ICS0042

Written evidence submitted Dr Judith Allanson

I am sending this information in as the chair of the guidelines development group to set standards for specialised community rehab. This was set up by the BSRM. (British Soc for rehab medicine now named the British Society for Phsyical and rehabilitation medicine )  but includes professionals from a range of disciplines, services and geographies.

Many members are on half term leave so I am sending as an individual but have had endorsement from several on the panel.

As the CRA have already recommended to you;

These standards we have developed below can be met if the ICS s.and Boards are mandated to Employ a senior professional as a director/ or senior lead for rehab in each ICS.

The tasks the rehab director should be advised to take on, include

1.Use the existing major trauma network directories of rehabilitation services and build on these for all to access.( eg as in the east of england service directory).

This would enable;

• Better linking between services ( on discharge from hospital but also between services eg mental health, specialised inpatient  rehab services, community based rehab services, and 3rd sector eg headway).
• Awareness of any service provision gaps;
• Increased awareness of geographical inequalities;
• More efficient transfer between services.
• Ability to refer out if needs are not met in a local area

2.Mandate rehabilitation prescription use or at least a rehab notes of need  embedded in all discharge letters and outpatient reviews. ( can be “no rehab needs if the case” so does not have to be onerous)

• This is already in use for trauma patients admitted to major trauma centres.
• This will facilitate better communication between services and better information for patients to hold themselves
• This will enable data collection and understanding of need and service gaps

3. Mandate that GPs and other services completing FIT or sick notes tick a box to say they have discussed rehab need. ( they do not have to be able to do a full rehab assessment just to have considered it) .

Ideally a second box would be added to tick if rehab referral made and where eto, A link to the service directory for that region could be added to thes fit note form to make things easy for professionals completing them.

4.Ensure the rehab lead is linked to commissioning at both acute and community services to develop needs based pathway commissioning rather than site based commisioning.

              This will prevent some of the unintended problems that arise currently when teams decline patients because they don’t fulfil their criteria or feel they have already completed an activity contract. It will make referrals and transfer from one service to another more efficient and reduce duplciaiton of assessment etc.

A simple bit of evidence of benefit of integrated multi agency working comes from our work setting up a specialized community head in jury service in cambridgeshire ( the Evelyn Community Head Injury service) some years ago. I can forward if felt relevant.  This project involved creation of a “spiders web” of services across acute and community health, social services, housing and third sector linked to each other by regular meetings and training to plan working with shared clients and families ).

Please see below the summary of the standards we have developed at the BSRM to date;

Some of the particular ways of working recommended here are key to embed into all services by the leadership of the ICSs, as they are the things that will reduce inequalities of access to health. And thus inequalities in life expectancy and quality of life.

2021 BSRM Standards for specialist rehabilitation for community dwelling adults – update of 2002 standards

Summary

Specialist rehabilitation is necessary when people have developed loss of function across several domains following illness or injury, that requires coordinated assessment and rehabilitation from several rehabilitation professions with knowledge and expertise in managing their condition. 

• It is not only a critical part of the acute care pathway by enabling early discharge, but is also essential for effective rehabilitation of people living in the community, either with long term conditions or following acute onset illness or injury.
• Over the last 20 years, since previous guidelines were published, a considerable body of evidence has accumulated indicating that provision of Specialist Community Rehabilitation can, when available, reduce the length of stay in acute settings and facilitate patients’ return to work or other chosen activity, as well as preventing development of long term complications or readmission to hospital. (refer to fig 1 rehab pathway). 
• Its development has varied across the UK. With services evolving to meet the needs of people with a wide range of conditions, with a number of different effective service models currently in use depending on local resources and demographics.
• The key component of a specialised rehabilitation service is the formal commissioning of a multidisciplinary team of relevant professionals (including Rehabilitation Medicine), who have specific knowledge and experience in managing complex disabilities, and who work closely together, with service users, in an interdisciplinary manner, to achieve patient directed outcomes/goals.
• In the wake of COVID-19, many people experience a diverse range of impairments that require assessment and active intervention by specialist rehabilitation teams to optimise recovery and restoration of function. The pandemic has highlighted the current dearth of such services and increased public awareness of the need for coordinated rehabilitation services in the community. This is now emphasised in a number of national clinical guidelines (ref BSRM Phoenix from the Ashes and others) but is by no means unique to COVID-19. Any services that we develop in the wake of the pandemic will provide an important legacy for other patients with complex needs going forward.

Fig 1 pathways

In the past, services have often been focused on specific diagnostic groups (eg head injury, stroke etc) and tightly defined by catchment based on commissioning areas. Current policy aims to move away from this to embrace a more open and flexible approach in which services are centred on patient needs and commissioned in networks to allow greater flexibility, so that patients can access the service that is more suitable for their needs, even if it is out of their local area. Clearly any specialist rehabilitation service must have some specialisation that brings together teams with the relevant specialist skills. This could mean a specialist neuro-rehabilitation team, catering for patients with any complex neurological disability (eg acquired brain injury (any aetiology), spinal cord injury, progressive neurological condition etc) as opposed to  a ‘head injury’ or ‘stroke’ service, as long as there is provision within those services to offer condition specific information and interventions when appropriate.

These guidelines, being developed by a multidisciplinary group of experienced professionals from a range of services and regions of the UK, ( see membership below), will support this approach and will describe in its chapters, with reference to relevant up to date research;

• Effective service models with examples of good practice
• The range of rehabilitation techniques offered by specialised teams
• The role of rehabilitation medicine in specialised community rehabilitation
• Use of new technologies and ways of working
• Importance of specialist community rehabilitation for those left with complex rehabilitation needs after COVID 19 infection
• Use of data collection at patient and service level to record rehabilitation needs and outcomes
• Rehabilitation networks
• Importance and need for wide multi agency working
• Approaches to Commissioning.

It aims to define standards that are applicable to all community based specialist rehabilitation services and to supplement both existing BSRM standards and position statements, and current national guidelines that are relevant to people needing rehabilitation in the community (links below).

A commonly asked question is how many people are expected to need these services. The short answer is that we have no idea. The community is a comparative data desert and the NHS currently collects no systematic information on the number of patients needing specialist rehabilitation and the capacity to provide for them. There is currently considerable support for research activity to identify COVID-related symptoms, but little documentation of any rehabilitation needs that may result or how well they are being met.

The document will address both the services that are needed and the data requirements to monitor access to and outcomes from specialist rehabilitation in the community.

Standards

1.      PERSON CENTRED REHABILITATION

         Patients with complex rehabilitation needs should have access to specialist community rehabilitation that is tailored to their individual requirements. This may involve individual biopsychosocial assessments, information provision, negotiation of goals, specific individual and group interventions and facilitation of referrals to other appropriate services when needed.

• The involvement of family, friends and workplace, should be arranged when appropriate with patients consent.
• All patients should have a Rehabilitation Prescription (RP) (or similar) person-centred document, which is updated as they work with services, setting out their rehabilitation needs and the plan for how these will be met.

• The RP is shared between the professionals and agencies involved to optimise coordination and sharing of information as required to provide seamless care.
• Specialised rehabilitation services should have the ability to support clients living in the community, in decision making and be able to act as their advocates when they have reduced capacity.
• Discharge after assessment and or periods of involvement with the specialist community rehabilitation team should be carefully planned with active help transferring to other services when necessary.

2.      REHABILITATION PROCESSES

Accurate assessment of individual needs and personalised goal setting form the cornerstone to rehabilitation. A specialised rehabilitation service should deliver the whole process of informed initial assessment, goal-setting, rehabilitation intervention and review cycle. Outcome evaluation is also essential to confirm that goals are continuing to be met and any changing needs reviewed.

Specialised Community Rehabilitation should be individualised, patient centred and goal directed.

Patients should have access to 

• Detailed individual assessments of impairments, abilities, patient goals and rehabilitation needed.
• Individual professional intervention sessions to facilitate recovery to increase function and participation when needed.
• Domiciliary or work based visits should be arranged for those with whom rehabilitation is more appropriately conducted in the context of their normal home or work environment.
• Group working for developing increased understanding, learning strategies, impairment and condition management, peer support, when appropriate.
• Multiagency case conferences for planning and maintenance with complex presentations.
• Facilitation of links to other services with joint working when appropriate (eg at transitions from children’s services, with Drug and Alcohol teams, CMHTs, education, probation services, palliative care).
• Information and support from the time of diagnosis, for themselves and their families, particularly if they have chronic disabling or progressive conditions such as multiple sclerosis, cerebral palsy, muscle disease, polio.

• For patients who lack capacity to make decisions for themselves, best interests decision-making in line with the provisions of the Mental Capacity Act 2005 and advocacy to represent their interests to other agencies.
• Sessions for maintenance of independence and prevention of future disability.
• Team review in response to a crisis, including acute deteriorations in disability and imminent death.
• A clear point of contact with the team which is documented for the individual at all times, (this may be the admin link or a key worker depending on need).
• Regular team review meetings to evaluate outcome, reflect on progress, review and revise goals and plan ahead for the next stage of care.

3.      THE Specialist REHABILITATION TEAM

         Specialist Community Rehabilitation should be delivered by a co-ordinated appropriately experienced multi-disciplinary team who meet regularly and frequently in a structured way, to ensure shared discussion and decision-making throughout the patient pathway from referral, assessment, rehabilitation interventions, to review, onward referrals or discharge.

         The team may include a range of junior and senior staff, but should include professionals from all relevant disciplines and be led by a senior clinical rehabilitation professional with expertise in the specialty. For example, a community neuro-rehabilitation service should include Neuro Occupational Therapy, Speech and Language Therapy, Neurophysiotherapy, Neuropsychology, Rehabilitation Medicine, Rehabilitation nurse and Neuropsychiatry, and be led /supported by a Consultant in Rehabilitation Medicine.

         Staff numbers, training and experience should be adequate to offer both face to face client working and non face to face working such as team meetings, multiagency liaison, educational and other supporting work.

         Table 1 below – Example of staffing levels for a community specialist service to support people with acquired brain injury that aims to offer early rehabilitation as well as vocational rehabilitation (population 500,000) – chapters in the full document will have details of other models. This would be in addition to staff required for early supported discharge after stroke.

Table 1 – Example of staffing levels for a community specialist rehabilitation team
adapted from Royal College of Physicians and British Society of Rehabilitation Medicine. Rehabilitation following acquired brain injury: national clinical guidelines 2003
 

In addition to the core clinical team, there should be straight forward and efficient access to other disciplines, such as psychiatry, pain specialists, rehabilitation engineers and orthotists, as required.

4.      SERVICES should be part of Rehabilitation networks

         A specialist community rehabilitation service should be part of a service network or Rehabilitation network once these are established. The target population should be based on needs rather than diagnosis (eg ‘patients with complex neurological needs’, rather than ‘head injury’). There may be a broadly defined catchment area, but boundaries should be sufficiently flexible to cater for unusual cases where the specialist team are found to be the most appropriate service to meet a person’s rehabilitation needs in their area.

         Interagency working with social services and other agencies is crucial for effective rehabilitation. Each service should have an identified system for efficient and timely liaison with social services and all other relevant agencies such as mental health services. (examples listed below – not exhaustive).

         This should include clear least restrictive protocols for information sharing, joint working, and uncomplicated processes for interagency referrals. The aim being to minimise repeated assessments for the patient and time taken to be assessed by any receiving team.

         Information about what the service offers and how to refer should be available as part of local NHS services and service directories where they are established.

         Systems should be in place within the Trust or host organisation for quality assurance and clinical governance.

         Patients or clients and carers should be involved in the routine and strategic planning of rehabilitation services in their area.

5.      SERVICE PROVISION

         Each service should have systems in place to manage urgent referrals and minimise waiting times for access to the service.

         Co-ordinated service planning and commissioning should ensure that suitable services are available, in a timely fashion, within a reasonable travelling distance and be part of planned pathways of care and delivered within integrated rehabilitation networks.

         In rural areas, this may involve the establishment of satellite services, use of remote ways of working with investment in telehealth, remote assessment and telerehabilitation, in addition to peripatetic teams to reach isolated locations and review people face to face when needed.

         Where gaps exist in local service provision, defined processes for referral and funding should be in place to ensure that individuals can be considered for inclusion in services that are not available in their locality.

         Services should have processes in place to facilitate access for those who might struggle to engage initially (ie “hard to reach” groups of people). For example, offering more than one chance to attend an appointment if a patient does not attend when first invited, ensuring there is access to interpreting services, offering details of patient transport services, including support-workers, case managers or advocates, with patient consent, when appropriate. 

6.      REFERRAL AND ASSESSMENT

         All services should have a published and clear referral process.

         All referrals should be reviewed by a senior clinical professional in the team and further clinical information requested from other services when needed. This should involve sight of a rehabilitation prescription (RP) or patient passport when available.

         All referrals should then be discussed with the team in a timely manner and initial assessments arranged with the most appropriate professionals for that persons’ presentation and probable needs. Using a risk assessment system to triage and prioritise appointments.

         Involvement of a relative or carer in an assessment should be considered and arranged when appropriate.

         Information about the assessment and the specialist rehabilitation team should be given to the individual and/or family at or before an initial assessment. This should include information about the team, and when already confirmed by previous investigation, information about the patients’ condition and about other relevant sources of help or information such as societies, self-help groups etc.

         If a service feels unable to meet the needs of the person referred to them, they should ensure that patients are supported to access alternative services.

         The referral should be considered flexibly to avoid patients with uncommon presentations or very complex multidimensional needs falling between services. The team should keep an up to date knowledge of other services available in their locality and how to access them (eg by accessing a regional directory of services such as the EoE Major trauma network see link).

         Following initial assessment, a written summary with recommendations for further assessments and rehabilitation plans should be recorded. This should be copied to the GP and other relevant agencies, including the patient or client, if appropriate.

7.      DATA COLLECTION / REHABILITATION PRESCRIPTIONS

All specialised community rehabilitation services should

         Have clear, accessible and consistent recording of clinical information, patient’s level of function and goals, rehabilitation needs and interventions; including use of the Rehabilitation Prescription (RP) to document needs, the plans to provide for them and services delivered. (ref core standards on BSRM website.)

• Have clear review process of patient progress (eg system for regular review of case load on a rolling basis, with discussion and update at team meetings.)
• Record and report data on needs, inputs and outcomes at both the patient and service level using nationally-approved measures – see below
• Data recording and collation

This information should be recorded through a standardised and consistent tool/platform where data can be collated at a local level for workforce planning and at national level to inform strategic decisions.

Data should be collated through the Community dataset offered by the UK Rehabilitation Outcomes Collaborative (UKROC).

At minimum data should include:

• The Rehabilitation Prescription https://www.kcl.ac.uk/cicelysaunders/resources/tools/post-icu-presentation-screen-picups-and-rehabilitation-prescription-rp
• The Needs and Provision Complexity scale https://www.kcl.ac.uk/cicelysaunders/resources/tools/npcs
• At least one of the UKROC-approved outcome measures, recorded at the start and the end of the programme

The outcome measurement tools used may vary according to individual patient requirements, but should include one or more of the following:

• Goal attainment scaling https://www.kcl.ac.uk/cicelysaunders/resources/tools/gas
• The Northwick Park Dependency Scale and Care Needs Assessment https://www.kcl.ac.uk/cicelysaunders/resources/tools/npds
• The UK Functional Assessment Measure (UK FIM+FAM) https://www.kcl.ac.uk/cicelysaunders/resources/tools/fimfam
• The Mayo-Portland Adaptability Inventory (MPAI4). http://www.tbims.org/mpai/

8.      LIAISON and working WITH OTHER SERVICES

The specialist rehabilitation team should be aware of all relevant services in their area and how to facilitate their clients’ access to them when needed. This should involve the ability to work concurrently with other teams, including offering joint assessments and interventions to reduce the burden of duplication when appropriate.

• Depending on the community team’s remit, they are likely to need to link with some or all of the following specialist health care services in acute, mental health and community sectors:

• Medical Specialty outpatients such as Neurology and Neurosurgery clinics; MSK clinics; Respiratory teams
• Clinical Nurse specialists such as Epilepsy nurses and other Long term neurological conditions nurses
• Continence and tissue viability services
• Wheelchairs and special seating, Gait labs
• Environmental control systems, electronic assistive technology (EAT) and assistive communication teams
• Vocational rehabilitation services if these are not part of the specialist community rehabilitation service
• Palliative care services
• Occupational health services
• Drug and Alcohol services
• Community Mental health teams.

• Specialised community rehabilitation services should have;

• Clearly identified policies or pathways for working with general practitioners and primary care teams (generic, locality based community services).
• Access to in-patient rehabilitation services for re-assessment admissions.
• Systems in place to support transitions to adult specialist rehabilitation services for children and adolescents with disabilities approaching adult life.
• Ability to support clients in decision making or act as their advocates when then have reduced capacity.

• In particular there should be identified pathways/named links to facilitate clients access to and support from:

• Social services teams
• Housing
• Care agencies (including training for care staff for patients with complex care needs)
• Private sector agencies eg nursing homes
• Education and further education including special needs and out-of-area provision
• Disability employment advisory services and facilities for preparation for work
• Benefits Agencies
• Legal advice (for patients and their families and carers)
• Advocacy services - representing the individuals’ interests for those whose competence to participate in decisions about their care and their future is restricted (both in and out of hospital)
• Charities, self-help groups and voluntary agencies such as Headway and Stroke groups
• Driving ability assessment centre(s).

9.      STAFF Support, DEVELOPMENT,  TRAINING and AUDIT

         There should be a system of regular appraisal for all staff.

         Regular training should be actively encouraged and available both within and between disciplines, within and outside of the service, and time should be allocated for training on a regular basis.

         All services should undertake audit as a routine part of clinical practice. Audit should be undertaken as a multi-disciplinary activity, to encourage dialogue between professions. Audit sessions should be documented, and where change in practice is recommended, a named person should be designated to implement those recommendations, and changes evaluated.

10.  Relevant Guidelines, Standards for Specialist Community Rehabilitation + links

Below is a list of relevant guidelines and standards for specialist community rehabilitation with links (please use the control key and select the title)

BSRM position statements in preparation for publication in 2021

NHSe, NICE and other agency guidelines

BSRM Standards for Community Rehabilitation Working Party Membership

October 2022