with local and regional planning and prioritisation processes.

4.64 The process of planning services at regional level, and their links to local and national services, will be helped by the arrangements which each of the RPGs now has in place for cardiac services. It is essential, however, that the arrangements developed by each RPG should be consistent with the arrangements in other parts of the country, to ensure an equitable approach across the whole of Scotland. This process will be overseen by the inter-regional planning group referred to at paragraph 4.19.

National Centre for the Treatment of Advanced Heart Failure

4.65 Data show that many young survivors of acute myocardial infarction and other life threatening cardiac events, such as viral myocarditis, never access the kind of circulatory support that would enable them to survive the acute injury long enough either to stabilise and recover, or to undergo urgent cardiac transplantation.

4.66 In recognition of this, and of the increasing number of people with chronic heart failure, the 2004 CHD and Stroke Strategy Update highlighted the establishment of a national centre for the treatment of advanced heart failure, with the associated additional resource of £450k allocated from Strategy funding. The National Centre is a nationally designated service which includes the original Scottish Heart Transplant Service. Donor rates and the development of new medical technologies such as cardiac resynchronisation therapy ( CRT) for the management of chronic heart failure, mean that heart transplantation is increasingly seen as one of a range of treatment options.

4.67 The National Centre aims to improve management of the condition by:

• updating and educating professional and management colleagues throughout NHSScotland about the new service;
• acting as a tertiary source of advice to clinical colleagues at regional and local level;
• addressing the unmet needs of heart failure patients;
• establishing appropriate 'rescue' services for acute severe heart failure; and
• promoting the role of non-transplant cardiac surgery in heart failure patients.

The Centre also has a role in national and international research.

4.68 For the National Centre to fulfil its potential in these areas, it needs to work synergistically with the Scottish Adult Congenital Cardiac Service and Scottish Pulmonary Vascular Unit, both of which are also nationally designated and funded and co-located at the Golden Jubilee National Hospital.

4.69 The National Centre currently has no psychology provision, a situation that needs to be rectified. In particular, the National Centre must be able to offer psychological profiling prior to transplantation, and evidence-based psychological assessment and treatment of those who have had a heart transplant. The material on Cardiac Health contained in the 'Guide to delivering evidence-based Psychological Therapies in Scotland', published by the Scottish Government in December 2008, should be of assistance.

Action:

National Services Division of NHS National Services Scotland, as commissioners of the national service, should address the issue of psychological support as a matter of urgency, with any additional resources required obtained through top-slicing of NHS Boards' budgets.

Paediatric Cardiac Services

4.70 The national Paediatric Cardiac Services consist of 3 elements of care:

• paediatric cardiac surgery;
• paediatric interventional cardiology; and
• neonatal cardiology.

4.71 The worldwide incidence of congenital heart disease is approximately 8 per 1000 live births. Incidence rates in Scotland have varied between 8.29-11.02 per 1000 live births ( ISD 1995-2004), which equates to around 450-600 children per year, being born with this condition. The survival of children born with congenital heart disease has improved dramatically over the past 30 years, through improvements in diagnosis, medical and surgical management as well as anaesthetic care.

4.72 It is estimated by the Scottish Adult Congenital Cardiac Service (see paragraphs 4.77-4.78) that 78% of children will survive into adulthood and that approximately 135 patients each year make the transition from the paediatric services. This means that by 2010, there will be an estimated 15,600 adult patients in Scotland living with adult congenital cardiac disease.

4.73 All surgical procedures are carried out at the Royal Hospital for Sick Children in Glasgow (Yorkhill Hospital). The Service will move to the site of the Southern General Hospital, when the new children's hospital is complete, providing an integrated paediatric and neonatal service. A number of outreach clinics are carried out by the cardiologists across Scotland, covering all Board areas with the exception of NHS Orkney and NHS Western Isles.

4.74 Outwith the services provided at Yorkhill Hospital, there are a small number of children born with hypoplastic left heart syndrome who receive surgery at Birmingham Children's Hospital. This is a very complex condition with an associated risk of high mortality. Plans are currently under way to re-introduce hypoplastic left heart syndrome surgery to Yorkhill Hospital, providing complete service provision for children in Scotland by 2010.

4.75 NHSScotland is currently participating in a Department of Health review of paediatric cardiac surgery.

4.76 There are very close working links between Paediatric Cardiac Services and the Scottish Adult Congenital Cardiac Service ( SACCS), with joint teenage clinics to help the transition between the paediatric and adult services. The paediatric surgeons also carry out the adult congenital surgery. In addition, the SACCS clinicians provide outreach clinics to pregnant women with congenital cardiac disease at the Queen Mother's Hospital in Glasgow. There are plans to expand the existing outreach clinics in Edinburgh and Inverness to cover more areas of Scotland, and improve the links with other local clinicians.

Scottish Adult Congenital Cardiac Service

4.77SACCS has been developed in response to the needs of those with congenital heart disease who are now surviving into adulthood. The service has recently introduced cardiac MRI scanning as the most up-to-date diagnostic tool available, and is in the process of developing its outreach arrangements, aiming to provide appropriate local support for those living with congenital heart disease, with ready access to the specialist centre.

4.78 It is essential that the service should reflect the indicators of high quality care included in the commissioning guide published by the Department of Health in May 2006. NSD, as commissioners of the Scottish service, is working with the service providers to meet these indicators. Further work also needs to be done on raising awareness of the service among both patients and local clinicians (whether in primary care or secondary care), including the need for the development of clear referral pathways. In addition, robust data on the number of people with congenital heart disease need to be compiled across Scotland.

Action:

NSD and the Golden Jubilee National Hospital should work towards achievement of the DH commissioning standards for adult congenital heart disease and address the other issues of awareness raising, development of referral pathways and data collection identified above.

Inherited Cardiac Conditions

4.79 Inherited cardiac conditions often carry a large psychological burden and have a significant impact on quality of life. The main concern expressed by patient support groups is the lack of organised care, support and investigation. In response to this, a combined cardiac genetic service has been established and funded in the west of Scotland. The key to the service is the multi-disciplinary team, with cardiological and clinical genetic medical expertise, imaging and access to appropriate genetic testing.

4.80 There are three main categories of inherited cardiac disease:

• arrhythmias;
• cardiomyopathies; and
• multi-system genetic diseases with a significant cardiac involvement such as the muscular dystrophies and connective tissue disorders.

All have the potential to cause sudden cardiac death, though this is more frequently associated with the cardiomyopathies and arrhythmias.

Familial Arrhythmia Network Scotland

4.81 Inherited cardiac diseases are a common cause of sudden unexplained death ( SUD) in young people. A recent published study found an inherited cause for 40% of SUD below the age of 40. In 2008, the national Managed Clinical Network, the 'Familial Arrhythmia Network Scotland' ( FANS), was established to coordinate the management in Scotland of families with a proven or suspected familial arrhythmia. The MCN comprises cardiologists, clinical geneticists and pathologists who are involved in assessing such patients and their families. Patients or families can be referred to the regional network clinic for assessment, specialist cardiological investigation and genetic testing and for co-ordination of cascade family screening and counselling. Affected patients and affected relatives identified and treated through cascade screening will in due course be entered into a national registry and will, if appropriate, be referred back to their local cardiology, medical or paediatric services for follow up, with further support or advice available from the MCN. A recommendation for referral of patients at risk of, or diagnosed with, hereditary arrhythmias to a cardiology specialist who is part of FANS, is included in NHSQIS draft clinical standards for CHD.

4.82 The MCN aims to raise awareness of familial arrhythmias, define and agree referral protocols, develop national guidance for clinical and genetic testing and establish a national register in conjunction with ISD. The register will support long term follow-up, including testing for the late onset of a condition, administration of new therapies and scope for identifying new genes and genetic tests as they become available.

Action:

ISD should work with FANS towards developing a national register of familial arrythmias.

4.83 As with all MCNs, it is essential that those living with the condition concerned, or voluntary organisations that speak on their behalf, should be fully integrated into their work. In the case of FANS, that input is provided by Scottish HART (Heart at Risk Testing), the Cardiomyopathy Association in Scotland and GIG (the Genetic Interest Group).

4.84 The funding of the genetic counsellors required by the Network comes from the resources which have been made available for strengthening NHS genetics services through implementation of the Review of Genetics in Scotland (2006). The additional genetic tests required are similarly funded through strengthening the Scottish Molecular Genetics Consortium. FANS needs to have strong links with local cardiac Managed Clinical Networks, with relevant regional services and the SACCS.

4.85 The service's tertiary activities (clinical and genetic diagnostic testing, risk stratification and initiation of arrhythmia management) are centred in cardiac genetic services and specialist arrhythmia services run in Aberdeen, Dundee, Edinburgh and Glasgow, with subsequent follow up remaining with local cardiology services. A familial arrhythmia NHS internet-based clinical record system is being developed, and this will allow selected participants secure access to record key clinical information for families throughout Scotland, and access diagnostic information about families to assist in individual case assessment and management. The materials currently being developed by the Network include referral pathways for familial arrhythmia, familial cardiomyopathy, and in particular sudden unexplained death and sudden cardiac death, through collaboration with the forensic pathology network and the Crown Office and Procurator Fiscal Service.

Cardiac Assessment of Young Athletes ( CAYA) Pilot

4.86 The UK National Screening Committee ( NSC) has on a number of occasions considered the evidence base for the introduction of a population screening programme for conditions such as hypertrophic cardiomyopathy or other causes of sudden cardiac death. The Committee's advice, which the Scottish Government has accepted, is that such a programme is not justified, in part because of the lack of an agreed definition of hypertrophic cardiomyopathy and the lack of a diagnostic test that could accurately predict the outcome for an individual. There are also concerns about wrongly labelling someone as being at risk of sudden death, since this might unnecessarily restrict the activities of many children who would never develop clinical problems, and cause difficulties in adult life, for example in relation to insurance, mortgages and employment. The Committee has however advised that close relatives of those diagnosed with a condition such as hypertrophic cardiomyopathy should be offered tests and advice, and the Scottish Government fully accepts that advice.

4.87 The Committee has now asked for further research to be undertaken on the specific issue of pre-participation screening of young athletes for hypertrophic cardiomyopathy or other causes of sudden cardiac death.

4.88 The Cardiac Assessment in Young Athletes programme at the Sports Medicine Centre at the National Stadium, Hampden Park, was launched in August 2008 by the Cabinet Secretary for Health and Wellbeing as a joint project involving the Scottish Government, the Scottish Football Association and the University of Glasgow. It is a two-year pilot which will offer cardiovascular assessment on a voluntary basis to young Scots over the age of 16 who take part in any organised amateur sports.

4.89 The programme at Hampden is based on an internationally-recognised questionnaire, the use of ECG and, in addition, ultrasonography. Ultrasound, which has not been used before in such a programme, is intended to improve the overall accuracy of the assessment. Although cardiomyopathy is one of the assessment targets, other abnormalities of the electrical tissue, structural problems of the heart and circulation will also be sought.

4.90 It is likely that the programme will produce a very small number of positive cases, perhaps two in total during its two years' duration. If a problem is found, the athlete will be directed to the appropriate clinical service for full assessment and care.

4.91 There needs to be a greater focus on meeting the needs of relatives following sudden cardiac death. The British Heart Foundation has recently launched a UK-wide Genetic Information Service to help relatives deal with the consequences of losing a loved one to an inherited heart condition. The new Helpline service will support the need for bereaved families to have an assessment in a specialist clinic. This could save potentially hundreds of lives by detecting and treating an inherited heart condition in other family members. The Helpline's information about specialist clinics in Scotland has been updated with the help of cardiologists and clinical geneticists.

Neuromuscular disorders

4.92 Cardiac involvement occurs in a variety of inherited neuromuscular disorders, for example clinically-apparent cardiomyopathy, is observed in about one-third of those with Duchenne and Becker muscular dystrophy. In the long term, many develop cardiac abnormalities and many require permanent pacemakers or implanted defibrillators.

4.93FANS (see paragraph 4.81) is developing links with the Scottish Muscle Network, which covers cardiac problems related to inherited neuro-muscular conditions such as myotonic dystrophy or Duchenne Muscular Dystrophy. FANS is only a partial solution to problems associated with sudden cardiac death, in that it addresses deaths related to inherited arrhythmias but not those related to abnormalities such as hypertrophic cardiomyopathy. The reasons for this focussed remit are that, unlike the cardiomyopathies and the multi-system genetic conditions, the inherited familial arrhythmias can be diagnostically challenging, and specialist input, usually from cardiologists with an arrhythmia background, is required for diagnosis, risk stratification and treatment. Currently, arrhythmia specialists are committed to a role in FANS, but a number would be unable to commit to a wider remit covering all inherited cardiac conditions.

4.94FANS, once fully established, should expand to cover cardiomyopathies, with the recruitment of cardiologists with a sub-specialty interest in these conditions. Inherited cardiac connective tissue disorders (Marfan's syndrome and related conditions) already have pathways in Scotland, based on the Scottish Clinical Genetics Guidelines project 1996-2000. However, they should, with the other categories of disease above, in the future be incorporated within a single national Network which includes all forms of inherited cardiac disorders. This development would enable closer co-ordination of clinical services for these patients across Scotland.

Action:

Over time, there should be a single national Managed Clinical Network covering all inherited cardiac conditions.

Familial Hypercholesterolaemia

4.95 Familial Hypercholesterolaemia ( FH) is a form of inherited high cholesterol which affects over 10,000 people in Scotland and which can cause heart attacks or strokes at a young age, even in the 20s and 30s.

4.96 Despite the continual downward trend in rates of cardiovascular mortality over the past 10 years, as noted at paragraph 2.1 rates of decline of mortality for men and women aged 35 to 54 years have flattened out. A significant proportion of these individuals could have FH. The risk of myocardial infarction in carriers of the FH gene is extremely high and it is estimated that 50% of men will have an MI by the aged of 50 and 30% of women by the age of 60.

4.97 When an individual is diagnosed with FH, it is essential that all close relatives have their cholesterol levels measured so that they too can start lifestyle modifications, and preventive treatments if necessary. This approach is supported by the NHSQIS draft clinical standards for prevention and treatment of CHD. Children of people with FH should be tested before the age of 10. There is a need to raise awareness of FH among primary care professionals, to prioritise the need for diagnosis, to define and agree referral protocols, and to develop good practice for clinical investigations, genetic testing and cascade screening within families.

Action:

A national forum for FH should be established by the Scottish Government Health Directorates to address the issues identified above by end 2009.

4.98 The UK National Screening Committee ( NSC) endorses cascade screening within the families of affected individuals. This approach is cost-effective because it allows the identification of the sub-group of patients who require treatment with more powerful statins.

4.99 The clinical consensus is that patients with FH and cascade screening within families should be handled though lipid clinics, with the input of genetic expertise, probably in the form of genetic counsellors from the local genetic service. Through the 2006 review of genetic services in Scotland, money has been allocated to increase the number of such counsellors.

4.100 The NICE guideline on FH published in August 2008 advocates cascade screening within families, using both lipid and DNA testing as a confirmatory test, and the Scottish Molecular Genetics Consortium has asked the Aberdeen molecular genetics laboratory to look at how it might provide the necessary laboratory tests in Scotland.

Action:

The Aberdeen molecular genetics laboratory should develop a funding proposal for a pilot project of cascade testing for FH, for submission to CSO.

4.101 The 2002 Strategy highlighted the limited opportunities for nurses in postgraduate training in the care of those with CHD. The BHF has since funded the post of BHF Lecturer in Cardiac Care at the University of Glasgow and this has supported the development of courses 'Managing Cardiovascular Risk' and 'Managing Cardiac Care'.