Frameworks & Guidelines for Practice: Recent developments in the UK

Frameworks & Guidelines for Practice: Recent developments in the UK Andy Tyerman Consultant Clinical Neuropsychologist Community Head Injury Service Vale of Aylesbury Primary Care Trust andy.tyerman@voapct.nhs.uk

Recent national guidelines / standards : • Head injury:Triage, assessment, investigation and early management of head injury in infants, children and adults(NICE, 2003). • Rehabilitation following acquired brain injury (RCP, BSRM, 2003) . • Vocational assessment & rehabilitation after ABI. (RCP/Jobcentre Plus/BSRM, 2004). • The National Service Framework for Long-term Conditions (Department of Health, 2005).

National Institute of Clinical Excellence: Head Injury - Clinical Guidelines (2003) • Presentation and referral • Transport to A&E & pre-hospital care • Assessment/investigation in A&E (eg CT scan) • Admission to hospital • Transfer from secondary to tertiary care • Observation of admitted patients • Discharge (incl. sample discharge advice cards) www.nice.org.uk

British Society of Rehabilitation Medicine National Clinical Guidelines for Rehabilitation following Acquired Brain Injury (Turner–Stokes L, ed.) Royal College of Physicians / British Society of Rehabilitation Medicine, Dec. 2003 (www.rcplondon.ac.uk/pubs)

BSRM Guidelines – Content • Principles and organisation of services • Approaches to rehabilitation • Carers and families • Early discharge and transition to rehabilitation • In-patient clinical care – preventing complications • Rehabilitation setting and transition phase • Rehabilitation interventions • Continuing care & support

In-patient clinical care • Optimising respiratory function • Management of swallowing impairment • Maintaining adequate nutrition & hydration • Positioning and handling • Effective bladder & bowel management • Establishing basic communication • Managing epileptic seizures • Emerging from coma and PTA • Prolonged coma and vegetative states

Rehabilitation interventions • Promoting continence • Motor function and control • Sensory disturbance • Communication & language interventions • Cognitive, emotional & behavioural management ……cont.

…. cont. Rehabilitation interventions • Optimising performance in daily living tasks • Leisure & recreation • Computer and assistive technology • Driving • Vocational/educational rehabilitation

Identified need for guidelines on long-term community rehabilitation, care & support Possible content: • Rehabilitation interventions in the community • Occupational, leisure and social activities • Family & sexual relationships • Neuropsychotherapy provision • Supported living (incl. aids/equipment) • Driving & other independent travel needs • Support for family and friends

Inter-Agency Advisory Group on Vocational Rehabilitation after Brain Injury: Vocational Assessment & Rehabilitation after Acquired Brain Injury : Inter-Agency Guidelines Royal College of Physicians, Jobcentre Plus / British Society of Rehabilitation Medicine, 2004 www.rcplondon.ac.uk/pubs

ABI: Vocational Service Guidelines • Guidance and support in returning to previous employment, education or training. • Vocational/employment assessment to determine alternative avenues of employment or training. • Vocational rehabilitation to prepare for return to alternative employment, education or training. • Supported employment for those requiring ongoing support and/or additional training. • Permitted work, voluntary work or alternative occupational / educational provision.

Brain injury vocational rehabilitation provision ABI Team: NP/OT Occup.Health DEA Work Psychol. Care Manager Adult Educ. Work Prep. Access To Work Day Activity Shelt. w/shop Vol. Work Permit. Work WORK STEP Voc. Train. New Job Old Job

Inter-Agency Guidelines: Implementation • Development of local inter-agency protocols • NHS, JCP, SSD, vocational/educational providers • Key staff to establish ongoing service links • (e.g. NP/OT regular consultation with WP/DEA) • Development of ABI vocational training • awareness vocational needs + specialist skills training • Need to review future provision for VR for ABI • (NHS/SSD) NSF-LTC + DWP Framework for VR

The National Service Framework for Long-term Conditions (NSF-LTC) Specific focus on long-term neurological conditions in people of working age but also wider focus on issues common to long term conditions (Department Health, 2005) (www.dh.gov.uk/longtermnsf)

What are National Service Frameworks ? NSFs are ‘blueprints’ for care which: • Set national standards and define service models • Highlight current best practice • Put in place strategies to support implementation and delivery • Establish performance measures to monitor progress (Department of Health, 2003)

The NSF for LTC aims to: • promote quality of life and independence by ensuring that people with long-term neurological conditions ‘receive co-ordinated care and support that is planned around their needs and choices’. • transform health and social care across the care pathway, from symptom onset & diagnosis through acute care & rehabilitation to long-term community support and, when required, end-of-life care.

Quality Requirements – Structure • Aim • Quality requirement • Rationale • Evidence based markers of good practice

QR1. A person-centred service Quality requirement: People with long-term neurological conditions are offered integrated assessment and planning of their health and social needs. They are to have the information they need to make informed decisions about their care and treatment and, where appropriate, to support them to manage their condition themselves.

QR1 Markers of good practice – outline: • timely integrated assessment by all relevant agencies leading to individual care plan: • covers current & anticipated needs - holistic in nature • held by person & regularly reviewed (incl. self-assessment) • named point of contact for everyone + for complex needs named person responsible for co-ordinating input • care assessment/planning for life transitions to provide continuity of care (e.g. transfer to adult services; across geographical boundaries; change in social circumstances).

…cont. QR1 Markers of good practice – outline • Arrangements for providing information: • timely, quality assured, culturally appropriate information on service provision, on the condition and how to manage it ; and on wider social inclusion issues. • professionals, people with LTNC and carers receive training on effective ways to provide & use information. • access to education and self-management programmes, tailored to individual need

QR2. Early recognition, prompt diagnosis and treatment Quality requirement: People suspected of having a neurological condition are to have prompt access to specialist neurological expertise for an accurate diagnosis and treatment as close to home as possible.

QR2 Markers of good practice - outline: • improved access to neurological expertise (e.g. through training, shared protocols, MD neurology clinics) • diagnostic services effectively designed with sufficient capacity, consistent with NICE and other guidelines • improved access to appropriate treatments – guidelines, early integrated assessment/care planning & information • prompt access to ongoing specialist neurological advice and treatment including specialist nurse practitioners • improved access to treatment review

QR3. Emergency and acute management Quality requirement: People needing hospital admission for a neurosurgical or neurological emergency are to be assessed and treated in a timely manner by teams with the appropriate neurological and resuscitation skills and facilities.

QR3 Markers of good practice - outline: • complies with NICE & other standards/guidelines • local hospitals have resources for treatment & review (ie. staff, facilities, links & protocols) • protocols comply with NICE guidelines (eg HI) • transfer to neuroscience / SCI centres when needed (capacity - staff & facilities) + return • local hospitals – suitable wards, facilities & staffing for ongoing care, supervision or rehab.

QR4. Early and specialist rehabilitation Quality requirement: 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. When ready, they are to receive the help they need to return home for ongoing community rehabilitation and support.

QR4 Markers of good practice - outline : • rehabilitation complies with NICE guidelines & takes account of other nationally accepted guidelines • improved access (& re-access) to rehab. provided: • early, at appropriate intensity, by co-ordinated team; • trained staff support people & carers in applying skills in ADL • person, family and rehabilitation team work to agreed goals • seamless transition of care through integrated working • specialist rehabilitation for very severe / complex needs

QR5. Community Rehabilitation & Support Quality requirement: People with long-term neurological conditions living at home are to have ongoing access to a comprehensive range of rehabilitation, advice and support to meet their continuing and changing needs, increase their independence and autonomy and help them to live as they wish.

QR5 Markers of good practice – outline : • access to flexible programmes focussed on individual goals beyond basic care which promote participation in life roles • local multi-disciplinary rehab. and support in communityby professional with the right skills and experience: - joint working, access to specialist expertise; available long-term • support people and their family and carers to: • live with, & develop knowledge and skills to manage condition • achieve sense of well-being / long-term psychological adjustment • maintain function & prevent deterioration as condition progresses

QR6. Vocational rehabilitation Quality requirement: People with long-term neurological conditions are to have access to appropriate vocational assessment, rehabilitation and ongoing support to enable them to find, regain or remain in work and access other occupational and educational opportunities.

QR6 Markers of good practice – outline : • co-ordinated multi-agency vocational rehabilitation taking account of national guidance/best practice • local rehab. services: review needs; work with agencies to provide basic vocational assessment, guidance & support; + refer on to ….. • specialist vocational services for complex needs, providing specialist vocational assessment & counselling, job retention and workplace support; VR programmes; & advice for local services. • routine evaluation/monitoring of long-term outcomes

QR7. Providing equipment and accommodation Quality requirement: People with long-term neurological conditions are to receive timely, appropriate assistive technology / equipment and adaptations to accommodation to support them to live independently; help them with their care; maintain their health and improve their quality of life.

QR7 Markers of good practice – outline : • assistive technology provided and maintained in accordance with agreed standards and guidelines • integrated community & assistive technology/equipment services work closely with neurology & rehab. services • equipment needs documented in integrated care plan • specific funding arrangements for assistive technology • social services work closely with housing / accommodation and Supporting People services

QR8. Providing personal care and support Quality requirement: Health and social care services work together to provide care and support to enable people with long-term neurological conditions to achieve maximum choice about living independently at home.

QR8 Markers of good practice – outline : • health and social services work together to provide full range of accommodation, care and support options • care in all settings provided by appropriately trained staff; who receive support / advice from specialist services • health & social services work together to help the person remain as independent as possible as condition progresses • equitable access to services based on need and support for people in applying for funding, care and support

QR9. Palliative care Quality requirement: People in the later stages of long-term neurological conditions are to receive a comprehensive range of palliative care services when they need them to control symptoms; offer pain relief and meet their needs for personal, social, psychological and spiritual support, in line with the principles of palliative care.

QR9 Markers of good practice – outline : • specialist neurology, rehabilitation and palliative care multi-disciplinary teams work together • specialised & generalised palliative care services at home or in specialised setting according to choice & needs • staff providing care and support in later stages of a long-term neurological conditions have appropriate training: • neurologists/neurorehabilitation teams in palliative care skills • all staff in management of LTNCs and in palliative care

QR10. Supporting family and carers Quality requirement: Carers of people with long-term neurological conditions are to have access to appropriate support and services that recognise their needs both in their role as carer and in their own right.

QR10 Markers of good practice – outline : • carers have choice on extent of caring role; and are offered integrated assessment, written care plan and contact person • involving carers in care planning/delivery (partners in care) • flexible, responsive and appropriate services for carers (emergencies; children; breaks), all culturally appropriate • help with adjustment to changes (especially cognitive or behavioural) , when appropriate on condition-specific basis • staff training in carer awareness, education and training which involves carers in planning and delivery.

QR11. Caring for people with long-term neurological conditions in hospital or other health and social care settings Quality requirement: People with long-term neurological conditions are to have their specific neurological needs met while receiving care for other reasons in any health or social care setting.

QR11 Markers of good practice – outline : • in other care settings: integrated neurological care plan available to all staff; close liaison with usual care team • neurological needs met in all settings: planned admissions (pre-admission interviews); emergency admissions (protocols for liaison); consultations between teams • consultation with person (& families/carers) about care • neuroscience, neurorehabilitation & spinal injury services provide advice & training for staff in other settings

5. Next Steps: Implementing the NSF-LTC Suggested early action for Primary Care Trusts: • Setting up managed neuroscience clinical networks (incl. leadership, financial & accountability) • Stakeholder event to agree local priorities • Setting up a local implementation team • Setting up integrated planning & commissioning arrangements with Social Services & other PCTs • Influencing provision of housing-related support

Clinical neuroscience networks Key stakeholders might include: • PCTs & specialised commissioning groups • acute trusts; foundation trusts; mental health trusts • neuroscience centre and spinal cord injury centre • community and home care providers • rehabilitation services • local authority services (SSD, housing, transport, FE) • voluntary and independent sector organisations • people with neurological conditions & carers

Other possible early actions: Assessing/auditing services, skills & training needs: • using LTC self-assessment tool for PCTs and SSD • auditing local services across all local organisations • analysing and profiling skills of local workforce • identifying key training needs for all agencies Redesigning services: • redesigning services and considering new patterns of working and skills mix (e.g. integrating trust & local SSD staff in specific multi-disciplinary teams).

NSF-LTC: Good practice guide • Managing LTCs self assessment tool • ‘Tackling the issues’ - guidance papers: • Care coordination for people with LTNCs • Local provision of information • Service models for LTNC • Evaluated examples of good practice (website guide - www.dh.gov.uk/longtermnsf)

NSF-LTC Implementation 2005/06 • Department of Health: • Project Team + National Leads • National Stakeholders Group • Neurological Advisory Panel • Professional groups • Working parties / professional standards / audit etc. • Regional / Local Action • SHA Leads + ‘Neuroscience/Neurological Networks’ • PCT Leads + local implementation groups

NSF-LTC – Neurological Advisory Panel Discussions have focused on: • Policy integration / differentiation • Incorporation into inspection process • Development of specific clinical indicators • Putting the NSF-LTC on PCT and LA agenda • Commissioning issues • Development of an minimum dataset for LTNCs • Development of models of service provision

Frameworks & Guidelines for Practice: Recent developments in the UK