Commissioning Support for London. Stroke rehabilitation guide: supporting London commissioners to commission quality services in 2010/11

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1 Commissioning Support for London Stroke rehabilitation guide: supporting London commissioners to commission quality services in 2010/11

2 Contents Executive summary 4 1 Introduction Healthcare for London Rehabilitation The rehabilitation pathway 10 2 The case for change London context Quantity of need Benefits of effective rehabilitation The future of stroke rehabilitation in London Financial considerations 16 3 Inpatient rehabilitation recommendation Introduction Current services Current gaps in service Service description Examples of delivery Benefits Priorities for development Performance standards 23 4 Community rehabilitation recommendation Introduction Current services Current gaps in service Service description Examples of delivery Benefits Priorities for development Performance standards 30 5 Early supported discharge recommendation Introduction Current services Current gaps in service Service description Examples of delivery Benefits Priorities for development Performance standards 36 2 Healthcare for London

3 6 Support structures recommendation Introduction Current services Current gaps in service Service description Example of delivery Benefits Priorities for development Performance standards 41 7 Defined review recommendation Introduction Current services Current gaps in service Service description Example of delivery Benefits Priorities for development Performance standards 45 Appendix 46 Stroke rehabilitation guide 3

4 Executive summary Every year over 6,000 Londoners are left with an impairment following a stroke. These impairments can improve over many years, so people need both a focus on rehabilitation to help them improve and recover, and support to help them manage the disabling factors caused by a stroke that may continue in the long-term. Effective rehabilitation, initiated at the beginning of their treatment, can improve their opportunities to re-engage with their lifestyle, their family and friends. However, there is a wide variation in the availability of rehabilitation and community services. Some areas have early supported discharge services, responsive community stroke rehabilitation teams and vocational rehabilitation services. Other areas have no dedicated community stroke service. On average, each primary care trust (PCT) spends 1.7 million per annum on strokerelated community care and rehabilitation. However, the average disguises a wide variation in spending between boroughs. Due to the shortcomings of rehabilitation services in some areas, the experience of patients and carers can be one of frustration, isolation and deterioration of their condition. Reduced dependency of individuals following stroke will result in an increased ability for them to re-engage with the world, both personally and economically. The benefits of investment in stroke rehabilitation are clear. Better rehabilitation will result in improved outcomes for stroke survivors, reducing their dependency on both their carers and on statutory services. Improved stroke rehabilitation services across London will also reduce the inequalities of access and quality currently experienced by some Londoners. The centralisation of acute stroke services was a key proposal of Lord Darzi s 2007 report Healthcare for London: A Framework for Action. Following two public consultations, Consulting the Capital and The shape of things to come, a joint committee of London s PCTs decided upon the future model of London s acute stroke care in July Although the acute pathway was the emphasis of these consultations, Healthcare for London remained aware of the importance of the non-acute parts of the stroke pathway. This guidance should inform PCTs commissioning intentions for 2010/11. Improved rehabilitation services and reduced inequalities of access across London will help drive the acute stroke system and provide better outcomes for patients. It is intended that further guidance on long-term care and support to deal with ongoing disability following rehabilitation for stroke, be published in 2010 to inform the commissioning rounds for 2011/12. This work will be taken forward by the new London clinical director for stroke, in partnership with the London cardiac and stroke networks and other stakeholders, particularly social care and the voluntary sector. 4 Healthcare for London

5 In the Stroke strategy for London, Healthcare for London published five recommendations for London PCTs in commissioning stroke rehabilitation services. Subsequent engagement with clinicians and patients has allowed these recommendations to be developed and refined into the detailed guidance presented here, which supersedes those previously published. Each of them is expanded upon in this guidance. Inpatient rehabilitation Every PCT should provide access to inpatient rehabilitation for all stroke patients for whom such a service is appropriate. This inpatient rehabilitation should start as soon as possible and continue for as long as is required by the needs of individual patients. The new pan-london system for acute stroke care will ensure inpatient rehabilitation in the acute setting will begin as soon as is appropriate for patients. Following their stay in a stroke unit, a small proportion of stroke survivors may need continuing specialist inpatient rehabilitation in the medium term. PCTs should provide access to non-acute inpatient rehabilitation for those survivors with a high level of dependency, who would not benefit from further acute inpatient input but for whom discharge into the community at that stage is not appropriate. This care is delivered in dedicated non-acute inpatient facilities that meet the inpatient rehabilitation performance standards. Generic settings such as intermediate care beds are therefore not appropriate for this continuing specialist rehabilitation. Further specialist inpatient care is given to those for whom it is clinically appropriate. This should not be seen as an alternative to care at home from an effective community rehabilitation team. Community rehabilitation The existence of an effective community rehabilitation team with specialist stroke skills should be seen as a priority. Commissioners should ensure access to a community rehabilitation team is available to all those for whom it is clinically appropriate. Services should meet the performance standards for community rehabilitation, where this is appropriate to the needs of the stroke survivor. Community rehabilitation should be a simple, coherent service that is easy to navigate. This service should have a single point of entry, no waiting lists and be accessible to all stroke survivors. It should be designed around the needs and goals of the individual, so the stroke survivor is assessed by a specialist stroke multi-disciplinary team who will determine the best use of the team s resources. Community rehabilitation teams should also assist appropriate stroke survivors to access vocational rehabilitation. Stroke rehabilitation guide 5

6 Early supported discharge Where effective community rehabilitation teams are in place, early supported discharge (ESD) services should be offered. ESD services should have appropriate staffing levels to provide ESD for suitable patients. Services should meet the performance standards for ESD in community rehabilitation, where this is appropriate to the needs of the stroke survivor. The transition into ESD services from the acute setting should be seamless. While initial assessment of the stroke survivor is carried out by qualified professionals, some care may be delivered by therapy assistants under the supervision of a qualified professional. Support structures A stroke survivor should have access to a named support worker who takes full ownership of the individual s case. The role is fulfilled by an existing member of the multi-disciplinary team. Support workers operate on an in-reach basis, first visiting survivors during their acute inpatient rehabilitation in the stroke unit. Key contacts will also be designated in each setting accessed by stroke survivors. This will allow survivors to connect easily with the services they need. Defined review Every stroke survivor should have access to rehabilitation reviews at defined points during the first 12 months following their stroke. Stroke survivors should have their rehabilitation needs reviewed at three, six and 12 months following their stroke. The reviews will be multifaceted and based upon the individual needs of the stroke survivor. 6 Healthcare for London

7 Introduction 1.1 Healthcare for London The centralisation of acute stroke services was a key proposal of Lord Darzi s 2007 report Healthcare for London: A Framework for Action 1. Following two public consultations, Consulting the Capital 2 and The shape of things to come 3, a joint committee of London s PCTs decided upon the future model of London s acute stroke care in July Although the acute pathway was the focus of these consultations, Healthcare for London remained aware of the importance of the non-acute parts of the stroke pathway and this Stroke rehabilitation: supporting London commissioners to commission quality services in 2010/11 addresses these crucial areas. Due to the variation in availability of stroke rehabilitation and approaches to service provision, it was judged impossible to have a single central model of rehabilitation. Additionally, stroke rehabilitation outside the acute setting is not covered by the 23m of investment per annum that was identified by London s PCTs. Thus, each PCT needs to commission locally appropriate services, and the level of investment required will vary widely. Improved rehabilitation services and reduced inequalities of access across London will help drive the acute stroke system and provide better outcomes for patients. Impairments from a stroke can improve over many years, so people need both a focus on rehabilitation to help them improve and recover, and support to help them manage the disabling factors caused by a stroke that may continue in the long-term. This guidance focuses only on rehabilitation. It is intended that further guidance on long-term care and support to deal with ongoing disability following rehabilitation for stroke, be published in 2010 to inform the commissioning rounds for 2011/12. This work will be taken forward by the new London clinical director for stroke, in partnership with the London cardiac and stroke networks and other stakeholders, particularly social care and the voluntary sector. This guidance will need to be reviewed in the light of new evidence, for example the work of National Institute for Health and Clinical Excellence (NICE) to produce a joint clinical and social care guideline on the long-term rehabilitation and support of stroke patients, expected to be published in April The Healthcare for London stroke project team has worked with mental health specialists to develop joint guidance on the effects of stroke on the mental health of survivors and their carers. As this aspect of care crosses the entire acute and post-acute stroke pathway, it will be developed and published separately. 1 Darzi A., Healthcare for London: A Framework for Action, 2007, Publications/A-Framework-for-Action/aFrameworkForAction.pdf. 2 Consulting the Capital, Healthcare for London, The shape of things to come, Healthcare for London, Stroke rehabilitation guide 7

8 1.2 Rehabilitation The aim of rehabilitation for stroke survivors, set out in the National Stroke Strategy is: For those who have had a stroke and their relatives and carers, whether at home or in care homes, to achieve a good quality of life and maximise independence, well-being and choices. 4 Rehabilitation is defined by the World Health Organisation as a process aimed at enabling people to reach and maintain their optimal physical, sensory, intellectual, psychological and social functional levels. 5 Rehabilitation provides disabled people with the tools they need to attain independence and self-determination. Ensuring the correct type and levels of support for people who have experienced stroke, their family and carers, is a key area of challenge for commissioners and providers. Commissioners should consider engaging a wide range of provision, including provision from the third sector, to meet the needs of the local population. Services should also be appropriate for all ages; one quarter of people who have a stroke are under 65 and may have particular needs. Stroke rehabilitation should begin as soon as possible after a person has a stroke, and continue for as long as is clinically appropriate, to ensure the best possible recovery. It should be provided in a variety of settings, including in acute and community hospitals, outpatient departments and a person s home. There are currently significant inequalities across London in the quantity and accessibility of rehabilitation services offered to stroke survivors. Community stroke services are configured differently in each borough, mostly delivered by generic teams. This inequality of access to services results in variation in patient experience and outcomes. The reduction of health inequalities across London was one of the five key principles of A Framework for Action. Inequalities of access to stroke rehabilitation must be tackled and reduced through intelligent commissioning. In the Stroke strategy for London, Healthcare for London published five recommendations for London PCTs in commissioning stroke rehabilitation services. 6 Subsequent engagement with clinicians and patients has allowed for these recommendations to be refined. The refined recommendations supersede those previously published and each of them is expanded upon in this guidance. 4 National Stroke Strategy, Department of Health, 2007, p World Health Organisation, 6 Stroke strategy for London, Healthcare for London, See appendix for original recommendations. 8 Healthcare for London

9 The recommendations are: Every PCT should commission inpatient rehabilitation that is available for all stroke patients. This should start as soon as possible and continue for as long as required. This service must meet all of the performance standards. Every PCT should commission a community rehabilitation service for stroke patients, delivered by staff with specialist stroke skills. Service configuration should be locally determined and the service must meet all of the performance standards. Every PCT should commission an early supported discharge service for people who would benefit. This service should include staff with specialist stroke skills and must meet all of the performance standards. Everyone who has had a stroke, and their carers, should have a support worker such as a family support worker or community matron to provide navigation and advocacy a link with the inpatient and community rehabilitation teams and other care providers a designated person in each setting who is the key contact for the patient and carer whilst in that setting, such as a therapist, social worker or nurse. For the first 12 months following stroke, all people who have had a stroke and their carers should have a defined review programme with assessment of ongoing medical, social and emotional needs as, both as an inpatient and in the community. This guidance will address each of these recommendations in turn, further describing the recommendation, outlining the current gaps in services across London and, through examples of service delivery, describing the types of services that should be commissioned. This guidance aims to assist PCTs in commissioning services that are easy to navigate and that respond to patient and carer needs. The document also aims to provide clinically appropriate and realistic guidance. This guidance aims to improve the quality and effectiveness of the stroke rehabilitation and community stroke care delivered across London. In so doing, it aims to support the reduction in inequalities of access to rehabilitation and community stroke services provided across London. Stroke rehabilitation guide 9

10 1.3 The rehabilitation pathway Inpatient rehabilitation begins upon acute admission. Currently this rehabilitation may take place in a dedicated stroke unit or a general medical, neurological or care of the elderly ward. In the new acute stroke system for London, stabilisation of patients will occur in the hyper-acute stroke unit (HASU). Whilst the patient is being medically stabilised, early rehabilitation will begin on the HASU, where the patient will usually remain for the first 72 hours. Rehabilitation will then continue on a dedicated stroke unit, staffed with individuals with specialist stroke skills. Some stroke survivors may require very little rehabilitation following discharge from the acute setting. Some stroke survivors will be assessed as not likely to benefit from further rehabilitation after their stroke unit stay, and they will need to be cared for in a long-term care setting. For those that do require further rehabilitation, this may be delivered in a variety of ways (see figure 1). Patients should be routinely assessed at every stage of the pathway to see if they are continuing to benefit from rehabilitation, in whichever setting it is being delivered, or whether another course of action is required. As such, staff in the various settings should work together to ensure that transition between services is smooth. However, it is often at the boundaries between these settings that stroke survivors can experience difficulties. Community rehabilitation team Acute setting ESD Stroke Stroke HASU SU Medium term stroke inpatient rehabilitation No rehabilitation Figure 1: Options for initial rehabilitation following acute stroke care 10 Healthcare for London

11 Length of stay in the new stroke units will vary. Patients are discharged when medically stable, and when they are assessed as being sufficiently independent to be at home. 7 As a result, the timing of discharge from hospital is often determined by the level of support available at the patient s home for any functional disabilities. 8 The average length of stay is expected to be 20 days, but up to one-third of patients will not be able to be safely discharged home by this stage, and will require inpatient rehabilitation for more than four weeks following their stroke. Ideally, this should be given on the stroke unit. If the patient is transferred to another setting for continuing inpatient rehabilitation, commissioners should ensure this meets the standards for inpatient rehabilitation. A small number of stroke survivors will need specialised inpatient rehabilitation such as neurorehabilitation. Community stroke rehabilitation services cater for those stroke survivors who are able to return home following inpatient rehabilitation, either from the stroke unit or at a later stage from a specialist stroke inpatient unit. Further specialist inpatient care is given to those for whom it is clinically appropriate. It is not an alternative to community care. Some stroke survivors may be eligible for early supported discharge (ESD) into the community from the acute setting. Where appropriate, ESD allows stroke survivors to be discharged into the community earlier but with an equivalent level of support as that received in the acute setting. 7 Stroke strategy for London, op. cit. 8 Young J. and Forster A., Rehabilitation after stroke, British Medical Journal, 334, Stroke rehabilitation guide 11

12 The case for change 2.1 London context Every year over 6,000 Londoners are left with an impairment following a stroke. 9 Effective rehabilitation, initiated at the beginning of their treatment, can improve their opportunities to re-engage with their lifestyle, their family and friends. In London, there are examples of good practice being implemented such as ESD services, responsive community stroke rehabilitation teams and vocational rehabilitation services. However, there is wide variation in the availability of rehabilitation and community services, with some areas having no dedicated community stroke service. During their hospital stay, patients have access to on-call help and care; however, on discharge they have to adjust suddenly to the impacts of the stroke on their life at home. More coordinated services, including support services in hospital, in the home and in the community, would help people access the right services at the right time. A key focus of both the National Stroke Strategy 10 and Stroke strategy for London 11 is the provision of rehabilitation services for stroke survivors. Patients describe rehabilitation services as vital to their long-term wellbeing and key to living as active a life as possible after stroke. Patient engagement has shown rehabilitation is often a neglected part of the stroke pathway, and this is an area where stroke survivors and their carers feel they have been let down the most. This is supported by evidence from the National Audit Office which reported around only half of patients receive rehabilitation services that meets their needs in the first six months after discharge, falling to around a fifth of patients in the six to twelve months after discharge. 12 In addition, the 2008 Sentinel Audit showed almost a quarter of stroke units in London (23%) had no access to community therapy services for stroke patients being discharged from their facilities. 13 There are some examples of good practice in London and many stroke survivors report positive experiences. However, some stroke survivors and their carers are dissatisfied with the current service provision and have highlighted areas for improvement. Due to the shortcomings of rehabilitation services in some areas the experience of patients and carers can be one of frustration, isolation and deterioration of their condition. I consider that the minimal help I was given was entirely counter productive and very stressful. I have been given no advice, therapy or any aftercare whatsoever. A stroke survivor 9 Stroke strategy for London, op. cit. 10 National Stroke Strategy, op. cit. 11 Stroke strategy for London, op. cit. 12 Reducing brain damage: faster access to better stroke care, National Audit Office, National Sentinel Audit, Royal College of Physicians, Healthcare for London

13 The stroke rehabilitation pathways across London are complex. This complexity can lead to the development of multiple queues throughout the pathway and waiting lists may be long. Commissioners should ensure there is a simple, coherent service for their population that is easy to navigate. This service should have a single point of entry, have no waiting lists and be accessible to all stroke survivors, including those that have not been admitted to an acute setting. A simple pathway for patients will also make it easier for commissioners to monitor the quality of service provision. 2.2 Quantity of need Stroke is the most common cause of adult disability in the capital. 14 Healthcare for London has produced a London-wide estimate of the quantity of need using extrapolated data from the south London stroke register. The model shows that of the 11,000 people who have a stroke in London each year, 7,300 of those who survive are left with a disability. As stated in the Stroke strategy for London, more than 6,000 of these people are left with an impairment following an acute admission for stroke. In addition to this, however, the model allows for the 1,000 people a year who present with a stroke to a non-acute setting. Over half of these 7,300 stroke survivors are currently left dependent or moderately disabled. The London-wide need for effective stroke rehabilitation services is clear. Figure 2 shows the figures per year for the current configuration of stroke services. Presenting in a non-acute setting 1, 052 people 46 % mild disability (3387 people) 14 % moderate disability (1030 people) Stroke unit 6,311 people 40 % severe disability (2945 people) year one year two year three End of life care Figure 2: Estimated current annual London-wide stroke disability profile 14 Stroke strategy for London, op. cit. Stroke rehabilitation guide 13

14 The model is able to show the levels of disability amongst people who have had a stroke but, because the needs of individuals for rehabilitation vary widely within each group, it does not predict the capacity and capability of the services they will require. The introduction of HASUs and stroke units as laid out in the Stroke strategy for London is expected to change the outcome of people who have had a stroke. Some clinical leaders in the London stroke community believe there will be fewer deaths following a stroke and there will be an increased number of stroke survivors with mild disability or limited therapy needs. The impact of this decrease in mortality may mean the number and profile of patients requiring rehabilitation can be expected to stay broadly similar. The continuing high level of need for stroke rehabilitation across London is clear. At a local level, commissioners must establish the stroke rehabilitation needs of their local populations, derived from the best available evidence. 15 However, accurate activity and outcomes data based on current services do not exist. Data is not collected in a way that accurately allows services to stroke patients to be identified separately as services may be delivered by generic teams. Commissioners should work with the five London cardiac and stroke networks to build upon the work already carried out on assessing need. Evidence on the quantity of need in their population is available from primary care disease registers and public health reports. Aspects of need may be hidden or underestimated, however, such as the stroke rehabilitation needs of those residing in nursing homes. Further guidance on assessing the needs of populations for stroke rehabilitation is provided in the Department of Health s Improving stroke services: a guide for commissioners Benefits of effective rehabilitation services Rehabilitation after stroke works. Specialist coordinated rehabilitation, started early after stroke and provided with sufficient intensity, reduces mortality and long-term disability. 17 National Stroke Strategy The new acute stroke system for London outlined in the Stroke strategy for London will facilitate the improvement of rehabilitation services for stroke survivors. Rehabilitation will begin on the HASU and continue throughout their stay in a stroke unit. The 2008 Sentinel Audit 18 reported that only 58% of stroke patients in London spent 90% of their time as an inpatient on a dedicated stroke unit and the performance of individual units against this marker ranged from 95% to as low as 21%. Stroke patients who are not treated on 15 National Clinical Guidance for Stroke, Royal College of Physicians, 3rd Edition, Improving stroke services: a guide for commissioners, Department of Health, National Stroke Strategy, op. cit. 18 National Sentinel Audit, Royal College of Physicians, Healthcare for London

15 dedicated units get worse access to rehabilitation. These new services will have to meet exacting performance standards so that rehabilitation needs are addressed in a responsive timescale. For these changes to acute stroke care to deliver their full benefit, good rehabilitation services must be in place across London. Further inpatient rehabilitation capacity and an effective community rehabilitation service will allow the timely discharge of patients from the new stroke units, which will, in turn, allow the appropriate discharge of patients from HASUs. Rehabilitation services will be crucial to the success of the new acute stroke system but this is clearly not the full extent of the benefits it will offer. Effective rehabilitation that starts as soon as possible, and lasts as long as is clinically appropriate, will improve the quality of life of stroke survivors. Studies show that multi-disciplinary rehabilitation is beneficial to patients with brain damage from stroke. A review of 16 studies found that, as a whole, patients with moderate to severe brain injury who received more intensive rehabilitation had earlier improvements. 19 Appropriately rehabilitated stroke survivors will also experience reduced dependency in the longer term allowing them to re-engage as fully as possible with their families, friends and lifestyles. This reduced dependency will also lessen the burden on carers and provide economic benefits for both stroke survivors and society. 2.4 The future of stroke rehabilitation in London Rehabilitation for stroke survivors will begin on day one and continue while the ability to benefit remains, and as long as there are realistic goals. Rehabilitation and community stroke services will be built around the needs of the stroke survivor and their family. As a result, commissioners will need to consider engaging a wide range of provision, including provision from the third sector, to meet the needs of the local population. Services should also be appropriate for all ages; a quarter of people who have a stroke are under 65 and may have particular needs. The process of transition between services will be managed proactively and all healthcare providers forge close links with social services so patients do not feel abandoned when one service ceases to be beneficial. In order for all Londoners to have access to appropriate and effective rehabilitation services, commissioners must follow the five recommendations on inpatient rehabilitation, community rehabilitation, ESD, support workers and designated persons and defined reviews described in sections three to seven. ESD allows the acute length of stay for some patients to be shortened but is not viewed as a replacement for effective community services. An effective community rehabilitation team is beneficial for all stroke survivors able to return home following 19 Turner-Stokes L, Nair A, Sedki I, Disler PB, Wade DT., Multi-disciplinary rehabilitation for acquired brain injury in adults of working age, Cochrane Database of Systematic Reviews, 2008, Issue 2. Art. No.: CD Stroke rehabilitation guide 15

16 discharge and requiring rehabilitation. The development of such a team is seen as a priority. Changes to the provision of community services in London will provide the opportunity for these community stroke services to be arranged around emerging polysystems. 2.5 Financial considerations London spends almost 140 million a year on healthcare relating to stroke services, including approximately 55 million on rehabilitation and community care services (excluding any social services costs). 20 On average, each PCT therefore spends 1.7 million per annum on stroke-related community care and rehabilitation. This figure is an average; in reality there is wide variation in spending between boroughs. The level of investment required will vary widely between PCTs, so cannot be a shared investment decision. Each PCT must determine its own investment and work closely with social services. Work will need to be undertaken by PCTs to estimate the change in investment, which will be required to meet the recommendations and performance standards contained in this guidance. This investment is likely to be different for each PCT according to the size of the gap between existing services and those proposed here. The benefits of making this investment are clear. Better stroke rehabilitation will result in improved outcomes for stroke survivors, reducing their dependency on both their carers and on statutory services. Improved stroke rehabilitation services across all of London will also reduce the inequalities of access and quality currently experienced by some Londoners. Estimating the financial benefits of improved rehabilitation is difficult because there is little evidence to support rigorous cost/benefit analysis. 21 For example, if a patient s length of stay is shortened, the cost of that bed does not disappear; however, the availability of that bed could contribute to the ability to treat more patients with the same number of beds, and to avoid the need for investing in additional infrastructure. In addition to the more efficient use of resources, improved care can also help the system to avoid costs of delivering care that would not be needed, if appropriate rehabilitation services were provided. For example, effective community-based stroke rehabilitation services can help to prevent readmissions to acute care. Alternatively, a stroke survivor could achieve sufficient functional gains with admission to a care home. 22 Stroke rehabilitation brings wider economic benefits. The National Audit Office estimate that stroke costs the country 7 billion every year. 23 While 1.8 billion of this is the wider economic cost of stroke (including lost income due to morbidity and the costs of benefits for stroke survivors), it is estimated 1.7 billion is spent on community costs, which includes nursing home care for stroke survivors. 24 It can be inferred, by extension, that current systems of stroke rehabilitation already cost London s NHS a considerable amount 20 Stroke strategy for London, op. cit. 21 Consensus Panel on the Stroke Rehabilitation System Time is Function, Heart and Stroke Foundation of Ontario, Ibid. 16 Healthcare for London

17 each year. Investment by PCTs now in efficient well-designed rehabilitation services will not only yield benefits for patients and the wider economy, but will lead to savings for commissioners in the longer term. In acceptance of the financial constraints faced by some PCTs, this guidance for 2010/11 seeks to outline the priorities for action. This is not with the intention that commissioners should do the minimum required. PCTs should seek innovative solutions to the recommendations and performance standards outlined here. Commissioners should also review their current commissioning arrangements in the light of this guidance, and assess whether current expenditure on stroke rehabilitation is directed appropriately towards efficiently delivered services. It may be that some investment can be redirected towards commissioning more suitable services for their populations. In addition, the experience in some London PCTs suggests there may be scope for cost savings in simplifying and redesigning existing processes to ensure that only effective and efficient treatment is given. To support PCTs in developing a business plan for the provision of stroke rehabilitation, Healthcare for London is undertaking further work on costs and benefits, invest-to-save approaches, and best practice in commissioning. This will be published separately. 23 Reducing brain damage: faster access to better stroke care, National Audit Office, Ibid. Stroke rehabilitation guide 17

18 3 Inpatient rehabilitation Recommendation 1 Every PCT commissions inpatient rehabilitation that is available for all stroke patients. This should start as soon as possible and continue for as long as required. This service must meet all of the performance standards. 3.1 Introduction The National Audit Office sets an expectation that the quality standards of the National Service Framework for long-term conditions should inform the commissioning of postacute stroke services. 25 Quality Marker 4 of the National Service Framework (early and specialist rehabilitation) requires that people with long-term neurological conditions, who would benefit from rehabilitation are to receive timely, ongoing, high-quality rehabilitation services in hospital or other specialist setting to meet their continuing and changing needs. 26 When ready, they are to receive the help they need to return home for ongoing community rehabilitation and support. This is because people who suddenly become disabled as a result of a neurological condition may initially be unable to manage safely at home and may need the services of a specialist inpatient unit to help them make the best possible recovery. Timely, good quality rehabilitation offers stroke survivors the chance to achieve goals for independent living. Early rehabilitation also reduces the risk of developing preventable secondary complications and reduces length of stay in hospital and readmission rates. Every PCT should therefore provide access to inpatient rehabilitation for all stroke patients for whom such a service is appropriate. This inpatient rehabilitation should start as soon as possible and continue for as long as is required by the needs of individual patients. The new pan-london system for acute stroke care will ensure inpatient rehabilitation in the acute setting begins as soon as is appropriate for patients. Rehabilitation will usually begin in the newly-designated HASUs, before continuing on stroke units. Following their stay in a stroke unit, a small proportion of stroke survivors may need continuing specialist inpatient rehabilitation in the medium term. PCTs should provide access to non-acute inpatient rehabilitation for those survivors with a high level of dependency, who would not benefit from further acute inpatient input but for whom discharge into the community at that stage is not appropriate. This care should be delivered in dedicated non-acute inpatient facilities that meet the inpatient rehabilitation performance standards. Generic settings such as intermediate care beds are not appropriate for this continuing specialist rehabilitation. Further specialist inpatient care should be given to those for whom it is clinically appropriate. It should not be seen as an alternative to care at home from an effective community rehabilitation team. 25 Reducing brain damage: faster access to better stroke care, National Audit Office, National Service Framework for long term conditions, Department of Health, Healthcare for London

19 Evidence based benefits of specialist inpatient neurorehabilitation cited by the National Service Framework are: Rehabilitation in specialised settings for people with traumatic brain or spinal cord injury is effective and provides value for money in terms of reducing the length of stay in hospital and reducing the costs of long-term care. Transfer to specialist centres and more intense rehabilitation programmes are costeffective, the latter particularly in the small group of people who have high care costs due to very severe brain injury Current services National Sentinel Audits (2006 and 2008) showed a significant variation in the quality of stroke care in hospitals in London. 28 Some patients are cared for on specialist stroke units with access to rehabilitation from skilled staff, while others are admitted to generic beds or discharged with little or no rehabilitation care. These difficulties in acute inpatient rehabilitation will be addressed with the implementation of the designated stroke units outlined in the Stroke strategy for London. Capacity in non-acute stroke specialist inpatient services varies across London. There are examples of effective services that facilitate the timely transfer of suitable patients out of acute beds, and into a more appropriate setting. This allows the flow of patients through the acute pathway to be maintained. Other areas have either poor access to non-acute inpatient stroke services or no access at all. This results in patients being transferred to services that are inappropriate to their rehabilitation needs, or cared for on wards that would best serve the more acute end of the pathway. This leads to substandard care, delays in discharge and a fragmented stroke pathway. 27 National Service Framework for long term conditions, Department of Health, National Sentinel Audit, op. cit. Stroke rehabilitation guide 19

20 3.3 Current gaps in service Healthcare for London s engagement with survivors, carers and professionals has shown that some Londoners are experiencing the following gaps in best practice service provision: Multi-disciplinary teams do not always include the correct specialists or staff of sufficient seniority to make a decision. Access to clinically experienced skilled stroke staff is limited. This limits clinical development and service improvement. A lack of integration between hospitals and community-based staff including social workers. A lack of an inreach/outreach rehabilitation component. Rehabilitation beds in the stroke pathway are often not in stroke wards and the staff members do not have the stroke specific skills to deliver a high-quality service (this is partially addressed by the new London acute care model). An identified lack of emotional support for patients and carers. There is also a gap in support for clients behavioural and neuropsychological needs. A lack of information provided to patients, carers and staff with regard to the care pathway, what has happened, and what they can expect from the future. The length of the rehabilitation pathway is often insufficient to meet the needs of the patient. 3.4 Service description The majority of stroke survivors receive all of the inpatient rehabilitation they need on the acute stroke unit. The average length of stay in stroke units is 20 days but some stroke survivors stay for more than four weeks when it is clinically appropriate. All inpatient stroke rehabilitation will meet the relevant performance standards laid out in the Stroke strategy for London. There is no clear evidence concerning what types of resource are needed for inpatient rehabilitation (what professions in the team) or the quantity of any resource (how many beds, number of physiotherapists) 29, but the standards for London have been agreed based on clinical consensus. Inpatient rehabilitation will be patient-centred, helping patients to reach their own goals. Stroke specialist rehabilitation and support addresses the following issues 30 : mobility and movement communication 29 National Clinical Guidance for Stroke, Royal College of Physicians 3rd Edition, National Stroke Strategy, Department of Health, Healthcare for London

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