5: SERVICES FOR STROKE
5.1 Stroke services, shaped by the local Managed Clinical Network in each NHS Board, need to provide evidence-based and high quality care at all stages, from identification and treatment of a transient ischaemic attack ( TIA) to prevent a stroke, through to the long term support of those with multiple impairments recovering from a stroke (and their unpaid carers) in the community.
NHS Boards, through their stroke MCNs, should ensure that their stroke services are comprehensive and include each of the essential elements identified in this chapter.
5.2 A revised SIGN guideline (108) was published in December 2008 focusing on the most recent evidence on optimal management of patients with acute stroke and TIA. This builds on previous SIGN guidelines covering stroke rehabilitation and swallowing problems which emphasise how modern management can improve outcomes by preventing further stroke, reducing disability and promoting recovery. SIGN 64, which deals with stroke rehabilitation and complications, is currently under review.
5.3 The level of public understanding about stroke is low and confused, with many believing that stroke is a heart condition, not a 'brain attack', a fact re-inforced by a recent Lancet editorial (Vol 373 May 2, 2009, p 1496). Both the revised SIGN Guideline 108 on acute stroke and the revised NHSQIS clinical standards on stroke emphasise that a stroke is a medical emergency on a par with a heart attack. To address these issues, the National Advisory Committee on Stroke has been encouraging the FAST Campaign, the dissemination of which has been supported by Chest, Heart & Stroke Scotland, and by the Stroke Association in England. Details are given in the box below.
Think FAST & save a life
A stroke is a medical emergency.
It can happen to anyone and it happens fast.
By calling 999 you help to ensure that someone gets diagnosis and
treatment as quickly as possible.
This will improve their chances of recovery.
To check if someone is having a stroke, use the F- A- S- T test.
Face: Can they smile? Does one side droop?
Arm: Can they lift both arms? Is one weak?
Speech: Is their speech slurred or muddled?
Time: to call 999.
If you see these signs call 999 FAST.
The faster you react, the better their chances of recovery.
5.4 The NHS/Chest, Heart & Stroke Scotland campaign is running in NHS Grampian and Highland (June 2009), NHS Lanarkshire and NHS Greater Glasgow & Clyde (October 2009) and NHS Lothian and NHS Fife (February 2010). The National Advisory Committee on Stroke ( NACS) has provided funding of £30,000 to support the evaluation of the campaign. The intention would then be to roll it out to all parts of Scotland. In rolling out and evaluating FAST, consideration should be given to the following issues:
- the fact that FAST was originally developed for paramedics;
- that it does not include some signs of stroke, such as disturbance of vision;
- that up to 20% of those identified through FAST are confirmed with a diagnosis other than stroke; and
- the potential impact in different localities, socio-economic and demographic groups.
The Scottish Government Health Directorates and NHS Boards, through their stroke Managed Clinical Networks, should continue to support the ongoing public awareness campaigns run by Chest, Heart & Stroke Scotland, taking account of the evaluation of the Stroke Association campaign in England.
The National Advisory Committee on Stroke should consider how best to develop a national strategy for the evaluation and delivery of FAST by end March 2010.
NHS Boards, through their stroke MCNs, in conjunction with CHPs and the voluntary sector should develop a local communications strategy to raise public awareness of stroke by end March 2010.
5.5FAST campaign awareness should be included in First Aid training, as this would raise awareness in the workplace, schools, community groups and wider NHS services. The Scottish Ambulance Service and NHS 24 should work together to provide a co-ordinated response to calls for help from people with possible stroke symptoms, and to work with the stroke MCNs to ensure that protocols reflect local stroke services' capabilities.
5.6 The SAS has developed a strategy for the management of stroke in the pre-hospital setting. FAST training and recognition are in place for all front-line staff.
NHS 24 staff, primary care staff, ambulance crews and A&E department staff should all receive appropriate stroke awareness training, including FAST.
5.7 A Key Performance Indicator ( KPI) for ensuring rapid transfer and assessment of patients presenting with acute stroke is being developed. This gives target times for each stage in the process of reaching a decision on whether the patient is suitable for thrombolysis from first presentation to unscheduled care. The Scottish Stroke Care Audit ( SSCA) Steering Group will monitor NHS Boards' performance in relation to this indicator.
5.8 The collection of data which will allow monitoring of performance against the new NHSQIS standards is crucial. They will be reviewed regularly to ensure they reflect the most up-to-date evidence, based on clinical guidelines. Increasingly, there will be a need to capture data from both the pre- and post-hospital stages of the patient pathway which can then be linked to data from the hospital phase to ensure the whole pathway is monitored and improved. The tools to allow this to happen include: the development of SSCA; integration with ISD data; incorporation of KPI for pre-hospital care; and QOF developments in the future, to reflect ongoing management in primary care.
ISD will integrate audits of pre-hospital and hospital-based stroke care, building on SSCA work, and provide a minimum dataset to reflect performance against NHSQIS standards by end December 2009.
5.9 Stroke and transient ischaemic attacks ( TIAs) are sufficiently common that most stroke services can and should be provided locally. This makes both early access to specialist care and discharge from secondary care back to the community easier.
5.10 About one-fifth of those who suffer a stroke will have had warning symptoms in the form of a TIA in the days or weeks before the onset of a stroke. This offers a unique opportunity to prevent a disabling or even fatal stroke using health behaviour change as well as interventions such as anti-platelet drugs, anticoagulants, cholesterol and blood pressure lowering medication. In some cases surgery on the carotid artery will also reduce the risk of subsequent stroke (see paragraph 5.53).
5.11 Daily TIA clinics and TIA Hotlines are two models of service which offer the necessary immediate access to clinical assessment and treatments to reduce the risk of future stroke.
TIA Hotline in NHS Lothian
From 1 March 2007 GPs across Lothian have been able to ring a dedicated number to speak directly to a Stroke Consultant and obtain immediate advice regarding the diagnosis, immediate management and further assessment of the patient. If the GP is still with the patient, the consultant can even ask the patient directly about their symptoms to reach a clearer diagnosis. Suitable patients are offered immediate admission for thrombolytic therapy. Others are offered routine admission or given an appointment for outpatient assessment within a few days. The Consultant keeps in close phone contact with the Neurovascular Clinical secretary at the Western General Hospital who uses a secure shared spreadsheet on the web to allocate available clinic slots. Following the introduction of the hotline, waiting time for TIA assessment dropped from 11 days to an average of three days. Importantly, the hotline ensures early appropriate treatment, with specialist assessment completed within seven days in virtually all patients.
Unscheduled Care TIA & Stroke Telemedicine Service to Orkney
Current evidence suggests TIA patients should be seen by the specialist within 24 hours and commenced on the necessary secondary prevention treatment immediately. By using video consultations, stroke specialists in Aberdeen can see all TIA patients on Orkney within this time scale. Following this video link assessment patients are then transferred to the stroke unit for further investigations and treatment can then take place as soon as possible after the event, which has been shown to greatly improve patient outcomes. The service went live at the end of July 2008. By end of March 2009 16 patients had been seen. Of the 16 patients, 13 were transferred and three avoided transfer to Aberdeen after the specialist telemedicine consultation. This project won the Improvement and Innovation Award at the Scottish Health Awards in November 2008. Numbers will never be large with an Orkney population of 18,000, however there is potential to replicate this service in other areas. For example Grampian, with a population of 526,000, could use the existing video conferencing equipment in the 12 community hospitals and link into the specialists in Aberdeen, reducing the need to travel to medical outpatients prior to referral for further radiology or vascular investigations. A pilot of this is being considered in this area.
5.12 Using the model described above the patient would go to their GP with symptoms and be given an appointment within 24 hours for the nearest telemedicine consulting area, which could be their GP practice or the nearest minor injury unit. Either way they would link up with the TIA specialist on call.
NHS Boards, through their stroke MCNs, should engage with the Scottish Centre for Telehealth in the first instance, to ascertain whether this is a viable option for TIA outpatient redesign in their area.
5.13 As with TIAs, those experiencing symptoms of stroke need to seek immediate medical advice and get rapid access to services at local or regional level. This is particularly important if treatment with thrombolytic drugs is under consideration, as this needs to be given within at most 4.5 hours of first symptom onset. Much better joint planning between primary care, NHS 24, the Scottish Ambulance Service and Emergency Admission Units is needed to ensure that all eligible patients across Scotland will be able to access specialist assessment and early treatment. As a result of discussions with NHS 24, SAS and the stroke MCNs, protocols and training are being developed and an impact assessment is under way. The Scottish Stroke Care Audit will monitor the performance of the pre-hospital services for stroke patients. It will look at delays from the time of first call (999 or NHS 24) to arrival of paramedics, alerting of local stroke services, and then in-hospital delays in the pathway to thrombolysis, including delays to brain imaging. These data will be used by NHS Boards, working with their stroke MCNs, to drive reductions in delays and maximise the number of those who can benefit from thrombolysis.
5.14 Treatment with recombinant tissue plasminogen activator (rt- PA) within 4.5 hours of symptom onset is known to improve the outcome for some stroke patients, but only a minority is suitable for this treatment. It should not be seen as a 'cure' for ischaemic stroke, rather that for some patients successful therapy can reduce severity, including the level of disability or impairment which can accompany this type of event.
5.15 In those patients where the time of symptom onset can be established definitely, emergency medical services need to be configured to allow delivery of thrombolytic therapy within the required time period. The receiving unit must be in a position to rapidly assess and confirm suitability to start treatment as soon as potentially eligible patients arrive at the front door, and to give the treatment within an hour, both in and out of hours.
5.16 For thrombolysis to be given safely, the patient must be assessed by an experienced clinician and have an immediate brain scan. There are too few stroke specialists in Scotland to provide an on site specialist round-the-clock service in each hospital admitting acute stroke patients, resulting in major inequalities in access to thrombolysis. Those living close to a major teaching hospital have some access, while those living more remotely have none. A nurse-led first assessment of potential patients for thrombolysis has been set up in West Lothian, to supplement the single consultant and part-time associate specialist. This model could be used elsewhere in the country, to help broaden access to stroke thrombolysis for eligible patients.
5.17 At the request of the National Advisory Committee on Stroke's MCN sub-group, Chest, Heart & Stroke Scotland is presently co-ordinating a programme of multi-disciplinary training in thrombolysis, based on the three Regional Planning Groups.
NHS Boards, with advice from their stroke MCNs, should consider appropriate models to facilitate access to thrombolysis for stroke patients, particularly in areas with limited medical cover.
5.18 The draft revised NHSQIS stroke standards stipulate that thrombolysis services should be aiming to treat more than five stroke patients per 100,000 population and to ensure that the door to needle time is less than one hour in at least 80% of patients treated. To meet these standards, NHS Boards will need to provide round-the-clock access to thrombolysis, if necessary with clinical advice being provided through telemedicine networks. The stroke MCNs are clear that to ensure equity of access to thrombolysis across Scotland, there will need to be a move to a regional model of service delivery.
5.19 The Scottish Centre for Telehealth is working with NHS Boards to introduce Telestroke networks which seek to develop pathways and protocols for the most effective administration of thrombolysis in each part of Scotland, to reduce delays and avoid long ambulance journeys.
5.20 There is a clear role here for the Regional Planning Groups, especially as stroke care moves towards intervention within 2 hours of diagnosis. Lessons learned from the redesign of cardiac services to meet optimal reperfusion therapy requirements could be valuable to this emerging service. Other aspects of stroke care that require a regional approach include interventional neuroradiology, neurosurgery and vascular surgery.
The Regional Planning Groups, in conjunction with the local stroke MCNs, the Scottish Ambulance Service and the Scottish Centre for Telehealth, should consider how to deliver optimal hyper-acute stroke care, including thrombolysis.
There are some examples of good practice already in place. NHS Grampian provides 24/7 face-to-face thrombolysis cover at Aberdeen Royal Infirmary ( ARI) and 24/7 thrombolysis cover for Elgin via telemedicine from ARI. In the first three months of the network's activity, 10 telestroke consultations took place, with three people being thrombolysed as a result.
NHS Lanarkshire has face-to-face thrombolysis pathways and protocols in place and a telestroke network covering all Lanarkshire acute hospitals within hours. Out-of-hours cover via telemedicine links to stroke consultants' homes is in the final planning stage.
Stroke Unit Care
5.21 In the seven years since publication of the original Strategy, access to stroke unit care has improved. In 2002 there were 31 stroke units and 583 stroke unit beds in Scotland. By 2007 this number had increased to 38 units with a total of 768 designated stroke beds. More patients are being admitted to stroke units and being managed according to agreed standards, which undoubtedly improves outcomes. However, many hospitals are still not meeting the NHSQIS standard that at least 70% of patients with stroke should be admitted to a stroke unit within the first day. The updated standards, published by NHSQIS in June 2009, include the following essential criteria:
- 60% of all patients admitted to hospital with a diagnosis of stroke are admitted to the stroke unit on the day of presentation at hospital, and remain in specialist stroke care until in-hospital rehabilitation is complete; and
- 90% of all patients admitted to hospital with a diagnosis of stroke are admitted to the stroke unit on the day of admission, or the day following presentation at hospital, and remain in specialist stroke care until in-hospital rehabilitation is complete.
5.22 Access to stroke unit care is the single most important aspect of services, and is the key to meeting many of the other NHSQIS clinical standards for stroke care. NHS Boards have struggled to meet the existing standards on a sustained basis, and the revised draft standards will present an even greater challenge.
5.23NHS Boards, in conjunction with their stroke MCNs, will need to seriously consider the aspects of service redesign required to achieve the new access target. Stroke unit beds need to be protected from other pressures, by giving them the same status as CCU beds, and by recording them on SMR data as distinct units.
A short life working group of the National Advisory Committee on Stroke should be established, to include representation from the Directors of Planning Group, to draw on NHS Boards' existing experience to explore the service and other implications of developing a HEAT target relating to stroke unit admissions.
5.24 The SSCA provides data on the performance of each hospital which admits acute stroke patients. The table below shows that, averaged over Scotland, the proportions of patients receiving care in line with current NHSQIS standards and with best evidence has improved in a number of areas between 2005 and 2007. However, there is still plenty of scope for continued improvement.
Standard of care
Admitted to Stroke unit
Admitted to Stroke unit <1 day
Swallow screened performed
Swallow screened <1 day
Brain scan performed
Brain scan within 2 days of admission
Given aspirin within 2 days of admission
Discharged on blood pressure lowering medication
Ischaemic Stroke discharged on antithrombotics
Ischaemic Stroke discharged on statins
Ischaemic Stroke in Atrial fibrillation discharged on anticoagulants
5.25 The audit loop is closed through an annual letter to NHS Boards from the Scottish Government Health Directorates drawing attention to those aspects of services where good progress has been made, and those where further progress needs to be made. That process should continue, taking account of the revisions to the stroke standards.
The Scottish Government Health Directorates should continue to highlight NHS Boards' performance in the SSCA on an annual basis and NHS Boards should provide action plans to address any shortcomings.
5.26 One very positive outcome of this process is that it has prompted consideration by NHS Boards' Directors of Planning of ways in which Boards' performance against the clinical standards could be improved. The barriers to more consistent achievement of the standards which have been identified include:
- the number of acute receiving sites in Scotland;
- the overlap between stroke medicine and medicine for the elderly;
- the comparatively under-developed nature of stroke medicine; and
- the crucial importance of admitting those who have had a stroke to a dedicated stroke unit as a sine qua non of achieving many of the other standards relating to hospital care.
5.27 Stroke units need better nursing staff levels to allow them to provide early assessment, observation, monitoring swallow screening and early activation of stroke rehabilitation. Close attention should be paid to diet and nutrition of those being cared for in stroke units, especially those with communication and swallowing difficulties. The effects of a stroke are wide ranging, and as well as the physical impact, can include cognitive and mental health problems which have a profound effect on everyday activities. Currently, only a third of stroke units have access to clinical psychology services (see paragraph 5.48).
NHS Education for Scotland should establish a method for nurses working in a stroke unit to demonstrate that they have achieved the defined level of specialist knowledge and competence by December 2011.
5.28 Imaging is a key part of stroke care, and there are constant advances, for example in MRI. Daily TIA clinics and hotlines mean that there is a need for immediate access to both brain and carotid imaging as well as other investigations such as ECG and echo. Consideration should be given as to whether duplex ultrasound, CT and MRI services can be delivered on a 24-hour basis in all hospitals admitting those who have had a stroke. NHS 24 and the SAS are currently piloting the feasibility of achieving a 55-minute call-to- CT scan time.
5.29 Expanded neuroradiology capacity will be required to allow an on-call rota in tertiary centres providing out-of-hours thrombolysis. Priority needs to be given to increasing the number of consultant radiologist PAs (Programmed Activities) and the number of radiographers to support the significant workload associated with stroke and TIA. Enhanced roles for radiographers ( e.g.CT head reporting) should also be considered as part of the solution to imaging service pressures.
The newly-established Scottish Imaging Managed Diagnostic Network, in conjunction with the SAS and NHS 24, should address the neuroradiology issues identified in this section as a matter of urgency.
Younger People and Stroke
5.30 Younger patients with stroke can have specific and complex needs, such as support for return to work. Stroke training should be offered to all disability employment workers, to ensure they understand the issues involved in working with younger people who have had a stroke and who wish to return to work. The Delivery Framework for Adult Rehabilitation was launched in February 2007 and has a focus on rehabilitation for those wishing to return to, or remain in, employment after a period of ill health.
5.31 Chest, Heart & Stroke Scotland has published work on the services available to younger people (18-49) affected by stroke, and their families and carers. Key recommendations in that report include:
- GPs should be aware that stroke can affect younger people;
- in localities where, due to population density and socio-economic circumstances, there is a relatively high incidence of younger people experiencing strokes, designated 'younger' stroke units should be created, for example by concentrating these younger people in one site in the larger cities;
- where younger people who have had a stroke are treated in wards with a mixed age profile, health professionals should be aware that being treated in close proximity to very elderly people is a major concern for younger people experiencing a stroke, and their families. They should be informed, in a sensitive manner, that the best care can be provided by admission to a stroke unit that caters for people of all ages;
- issues relating to employment should be addressed immediately following a stroke. Occupational therapists should ensure that they are aware of the previous employment history of the young person who has had a stroke, in order to address possible alternatives at an early stage;
- all younger people who have had a stroke should be visited by a stroke nurse within two days of discharge from hospital, to identify and address any difficulties and provide a timetable of what is likely to happen in terms of service input in the following weeks; and
- younger people who have had a stroke, and their families, should be offered the option of Self Directed Support which would enable them to organise their own services.
Chest, Heart & Stroke Scotland and NHS Lanarkshire have developed a service which addresses issues such as access to education and training, vocational rehabilitation, employment, family relationships and the economic impact of stroke. Chest, Heart & Stroke Scotland, in partnership with the Citizens' Advice Bureaux in Lanarkshire, provides specialist advice on benefits.
NHS Boards should adopt the model developed by Chest, Heart & Stroke Scotland and NHS Lanarkshire to help younger people deal with the wider social consequences of stroke. Access to vocational rehabilitation support should also be provided.
5.32 One specific issue affecting those under 65 discharged from hospital after a stroke is that they are not eligible for free personal care. Two forms of support can however be provided. Nursing care payments are available to care home residents who fully fund their care home costs, and people who have dementia or any other degenerative illness and who require care, and who live in their own homes, can claim Disability Living Allowance.
Early Supported Discharge
5.33 There is now reliable evidence from clinical trials that early supported discharge from stroke units can achieve not only shorter lengths of stay, but also better clinical outcomes. The National Advisory Committee for Stroke ( NACS) MCN Sub Group conducted an 'Early Supported Discharge for Stroke Survey' in April 2008 which attempted to estimate access to post-discharge stroke rehabilitation services in terms of the number of MCNs, hospital services and the percentage of the population which could access such services. The survey found that 52% of the Scottish population was covered by an Early Supported Discharge team. It also found that specialist community rehabilitation for the longer term management of stroke patients was available in seven NHS Board areas of which none were 'stroke specific'. Overall, 45% of the population was covered by a community rehabilitation team. Currently, access to specialist stroke rehabilitation services outside hospital is patchy. CHPs need to work with the stroke MCNs and local Rehabilitation Co-ordinators to make such services more available, consistent with Scottish Government policy.
5.34 The Rehabilitation Co-ordinators have been provided with a copy of the Early Supported Discharge survey results. Stroke services will be incorporated in the mapping and redesign of rehabilitation services which the Rehabilitation Co-ordinators are carrying out. Updates on this work will be monitored by the Delivery Framework for Adult Rehabilitation Implementation Group on a quarterly basis.
NHS Boards with their local planning partners must ensure that early supported discharge and community rehabilitation teams are integrated and easily accessible to assist people who have had a stroke to become as fully independent as possible.
Rehabilitation and Recovery
5.35 People who have had a stroke want above all to return to independent living. The focus of services should therefore be on empowering them and supporting them through the process of recovery. Across much of Scotland, Chest, Heart & Stroke Scotland, in partnership with local stroke services, provides a stroke nurse service which offers advice, information and support for up to 12 months following discharge from hospital.
5.36 Half of those who survive a stroke have some level of impairment:
- one-third have a communication impairment such as aphasia;
- over a third have cognitive problems and stroke is the second major cause of dementia after Alzheimer's;
- between 20-50% experience depression;
- between 60-70% experience a visual problem; and
- many rely on spouse or other family member for essential support and care, causing difficulties in turn for the carer.
With improved acute stroke care, the prevalence of those with a neurological impairment is likely to increase, with significant implications for health and social care. Up to 80% of those who survive a stroke with impairments are amenable to rehabilitation. With the right support, some degree of recovery is possible for most people. There is therefore 'life after a stroke'.
5.37 Long term care and support should include:
- access to information in suitable formats from NHS and voluntary organisations;
- access to rehabilitation, through the NHS, employers and the voluntary sector;
- access to psychological support in the community;
- secondary prevention support;
- annual check-ups through primary care;
- social care support provided by the statutory and voluntary sectors, including home care support, personal care, telecare, equipment and adaptations, supported housing and residential and nursing care;
- access to self management support;
- access to exercise through leisure services; and
- support for family and carers through the NHS, social care and the voluntary sector.
It should be provided through a multi-disciplinary team involving, as necessary:
- occupational therapy;
- speech and language therapy and communication support;
- vision support;
- dietetics support;
- psychological support;
- vocational rehabilitation; and
- long term voluntary sector support, for example through patient support groups and volunteer outreach services.
NHS Quality Improvement Scotland should consider the wider standards that could be developed to reflect the most up-to-date evidence once the revised SIGN Guideline 64 on Stroke Rehabilitation is published, and discuss options for taking this work forward with the National Advisory Committee on Stroke and the stroke Managed Clinical Networks.
5.38 Allied Health Professionals ( AHPs) are key agents in the delivery of rehabilitation services, including early discharge and outreach. They have a vital role to play in all stages of stroke patient pathway, and while some are already very skilled, all should have access to specialist training. It is particularly helpful if there is a single point of contact and ongoing support post-discharge. People should be offered specialist information and advice which is appropriate, accessible and timely, including that provided by the voluntary sector. The care plans of people who have had a stroke must include recognition of the needs of their unpaid carers.
5.39 Physiotherapy. Access to physiotherapy remains patchy. Physiotherapy at home after stroke improves outcome and increases independence. Specialist physiotherapy should be available at all stages of the patient pathway, to maximise independent functional recovery. Allowing self-referral to AHP services would enable stroke survivors to access timely and appropriate services to promote increased personal control.
NHS Boards, through their stroke MCNs, should investigate the implications of allowing self referral to AHP services by those recovering from a stroke.
5.40 'Exercise After Stroke: Physical Activity and Health' is a unique training course designed for specialist exercise instructors. It has been developed and validated through a collaboration between Queen Margaret University, Edinburgh, and the University of Edinburgh, with funding from the Scottish Government. The modular course is based around the most up-to-date and highest quality evidence available, and involves 200 hours of study comprising lectures, tutorials, practical sessions and self-directed learning. The course design may become available in due course for development in other parts of Scotland. Representatives of the leisure industry in the participating NHS Board areas are working in partnership with health colleagues to establish patient pathways into exercise and fitness training to maximise recovery for people who have had a stroke.
NHS Boards, through their stroke MCNs, should continue to work with leisure industry representatives to make best use of this new training course to improve access to exercise and fitness training for people with stroke in their area.
5.41 Occupational Therapy. The systematic review by Stroke Therapy Evaluation Programme at Glasgow Royal Infirmary (published in Cochrane Library, 2006) showed that occupational therapy ( OT) significantly reduces risk of deterioration after stroke. Those who took part in after-stroke rehabilitative therapy proved better able to perform self-care tasks and were more likely to maintain these abilities.
NHS Boards, through their stroke MCNs, should prioritise the provision of OT services for stroke rehabilitation, given the strong evidence base in this area.
5.42NHSQIS is working on an Ankle-Foot Orthoses ( AFO) Best Practice Statement which aims to provide doctors, AHPs and nurses with practical advice and guidance on the use of ankle-foot orthoses following stroke to promote a consistent, cohesive and achievable approach to care. The Best Practice Statement is expected to be published and distributed across NHSScotland by September 2009.
NHS Boards, through their stroke MCNs, should ensure implementation of the Best Practice Statement on AFO, once available.
5.43 Speech and Language Therapy and Communications support. The survey Back to a Life after a Stroke, published in December 2008 by the Royal College of Speech and Language Therapists, Speakability, Chest, Heart & Stroke Scotland and the Stroke Association in Scotland, reviewed the experience of 280 people who had communication difficulties following a stroke. The report includes the following key points:
- communication difficulties after a stroke are significant for people who have them, and act to exclude them from public services;
- communication difficulties have an overwhelming impact on the lives of individuals and their families;
- people who have had a stroke value speech and language therapy and other communication support services, but they need much more of these; and
- direct speech and language therapy and voluntary communication support services make a real difference to the things that matter to people.
5.44 The report therefore makes the following recommendations to Government:
- improve provision of speech and language therapy and voluntary communication support to services in hospital and the community;
- raise healthcare professionals' awareness of the impact stroke can have on communication;
- improve the quality and communication accessibility of information;
- raise public services' awareness of the impact stroke can have on communication; and
- collect incidence and prevalence figures of people who have communication difficulties after a stroke, and data on current provision of communication services and needs of people with communication difficulties after stroke, to inform service planning and evaluation.
5.45 The Volunteer Stroke Service operates across 90% of Scotland, offering communication support through group activities, support to people in hospital, outreach one-to-one support and long term maintenance. It operates with funding from the NHS and in partnership with local speech and language therapy services, and makes extensive use of trained volunteers. Its effectiveness has been demonstrated by independent, peer-reviewed research.
NHS Boards, through their stroke MCNs, should ensure that provision of speech and language therapy services is included in the mapping exercise being undertaken by the Rehabilitation Co-ordinator in each NHS Board, and that services are supported appropriately, including voluntary sector communication support services.
The Stroke Manual by Connect - The Communication Disability Network
The stroke manual published by Connect is a useful tool which can support people with stroke and aphasia in asking questions, having discussions and conversations, and making choices and decisions. It includes easy-to-understand information on all aspects of life following stroke, from the early days, to picking up the threads months and even years after the event. The manual has been developed in direct response to the experiences and needs of people living with stroke and aphasia and validated by people who have first-hand experience of stroke and aphasia, as well as medical and social services experts.
Chest, Heart & Stroke Scotland has developed a range of aphasia-friendly publications, including:
- Conversation support book;
- Stroke journey (three booklets: Early days, Rehabilitation after stroke, Moving on);
- Aphasia identity card.
5.46 Support for visual problems. Visual impairment can affect up to 70% of stroke survivors, but many do not have their vision adequately assessed in hospital, causing significant problems for recovery and quality of life. Routine visual assessment should be carried out for all those who have had a stroke as soon as possible after the stroke. Where problems are identified, appropriate therapeutic support should be available.
My Stroke Book
NHS Greater Glasgow & Clyde developed a patient information resource called My Stroke Book to provide information and support to patients who have had a stroke and their carers. A large print version has been developed for the visually impaired and the book is being translated into Punjabi, Urdu and Cantonese in audio format. Every patient is given one of these books either just after admission to the hospital Stroke unit or - for patients whose stroke was some time ago - from their practice nurse through the Chronic Disease Management programme.
The Chief Scientist Office funded a randomised control trial on a Stroke Workbook based on the Heart Manual. The study showed modest functional improvement and maintenance of confidence amongst those who participated.
NHS Boards, through their stroke MCNs, should encourage the use of the Stroke Workbook.
5.47 Dietetics. The expertise that dieticians bring to stroke care is set out in detail in The Value of Nutrition and Dietetics for Stroke Survivors (December 2007). To maximise the effectiveness of rehabilitation, people who have had a stroke should have a nutritional assessment and access to advice and support in meeting their nutritional needs.
5.48 Psychological support. It is important to recognise the impact that the cognitive effects of stroke can have on the success of early supported discharge and community integration. Those from deprived areas who have had a stroke experience greater emotional impact and can require support for longer. Clinical Psychologists are ideally placed to provide evidence-based interventions in response to the emotional impact of stroke, but, as noted previously, currently only a third of stroke units have access to clinical psychology services. The 'Guide to delivering evidence-based Psychological Therapies in Scotland' (Scottish Government, December 2008), known as 'The Matrix', has been developed to help NHS Boards provide such interventions in key Government priority areas.
5.49 Vocational rehabilitation has been shown to be highly effective in supporting individuals to stay in, or return to, employment, voluntary or educational activities. The Delivery Framework for Adult Rehabilitation recommends that this is underpinned by integrated vocational rehabilitation services, and a number of programmes are under way in Scotland. A Vocational Rehabilitation pilot in Tayside has been established in collaboration with 'Healthy Working Lives' and was launched February 2007. Further funding has been provided by the Health Improvement Directorate and pilots are now also under way within NHS Lothian and NHS Borders.
5.50 People moving into care homes should have access to the full range of AHP services. Support systems and health monitoring for people in care homes or long term care institutions who have had a stroke must be addressed, with access to stroke services for re-assessment and further rehabilitation. The National Care Standards relating to care homes require providers to ensure that residents continue to receive healthcare services that meet their needs, and that these should be reviewed regularly, and at least every 6 months. Care homes need access to specialist rehabilitation services and training.
5.51 The Chief Health Professions Officer has also been working closely with the Care Commission to establish an AHP Consultant to address the need to improve meaningful activity in care homes for adults of all ages as well as supporting access to rehabilitation and early identification of dementia. This appointment is being funded for two years.
5.52 There are specific issues for stroke patients in palliative care, including issues over nasogastric or pegylated feeding and when to withdraw these. The Scottish Government has provided funding of £40,000 to enable the University of Glasgow, with assistance from NHS Quality Improvement Scotland, to develop best practice statements on palliative care, including symptom control following severe stroke, and pain management post-stroke. These complement the work of the STARS e-learning modules. The role of palliative care in end of life stroke care should be considered further by the stroke MCNs in conjunction with the palliative care MCNs, taking account of the content of these best practice statements.
NHS Boards' stroke and palliative care MCNs should collaborate to implement the objectives in NHS Boards' Living and Dying Well Delivery Plans.
5.53 About 500 patients each year undergo carotid endarterectomy to treat narrowing of their carotid artery and reduce the risk of subsequent stroke. If this operation is performed within a week or two of a TIA or minor stroke, there is very good evidence that at least 20 strokes would be avoided for every 100 patients treated. Currently most operations in Scotland are not done within the optimal waiting time of 14 days described in SIGN guideline 108. The patient pathway to carotid surgery needs to be greatly speeded up, to achieve reduced delays in:
- patients seeking medical help (the FAST campaign will help here);
- access to specialist assessment and appropriate investigation;
- referral to surgeon;
- assessment by surgeon; and
- time to surgery.
In order to meet the revised clinical standard that 80% of patients undergoing carotid endarterectomy should have the operation within 14 days of their stroke. The Scottish Stroke Care Audit will monitor delays in the patient pathway.
Reducing delays to carotid surgery in Lothian
In Lothian the stroke physicians, radiologists and vascular surgeons have met regularly over the last five years with the aim of reducing delays in patients accessing carotid endarterectomy. Changes to services have included:
- TIA Hotline and reduction of wait for neurovascular clinic
- same day Duplex scanning and confirmatory scan by another radiologist
- faxed referral to surgery with agreed information
- involvement of more surgeons to spread the load - avoidance of referral to named surgeon
- booking of date for surgery on receipt of referral, even before surgical assessment
- continuous monitoring of delays through audit and feedback to staff.
5.54 Similar, significant service redesign of the type undertaken in NHS Lothian will have to take place at most regional centres if the required reductions in delays to carotid surgery are to be achieved.
NHS Boards and Regional Planning Groups should urgently implement the kind of service re-design undertaken in NHS Lothian and elsewhere to reduce the current unacceptable delays in time to carotid endarterectomy for eligible patients.
5.55 Currently there are too few nursing and AHP staff to support acute stroke unit care, including stroke rehabilitation, which means that many units struggle to maintain adequate staffing levels. In addition, there is recognition of the difficulty of attracting and retaining staff with the appropriate skills and knowledge in many areas. These issues also apply to the numbers of staff who provide longer-term care and support in the community.
5.56 The relatively recent recognition of stroke medicine as a subspecialty for medical training purposes, and the establishment of specialty registrar posts should help to address the shortage of stroke specialists in Scotland. However, there is a clear lack of higher level specialist training for nurses and therefore of a career path which would help with retention. The lack of higher level training is being addressed by:
- NHS/Chest, Heart & Stroke Scotland stroke training programmes (see paragraph 2.12);
- phases 2 and 3 of STARS (see below), which incorporate specialist areas including thrombolysis; and
- the national programme of thrombolysis training being developed by Chest, Heart & Stroke Scotland.
5.57 The Stroke Association has already provided stroke awareness training to the social care workforce of one local authority and plans to offer this Scotland-wide. It also hopes to support stroke training in primary care, working with Education for Health, a UK education charity which already has an Open University-accredited training programme for stroke in primary care.
Stroke Training and Awareness Resources ( STARS)
5.58 In 2002 the CHD and Stroke Strategy identified the need to provide a set of Core Competencies for professionals working with people with stroke. NACS commissioned NES to take this work forward and the Stroke Core Competencies were published in April 2005.
5.59 In May 2007 funding was secured from the Scottish Government Health Directorates to develop an e-learning training resource based on the Competencies. The key stakeholders involved in the project are Chest, Heart & Stroke Scotland, the University of Edinburgh, NHS Education for Scotland as well as a national steering group which includes expert stroke clinicians.
5.60 All NHS Boards in Scotland were asked to select members of the community and acute healthcare and social care teams to participate as case authors, with responsibility for the content and design of the website. Twelve NHS Boards and a wide range of professions were represented.
5.61 The website ( www.Strokecorecompetencies.org) provides a multidisciplinary resource which focusses on a wide range of core knowledge and skills required by all staff delivering stroke care. It was launched in May 2008 and is freely available to all on the worldwide web. The project, is continuing, with further support from the Scottish Government, to develop training resources aimed specifically at staff working in acute stroke unit care. These modules are being launched in September 2009.
NHS Boards should ensure that their stroke MCN is providing in-service training opportunities such as STARS to staff involved in stroke care. NHS Boards should also ensure that staff have access to on-line training through their hospital IT systems by March 2010. This may require reconfiguration of security settings and installation of certain computer software on those computers used by staff.
Scottish Stroke Research Network ( SSRN)
5.62 The SSRN is funded by the Chief Scientist Office and was set up to complement developments in the rest of the UK. It works through a devolved four regional structure and has 21 active research sites with plans to develop a further three to four sites. Recruitment to trials has risen in 2007-08 by 50% over the previous two years. Scotland is currently the second highest recruiting region in the UK (with over 500 participants per year) despite having a relatively more demanding portfolio of studies. The Network will continue to consolidate and build upon this progress and begin focussing on supporting activities such as development of the study portfolio, staff training, and service development. Renewed funding of £1.93m has been agreed for three years from April 2009. The SSRN has a key role in training staff to participate in clinical research.
CSO should be able to demonstrate increasing year-on-year recruitment to clinical stroke studies through the SSRN.
5.63CSO has also allocated £15m a year to support the development of a 4-Board:4-University Scottish Academic Health Sciences Collaboration. This was launched on 17 June 2009 by the Cabinet Secretary, and aims to establish a world-leading platform of research infrastructure to attract external investment and economic development, strengthen the evidence-based culture in NHS and stimulate recruitment, training and retention of staff. The Collaboration is key to Scotland's ability to remain internationally competitive and involves the creation of some 250 new posts and infrastructure to support imaging, biorepositories and informatics. In addition, it will support clinical research facilities and functions, e.g. research nurses, pharmacy, governance, monitoring. Many of the Collaboration's activities will be relevant to stroke research.
5.64CSO also funds the Stroke Research Programme at the Nursing, Midwifery and Allied Health Professionals Unit at Glasgow Caledonian University.
5.65 Opportunities for further research in relation to stroke include:
- public health research into stroke epidemiological research;
- health economics research into the non- NHS costs of stroke; and
- social research such as that proposed for FAST and into the needs and experiences of those who survive a stroke.