Neuro Rehabilitation Project Interim Report October 2014
Executive Summary Our project aim is to work with our partners and patients across North West London to improve the lives and wellbeing of people who have sustained an Acquired Brain Injury in North West London. The purpose of this report is to provide a summary of Imperial College Health Partner s (ICHP) neuro rehabilitation project and to provide some preliminary and interim recommendations, ahead of a final report in 2015, to help commission neuro-rehabilitation services for patients with Acquired Brain Injury in North West London. We have identified three work streams to help us achieve this: - Develop a demand modelling tool. This tool will help us understand how and when current services are used by patients so we can identify bottlenecks and constraints in the system that need to be addressed. This will mean we can ensure that in the future the right services are available, and there are enough of them to meet the demand of patients in North West London, thus reducing waiting times and improving outcomes. - Develop a web-based referral and waiting list system. This system will help clinicians refer patients to the most appropriate service, reduce the steps in the process, avoid duplication of referrals, and provide important feedback to clinicians on the time frame for patients being accepted on to a bed. Further, we will be able to monitor all patients that are waiting for neuro-rehabilitation services. - Review and make recommendations on the pathway of care for patients who have suffered an Acquired Brain Injury. Working with clinicians, patients and commissioners we will look at how patients who have received acute treatment for an Acquired Brain Injury then can access the optimal neuro-rehabilitation services. We will identify areas for improvement and make recommendations to clinical commissioners. The following recommendations are based on discussions undertaken among stakeholders, mainly clinicians. It was noted in undertaking these recommendations the burden of ill health among patients living with an Acquired Brain Injury. For example, estimates suggest that 1 in 4 people aged between 16 and 64 years with a chronic disability have a neurological condition Recommendations Priority resource improvement proposals in North West London for patients with Acquired Brain Injury to improve patient outcomes 1. We recommend a further increase of Level 2 neuro-rehabilitation bed capacity for NWL residents by approximately 5 to 6 beds. a. This figure is an estimate, based on clinical experience of continued demand and waiting times for admission. It will be reviewed following the capacity modelling. The modelling will also need to consider where data allows the overall increase in Level 2 capacity through the additional provision of 16 2
beds at the Alderbourne Unit, Hillingdon Hospital. These beds are available for all patients resident in North West London. 2. Undertake Multi-Disciplinary Team (MDT) reviews for patients with an Acquired Brain Injury who have cognitive deficits. Cognitive impairment is a risk factor for poor rehabilitation outcomes. a. It is estimated that in North West London there are 23,719 patients who have an Acquired Brain Injury (activity data). The proportion of those requiring review will vary according to the type of Acquired Brain Injury. For example, even mild Traumatic Brain Injury can cause long-term cognitive problems that affect a person's ability to perform daily activities and to return to work. Estimates for stroke patients suggest that between 30-50% will have a cognitive impairment. It is likely that MDT meetings will be needed weekly. There is a significant unmet need for cognitive rehabilitation and neuropsychological treatment. b. Increase access to neuro-psychology assessment and treatment, cognitive therapy and neuro-psychiatry provision for patients and carers to be available equitably across North West London and to ensure that sufficient provision exists in each area. 3. Increase provision of specialist nursing and residential care rehabilitation services together with introduction of specialist domiciliary care services to work with community rehabilitation services. a. Approximately 50% of patients from the Royal Hospital for Neuro-disability (the largest Level 1 service complex physical disability unit in England) are discharged to a nursing home or residential placement. b. 1/3 rd of disabled patients living in a residential setting have a neurological condition. c. Furthermore, there is a need to improve the clinical quality assurance among current providers 4. Pilot a Neuro-Navigator role (Senior Allied Health Professional) as a pathway coordinator for patients (as per the Barnet /Royal Free model) across all boroughs and acute trusts. a. Proposal by ICHP to pilot and evaluate this model in North West London in one volunteer locality with the aim of quantifying the effect on delays in transfers of care. 5. Commission vocational rehabilitation for patients to return to paid or unpaid employment and improve provision of social or day centres for working age patients with ongoing impairments who are unable to return to work. This may be in association with the third sector such as Headway. a. This will have wider impact on both health and social care budget, to enable patients where possible to return to work. 6. Develop a system for early supported discharge from hospital to home by jointly commissioning social and community care services with specific neuro-rehabilitation expertise and assistive/supportive technology. 3
Priorities without resource implications 1. Simplified referral process between services. o Current proposal of ICHP s work stream B is to develop and pilot a web based referral/waiting list tool. Although, this may have resource implications, simplifying the process does not. 2. Develop standards for rehabilitation teams and refine metrics currently being collected across North West London. Conclusions A high percentage of the population who acquire a brain injury are of working age. The socio-economic benefits of improving rehabilitation among this group have long term implications for health and social care budgets. Imperial Partners Health Partners preliminary findings suggests that neuro- rehabilitation in North West London would benefit from integrating commissioning of health and social care for patients with Acquired Brain Injury due to their complex and varied needs. Our further work will include patient and carer engagement, developing links with North West London Whole Systems Integrated Care leads, to describe the current issues among people living with a long term neurological condition who need access to neuro rehabilitation services, and developing research questions and audit ideas. 4
1. Introduction Our project aim is to work with our partners and patients across North West London to improve the lives and wellbeing of people who have sustained an Acquired Brain Injury in North West London. The purpose of this report is to provide a summary of Imperial College Health Partner s (ICHP) neuro rehabilitation project and to provide some preliminary and interim recommendations, ahead of a final report in 2015, to help the commissioning of neurorehabilitation services for patients with Acquired Brain Injury in North West London. We have identified three work streams to help us achieve this: - Develop a demand modelling tool. This tool will help us understand how and when current services are used by patients so we can identify bottlenecks and constraints in the system that need to be addressed. This will mean we can ensure that in the future the right services are available, and there are enough of them to meet the demand of patients in North West London, thus reducing waiting times and improving outcomes. - Develop a web-based referral and waiting list system. This system will help clinicians refer patients to the most appropriate service, reduce the steps in the process, avoid duplication of referrals, and provide important feedback to clinicians on the time frame for patients being accepted on to a bed. Further, we will be able to monitor all patients that are waiting for neuro-rehabilitation services. - Review and make recommendations on the pathway of care for patients who have suffered an Acquired Brain Injury. Working with clinicians, patients and commissioners we will look at how patients who have received acute treatment for an Acquired Brain Injury then can access the optimal neuro-rehabilitation services. We will identify areas for improvement and make recommendations to clinical commissioners. By undertaking the three work streams identified, we aim to achieve the following: Gain a better understanding of the current situation of how neurorehabilitation services are provided and accessed for residents of North West London to inform decisions and recommendations about how better to plan services. Develop and implement an innovative tool to reduce waiting times for neurorehabilitation services. Gain a better understanding of the current care pathways in place across North West London, identify areas for improvement and make recommendations to clinical commissioners. This report is divided into the following: background which details the reasons for undertaking this project; an outline of the project and associated work streams; and, 5
recommendations for priority areas for action in North West London. Further background and supporting information, for example, the current levels of neurorehabilitation service provision in North West London and existing neuro-rehabilitation pathways are included within the appendices. Other concurrent work is being undertaken nationally and locally, with the specific aim of improving the care of patients with neuro-rehabilitation needs. This includes work by the Triborough Councils and Clinical Commissioning Groups in North West London through the Better Care Fund which provides an opportunity to encourage integrated commissioning and integrated delivery and Whole Systems Integrated Care. Brief overview of Whole Systems Integrated Care (WSIC) and Better Care Fund (BCF) 1 The Triborough Councils and Clinical Commissioning Groups in North West London are one of the national pilot sites for the Whole System Integrated Care (WSIC).The vision of WSIC is about transforming and reshaping the local health and social care economy by integrating the models of care, operational delivery and funding more tightly for a cohort of patients. Across the Triborough health and social care environment, there is already a shared commitment that: people are enabled and supported to stay as healthy and as independent as possible for as long as possible people are supported to live in the most appropriate place according to their choice and needs and are able to maintain maximum control over their lives The Better Care Fund is entirely compatible with the Whole Systems Integrated Care programme as it creates a pooled fund to catalyse integrated working, to deliver tangible multidisciplinary and integrated services and teams focused on delivering benefits to the population. Within the Better Care Fund Programme (A) there has been specific work on business case which proposes the way forward to develop a Triborough Integrated Community Independence Service which will integrate and enhance existing local models and delivery frameworks to achieve common and improved outcomes for the local population. Community Integrated Service provides a range of functions including rapid response services to prevent people going into hospital, and rehabilitation and reablement which enable people to regain their independence and remain in their own homes. The service is currently delivered by a multidisciplinary team of community nurses, social workers, occupational therapists, GPs, geriatricians, mental health workers, reablement officers and others. 2. Background Neuro-rehabilitation is a broad term that describes a wide range of interventions and treatments that are given to patients with a multitude of disease conditions, from Acquired Brain Injury (ABI) to degenerative disorders. Patient needs are usually multi-dimensional, including physical, cognitive, psychological and medical and may be very complex. For 1 Kindly provided by Rob Sainsbury and Ray Boateng 6
example, head injury patients may find themselves in a spiral of decline revolving around the loss of their job, alcohol dependency, and losing their home. By breaking this cycle we can bring about long term health and wealth benefits through improving their independence (within the limitations of their significant disabilities) and avoiding social exclusion. In North West London there are challenges within the healthcare system for patients to access appropriate and timely neuro-rehabilitation services. In particular, current care pathways for patients with Acquired Brain Injury (ABI) rely heavily on accessing neurorehabilitation care from multiple providers. As a consequence of this, the pathway is fragmented and difficult to navigate for health and social care professionals as well as patients and carers, leading to long delays in accessing neuro-rehabilitation care. 2 Additionally, there is a wider effect on the health economy, with patients with ABI experiencing unnecessarily long stays in acute hospitals, significant delays in transfers of care, and delays in receiving appropriate neuro-rehabilitation care. For example, preliminary audits of delayed transfers of care in the boroughs of Kensington and Chelsea and Westminster have shown that 50-60% of acute bed days lost are associated with delays in accessing neuro-rehabilitation care. Many patients with ABI are of working age with knock on effects for wider society if they are unsupported to return to work and gain their independence. They will require higher levels of community, social and health care for an extended time period. It is difficult at any one moment in time, to specify precisely the number of level 1 and level 2 designated beds in the system. Patients from NWL are referred to rehabilitation facilities elsewhere in London, and patients from elsewhere in London are admitted to NWL facilities. Furthermore, there are a number of facilities which informally provide level 2 neurorehabilitation, without having been specifically commissioned as such. For example, at Imperial College Healthcare NHS Trust. The closure of the Brain Injury Rehabilitation Unit (BIRU) in 2011 has left a significant under capacity of inpatient and outpatient neurological and cognitive therapy services. 2 Imperial College Healthcare Trusts Discharge Database 7
3. Aim of Project Our project aim is to improve the lives and wellbeing of people living in North West London who have sustained an ABI North West London. To address the current challenges of neurorehabilitation services in North West London, Imperial College Health Partners is working with provider organisations, clinical commissioning groups, social services, patients and carers and the third sector to address the neuro-rehabilitation needs among patients with Acquired Brain Injury. The following three work streams were identified: To develop a demand modelling tool To develop a web-based referral and waiting list system To review and make recommendations on the pathway of care for patients who have suffered an Acquired Brain Injury. 3.1 Develop a demand modelling tool The aim and outcome of this work stream is to gain a better understanding of the current situation of neuro-rehabilitation provision, demand and need in North West London, which will help inform decisions and make recommendations on how best to plan services. This work stream involves developing a: A) Demand model. This model aims to predict patient arrivals at neuro-rehabilitation units and help plan for predictable changes, for example, increased pressures for beds over the winter months. B) Queuing and delay model. This model will help determine whether the current number of neuro-rehabilitation beds meets present and future demands. It will be based on the proposed demand model and performance measures such as mean bed delays, probability of waiting times greater than a set amount and bed occupancy levels. C) Capacity management tool. This tool will help develop an effective policy for future bed allocation planning by determining how different levels of capacity will respond to current and future demands. Thus helping units to find an optimal solution. D) Map of current bed provision for neuro-rehabilitation (Figure 1) Figure 1 shows a completed map of provision in North West London. There are: one Level 1 unit with 24 beds at Regional Rehabilitation Unit, Northwick Park Hospital two Level 2b units with a total of 48 beds: o 36 beds at the Alderbourne Unit, Hillingdon Hospital o 12 beds at the Robertson Unit, Willesden Centre additionally residents of North West London access Level 2b beds at the Royal Free Rehabilitation Centre (13 beds) and the Albany Unit at University College London Hospitals (10 beds) in North Central London. There are 63 Level 3 beds in total in North West London. These beds are mixed general and neuro-rehabilitation beds. The beds may be used by elderly patients, for example that require post-operative rehabilitation, or have progressive neurological 8
conditions. Therefore utilisation in the demand model will need to take account of this. Furthermore, these beds are accessed by patients with Acquired Brain Injury according to where they live, or if they are registered with a General Practitioner in North West London. Each individual CCG commissions beds for differing population groups. Hence beds are not pooled across North West London residents. The exception to this is the Regional Rehabilitation Unit at Northwick Park and the Alderbourne Unit will accept any resident in North West London to their beds. Figure 1 Map of neuro-rehab services (bedded), North West London 9
Table 1 below illustrates the current national definition of neuro-rehabilitation services and who is responsible for commissioning each service level. Table 1 NATIONAL DEFINITION SETS FOR REHABILITATION Level National definition service type Patient category rehab needs Level 1 needs and services: Tertiary Specialised Rehabilitation Services Provided by specialised rehab teams led by consultants trained and accredited in the specialty of rehabilitation medicine (RM) (and/or neuropsychiatry): Category A needs Serving a regional or supra-regional population and taking patients with Category A needs i.e. severe physical, cognitive communicative disabilities or challenging behaviours, with highly complex rehabilitation needs* that are beyond the scope of their local specialist rehabilitation services, and have higher level facilities and skilled staff to support these. Collect and report full National Specialist Rehabilitation Dataset Catchment: 1-3 million Predominantly highly complex caseload (e.g. 60-70% patients with RCS score 10) These patients with category A needs would typically be those who require one or more of: 1, Intensive, co-ordinated interdisciplinary intervention from 4 or more therapy disciplines, in addition to specialist rehabilitation medicine/nursing care in a rehabilitative environment 2, Longer programmes - typically 2-4 months, but occasionally up to 6-12 months 3, Very high intensity input e.g. 1:1 nurse specialling, or 2-3 trained therapists at one time 4, Neuropsychiatric care, including risk management, treatment under the Mental Health Act 5, Higher level facilities /equipment such as bespoke assistive technology Complex multi-agency vocational rehabilitation /support 6, Ongoing management of complex / unstable medical problems in an acute hospital setting 10
Commissioned by NHS England Level 2 needs and services: Level 2a Level 2b Specialist rehabilitation services Provided by inter-disciplinary teams led/supported by a consultant in RM, and meeting the BSRM standards for specialist rehabilitation services District level specialist rehabilitation services Led by consultant in RM. Serving an extended local population in areas which have poor access to level 1 services. Take patients with a range of complexity, including Category B and some Category A with highly complex rehabilitation needs* Collect and report full National Specialist Rehabilitation Dataset Local specialist rehabilitation services Led/supported by a consultant in RM. Serving a local population, predominantly patients with Category B needs. Collect and report at least the minimum national dataset Level 2a is commissioned by NHS England Level 2b is commissioned by CCGs Catchment: 600K-1 million Mixed caseload (e.g. 50% RCS score 10) Catchment: 250-500K Less complex caseload (e.g. 20-30% RCS score 10) Category B needs Patients with category B needs would typically be those who require: 1, Co-ordinated interdisciplinary intervention from 2-4 or more therapy disciplines, in addition to specialist rehabilitation medicine/nursing care in a rehabilitative environment 2, Medium-Longer durations of stay, i.e. usually >6 weeks occasionally up to 6 months 3, Rehabilitation/support to return to productive roles, such as work or parenting. 4, Special facilities/ equipment or interventions They may also have medical problems requiring ongoing investigation / treatment during rehabilitation. 11
Level 3 is commissioned by CCGs Local non-specialist services. Level 3: Includes generic rehabilitation for a wide range of conditions, provided in the context acute, intermediate care and community facilities, or other specialist services (e.g. stroke units) Level Other specialist services led or supported by consultants in specialties 3a other than RM - e.g. services catering for patient in specific diagnostic groups (e.g. stroke) with Category C needs. Level 3b Therapy / nursing teams have specialist expertise in the target condition Generic rehabilitation for a wide range of conditions, often led by nonmedical staff, provided in the context acute, intermediate care and community facilities, for patients with Category D needs Category C and D needs The majority of patients have category C or D rehabilitation needs. These individuals will travel satisfactorily down the path from injury/illness to independence with the help of their local rehabilitation and support services. However, a small minority of patients will have more complex needs requiring specialist rehabilitation, and a few will have very complex needs or profound disability, requiring a tertiary specialised rehabilitation service. In addition, it is important that we consider that neuro-rehabilitation needs among patients may be best met through out-patient based services or in the home setting and that this may represent a larger proportion of the burden. 12
Figure 2 shows the care and service pathway for rehabilitation beds that exists from hospital into the community. Measures that are commissioned in the community helps any blocks in acute care Figure 2. Care/Service pathway for rehabilitation beds from hospital to community 13
The funding arrangements for neuro-rehabilitation are complex and Table 2 shows preliminary work that has been undertaken to understand the costs that are incurred. Further, more detailed financial analysis to enable a programme budgeting approach would involve new financial data collection to be requested of care providers and currently sits outside the scope of this project. Table 2. Financial data Level 1 & Level 2a Commissioned by NHS England not sought Level 2b Commissioned by North West London CCG (Inner) 10 Level 2b beds (approximately 1.4 million) Additional costs incurred include activities at other London units. Approximate costs are between 3k to 4k per week and varies dependent on the level of care. Accurate activity data is missing. Commissioned by North West London CCG (Outer) Pending Level 3 Commissioned by North West London CCG Funding arrangements for Level 3 services are included within a block budget for community services and are not readily disentangled. 14
In summary - Level 1 NHS England commissioned neuro-rehabilitation services/spinal services bedded intensive Multi-Disciplinary Team (MDT) input with access to specialist medical interventions - Level 2 CCG commissioned neuro- rehabilitation services bedded intensive MDT input with some access to specialist medical interventions - Level 3 CCG commissioned community based neuro- rehabilitation and general rehabilitations services, which include the following: Local bedded units with neuro-rehabilitation trained staff available to support with 24 hour nursing care Domiciliary MDT home based MDT input with specialist care agency staff Out-patient neurotherapy services in community Out-patient neuropsychology services Vocational Rehabilitation services Navigator support to access appropriate services Specialised support activities and leisure options Long term care placement in specialised nursing homes A limitation to work stream A and the proposed modelling is that the routine data being used is historical and may not exactly reflect the current true need for rehabilitation services among the North West London population. To address this potential limitation, work has been undertaken to examine the incidence and prevalence of long term neurological conditions in the North West London population by borough as an estimate of likely need. Two sources of data have been used: first population data, as identified by the Public Health Observatories i and, second, activity data provided by the Clinical Strategic Network for Neurology for London (Tables 3 & 4). The work stream will explore the potential to link the estimates of population incidence and prevalence of long term neurological conditions to current work on demand modelling. This along with proposals to address current knowledge gaps and need for prospective data collection is being considered within the current project time frame. 15
Table 3. Estimates of incidence & prevalence of long term neurological conditions, North West London population 16
Table 4. Estimates of incidence & prevalence of long term neurological conditions (using activity data) among North West London population 17
3.2 Develop a web based referral and waiting list tool The aim of this work stream is to develop, pilot and evaluate a web-based interactive referral and waiting list tool that will help effectively manage neuro- rehabilitation beds in North West London. This system will help clinicians refer patients to the most appropriate service, reduce the steps in the process, avoid duplication of referrals, and provide important feedback to clinicians on the time frame for patients being accepted on to a bed. Further, we will be able to monitor all patients that are waiting for neuro-rehabilitation services. Current work is being undertaken London wide by London Specialist Commissioning and Level 1 specialist units to develop and pilot a web based tool (two years) to manage neurorehabilitation patients that are referred and discharged from their units. They have proceeded with using the developer CleverMed that has developed clinical platforms for UK Neonatal units. Imperial College Health Partners is presently investigating the feasibility of extending this to Level 2 and 3 units in North West London and piloting this over a shorter time frame with the same developer (CleverMed). 3.3 Review and make recommendations on the pathway of care for patients who have suffered an acquired brain injury The aim of this work stream is to describe what a clinically effective set of service options and pathways would look like for patients with an Acquired Brain Injury. It is recognised that any recommendations will take place within a wider need to develop a cost effective and integrated model of neuro-rehabilitation care. Members of the work stream consisted of a wide range of expert clinicians and therapists, especially in North West London that have helped to provide the context and proposals to improve neuro-rehabilitation care (Appendix 6). The members summarised the current environment in which services are delivered and the potential this has on the delivery of care. These include the following factors: Patients were mobile with variable family support High volume of homeless and vulnerable people suffered brain injury Multicultural Patients and families experienced difficulty navigating the system and were disempowered by this Complex health and social care funding and restrictions which act as barriers to transfers of care Limited access to integrated mental health/health/social services Access to services vary depending on which borough is providing them Mobile work force with high turn over Current pathways and effective neuro-rehabilitation service model Appendix 4 shows the current service pathways and options for patients with Acquired Brain Injury that require neuro-rehabilitation services in North West London. There exist a number of key care providers in the wider London region; a consequence of the complex needs among this patient group. 18
The work stream went on to identify the key components of an effective and efficient neurorehabilitation service model. The components include: Appropriately skilled staff to deliver support for cognitive, behavioural and emotional needs, who can make decisions and deliver on rehabilitation pathways and services. Acute services that can support effective assessment periods with acute rehabilitation input and avoid unnecessary referrals to Level 1 or 2 beds. Multi-disciplinary group assessment of needs within the acute and community setting. Simple referral process for all services with access to an on line referral systems aligned to existing forms, for example, as used for stroke services Rapid screening of patients for bedded services with standard response times that are met. Access to appropriate range of service options (e.g. vocational rehabilitation, short term rapid response, cognitive rehabilitation in transitional living environment with 24 hour supervision) within a standard waiting time. A standard minimum dataset agreed by the whole system using internationally standardised and validated tools and patient reported outcome measures. Flexible funding streams between health and social services to fund individual patient needs where required. Access to follow up and review; either a patient or GP led model. Access to equipment and accommodation that enables the individual Access to good voluntary services and charities such as North West London Headway, Different Strokes, Stroke Association, Neurological Alliance, Back up, Multiple Sclerosis Society, Parkinson s Disease Society SWOT of delivering an effective pathway in North West London The National Service Framework for Long Term Neurological conditions published in March 2005 identified 11 quality requirements to support the needs of people living with neurological conditions. Table 5 summarises the strengths, weaknesses, opportunities and threats to delivering an effective pathway and appropriate service options for patients with Acquired Brain Injury in North West London, as measured against the quality requirements of the National Service Framework for Long Term Neurological Conditions. The members also discussed lessons learnt in managing current patients in existing pathways through use of case histories. Each case history illustrates a case for change to improve patient care with Acquired Brain Injury and as a result be more effective. 19
Table 5. SWOT analysis of National Service Framework for Long Term Neurological Conditions and Quality Requirements for North West London population QUALITY REQUIREMENTS QR 1 Person Centred care QR 2 Early recognition, prompt diagnosis and treatment QR 3 Emergency and acute management QR 4 Early and specialist rehabilitation STRENGTH WEAKNESS OPPORTUNITY THREAT Staff who understand patient centred care Neuroscience Centre Major Trauma Centre Trauma network Access to Level 1, 2 & 3 beds Access to community neurorehabilitation services Occupational therapy/physiotherapy/speec h and Language Therapy/Dieticians domiciliary services Access to experienced Rehabilitation consultants, nurses & therapists Variable waiting times for services & Variable services Delays in transfer of care from acute setting to rehabilitation services Long waiting times Complex referral processes; duplication of assessments Delays in transfers of care from acute and poor flow through beds Limited exit routes for severely affected individuals High administrative burden of metrics, not directly associated with patient care Improve referral processes Improve access to information via a Navigator Integration of services Reduce delays in transfers of care Faster access to a wider variety of options, especially community based Extend assessment periods in acute settings to enable appropriate service options to reduce inappropriate care Stream line referral process Reduce duplication of assessments Reduce metrics requested Use resources better by sharing resources and skills Multiple providers North West London undergoing significant redesign/shaping healthier future Historical patterns of referrals and ways of working Strongly held personal beliefs Poor feedback mechanisms As demand for neurorehabilitation increases there will be increased pressure for non- 20