Influencing Service Development

1
Influencing Service Development

• Brian Pentland
• Perth 28th June 2005

2
Outline

• Short History of Acquired Brain Injury
  Rehabilitation Services in Scotland
• Reports
• Changes in the last 20-25 years
• National Managed Clinical Network
• Outstanding Questions The Future

3
Acquired Brain Injury (ABI)

• Definition implies damage to the brain that was
  sudden in onset and occurred after birth and the
  neonatal period. It is thus differentiated from
  birth injuries, congenital abnormalities and
  progressive or degenerative diseases affecting
  the CNS

4
Acquired Brain Injury (ABI)

• Until early 1990s emphasis was on Head Injury
  (traumatic brain injury)
• Epidemiology plans still tend to cite figures for
  TBI
• TBI
• Young males
• Alcohol abuse
• Socially deprived
• Poor compliance with rehabilitation
• Non-TBI
• Young/middle-aged
• Stroke
• Employment issues
• Not provided for in Care of Elderly services

5
Acquired Brain Injury

• Traumatic brain injury (TBI)
• Haemorrhagic brain injury (HBI)
• 15 of Stroke
• Vascular brain injury (VBI)
• Ischaemic Stroke
• Anoxic ( metabolic) brain injury (ABI)
• Cardiorespiratory arrest, hanging, drowning
• Hypoglycaemia
• Infective brain injury (IBI)
• Meningitis, Encephalitis

6
History of Head Injury Rehabilitation

• 1940-45 Edinburgh Brain Injuries Unit, Bangour
  Hospital, West Lothian
• OT,PT, SLT Neuropsychology
• Continuum to community re-entry
• Patient participation in direction of programme
• Vocational issues
• 1942 Killearn, Stirling
• Oxford
• 1945 Gradual decline in rehabilitation facilities

7
Mair Report 1972

• Scottish Home Health Department (1972) Medical
  Rehabilitation the pattern for the future
• Specialists in rehabilitation
• Undergraduate teaching
• Important role of voluntary organisations
• The provision of facilities for the
  rehabilitation of head injury patients is an
  immediate pressing problem. We recommend that
  urgent consideration be given to it

8
Glasgow Head Injury Studies in 1970s ( beyond)

• INS, Southern General Hospital
• Epidemiological studies
• Glasgow Coma Scale
• Psychological consequences in longer term

9
1982

• Joint bid from Edinburgh Glasgow
• Profs Teasdale, Bond, Brooks (Glasgow)
• Profs Miller, Aitken (Edinburgh)
• Key Components 5 year plan
• In-patient unit at Astley Ainslie Hospital
• Day centre (5 day) at Southern General Hospital
• 5 years later
• In-patient Unit in Glasgow
• Day Centre in Edinburgh

10
1980s

• 1982 Medical Research Council
• Need for specialist units (dispersal to many
  general units unsuitable for either optimal care
  or for research)
• 1986 Royal College of Physicians
• Physical Disability in 1986 Beyond
• 1986 Royal College of Surgeons
• Revised 1999
• 1988 British Society of Rehabilitation Medicine
• 1989 British Psychological Society
• 1990 Royal College of Psychiatrists

11
Physical Disability in 1986 and Beyond (Royal
College of Physicians, London)

• Regional Units
• assessment of severe physical disabled
• aids appliances
• orthotics prosthetics
• Disabled Living Centres
• specialist centres (eg spinal/stroke)
• teaching training
• research

12
Physical Disability in 1986 and Beyond (RCP)

• District Generic Services
• Aids equipment
• Housing
• Physically disabled school leaver
  -Younger severely handicapped
• Driving for disabled
• Sexual counselling
• Head injury
• Visual impairment
  -Hearing impairment
• Communication aids
  -Wheelchairs
• Prosthetics orthotics
• Urinary incontinence
  -Stoma Care
• Pressure sore

13
Services for Young Adults with Acquired Brain
Damage (Br Psychol Soc 1989)

• Acute Phase
• Neurological Rehabilitation Units
• Non-residential Rehabilitation Centres
• Respite Care
• Supported Living
• Behavioural Treatment Units
• Work Centre
• Case Management

14
Neurosciences Centre/District General
Hospital Acute Phase
Rehabilitation Day Centre
Behaviour Disturbance Unit
Family
Work Centre
Supported Living
Respite care
15
1988 1990

• 1988 Medical Disability Society- later named
  British Society of Rehabilitation Medicine (BSRM)
• Recommendations revised 1998 ( 2003)
• 1990 Royal College of Psychiatrists
• Consultant psychiatrist team in each Health
  Board
• Regional neurobehavioural Unit
• 20-30 beds
• Community long-term care facilities

16
Scottish Home Health Department 4th June 1990

• Rehabilitation of Traumatic Brain Injuries
• Estimated need for country 60 beds
• Early in-patient rehabilitation (50 beds)
• Substantial intractable behavioural problems
  10-15 bed unit
• 300,000 revenue-pump priming
• Deadline 31st July 1990

17
National Brain Injury Rehabilitation Service,
Scotland, 1990/91

• 0.3 million
• Bids invited for 2 acute (post-acute) units 1
  psychiatric unit
• Astley Ainslie Hospital, Edinburgh 20 beds
• Scotcare Unit, Bonkle, Lanarkshire 30 beds
• Royal Edinburgh Hospital 11 beds(?)
• No direct funding other than small initial
  capital.
• Subsidy to referring health boards (3 year pump
  priming)
• No provision for outreach (community) work

18
Royal College of Surgeons of EnglandJune 1999

• Insufficient resources for rehabilitation
  additional resources are urgently required
• Unacceptable for patients to spend prolonged
  periods in acute surgical/medical wards
• All patients with intermediate severe head
  injuries who have
• required admission for gt 48 hours
• not made a full recovery after neurosurgical
  intervention
• been discharged from the Intensive Care Unit or
• suffered severe head injuries where neurosurgical
  intervention is not required
• require admission to a rehabilitation unit or
  referral to community facilities

19
1999

• 10th Anniversary conference of Head Injuries
  Trust for Scotland (HITS)
• Head Injury Community Care Problems,
  Provisions Evaluation
• Mr Sam Galbraith announced that ABI would be
  included in all Social Work Departments
  Community Care Plans

20
2000 Scottish Needs Assessment Programme (SNAP)

• Huntingtons Disease, Acquired Brain Injury and
  Early Onset Dementia
• Office for Public Health in Scotland (Feb 2000)
• English equivalent The NHS Health Advisory
  Service (HAS) Heading for Better Care
  London,HMSO (1996)

21
Executive Summary of SNAP Report

• 300 ABI/100,000
• Heavy impact on patients families-complex
  health social needs disproportionate to number
  of cases
• Current services-poorly designed.
• Detailed information on numbers in need of care-
  prevents effective planning
• Gaps in service
• access to expert multidisciplinary assessment
• poor co-ordination of clinical social care
• mental health needs unrecognised
• lack of access to skilled, sustained
  rehabilitation
• inappropriate long-term placement /respite

22
Recommendations of SNAP Report

• Specialist Voluntary Agencies involved in
  planning services integrating their service
  with statutory sector
• Care Pathways
• Standards of Care
• Better Information professionals patients
• Advocacy
• Regional Centres -expertise in management
• Regional Advisers
• SIGN guidelines
• Data base from surveys

23
Scottish Intercollegiate Guidelines Network
(SIGN)

• SIGN No 46 (August 2000)
• Early Management of Patients with a Head Injury
• Emphasis on acute care
• Mention of rehabilitation approach
• further evaluation of this interdisciplinary
  goal-orientated approach is needed
• NICE Guideline 2003 first 48 hours

24
Health Social Work

• Joint planning
• Joint Future 2001
• Community Care Health (Scotland) Act 2002
• Partnership for Care 2003
• Through care initiatives
• Community based rehabilitation facilities

25
Rehabilitation following acquired brain injury
National clinical guidelines (BSRM 2003)

• Small numbers heterogeneity of ABI patients
• Different patients require different services
• Same patient requires different services at
  different stages
• Coordination communication between these
  services is of paramount importance
• Coordinated networks
• Joint commissioning (health social services)
• Liaison with statutory voluntary services
• Employment, education, housing
• Staffing provision must be adequate
• Rehabilitation should be goal-orientated
  individually planned

26
(No Transcript)
27
(No Transcript)
28
Changes in last 20-25 years
29
Rehabilitation Medicine Units 1982-2005

• 1982
• Bridge of Earn
• Edinburgh
• Inverness
• Uddingston

• 2005
• Aberdeen
• Ayr
• Dumfries
• Dundee
• Edinburgh
• Fife
• Glasgow
• Inverclyde
• Inverness
• Stirling

30
Voluntary Sector

• Headway
• National local
• Chest Heart Stroke
• Stroke is a government priority
• Meningitis Trust, Encephalitis Society
• Support workers (e.g. Connections)
• Residential care (e.g. Leonard Cheshire)
• Vocational (e.g. Momentum Moving IntoWork)
• Neurological Alliance

31
Information Sharing

• Nationally
• Scottish Head Injury Forum (SHIF)
• UK Acquired Brain Injury Forum (UKABIF)
• Locally
• Brain Injury Action Group for Edinburgh the
  Lothians (BIAGEL)

32
National Managed Clinical Network
33
Origins

• Scottish Executive
• Review of SNAP report
• Aim to improve link between secondary tertiary
  (national) brain injury rehabilitation services
• BUT
• No funded national service in existence
• Things had moved on with local provision
  developing in ad hoc way- inequalities in access
• Aim should be to improve every patients journey

34
(No Transcript)
35
The Iceberg of ABI
Severe challenging behaviour
Vegetative/ minimally conscious states
Major cognitive/behavioural change
Physical disability
Significant life change for majority
36
Managed Clinical Network (MCN)

• Concept dates from Acute Services Review (June
  1998)
• linked groups of health professionals from
  primary, secondary and tertiary care, working in
  a co-ordinated manner, unconstrained by existing
  professional and Health Board boundaries, to
  ensure equitable provision of high quality
  clinically effective services throughout Scotland

37
National MCNs

• Low volume-high cost services
• Cardiac surgery
• Cleft lip palate
• Paediatric renal services
• Does not bring with it new money
• Project coordinator

38
Initial (Steering) Group

• Professions
• Rehabilitation Medicine
• Neuropsychology
• Public Health
• Psychiatry
• Nursing
• Occupational therapy
• Patient organisation

• Health Boards
• Fife
• Forth Valley
• Grampian
• Greater Glasgow
• Highland
• Lothian
• Tayside

39
Outline plan for first year

• Map out current ABI stakeholders
• Identify core membership of NMCN
• Agree appropriate evidence-based guidelines
  standards with relevant partners particularly NHS
  QIS
• Establish tracking mechanism to identify patient
  journey
• Identify information requirements of patients
  carers
• Determine capacity for outreach services from
  secondary/tertiary care services to primary care

40
Outstanding Questions

• the Future

41
What is included in ABI?

• Brain tumours
• Multiple sclerosis
• Early dementias including Huntingtons disease
• Alcohol-related brain damage
• Do we set age limits?
• lt18 years Learning disability services/education
  system
• gt65 years Care of the elderly services/multiple
  pathologies

42
How do we track patients?

• ( should we track all patients?)
• Data Protection Act
• How do we provide it?
• 2,997 NEW cases every year in Lothian (J Moore)
• that is TBI alone!
• How do we ensure case identification of non-TBI?
• How long do we continue to track?
• Life long?
• Are there dangers of
• Aggravating concerns for individual
• Delay return to work/routine

43
Who truly represents the ABI person family in
determining priorities?

• Middle class
• Educated
• Employed
• Strong family support
• Single issue concern
• Physiotherapy
• Vocational
• Counselling
• Welfare

• Socially deprived
• Unemployed
• Poor educational record
• Substance abuse
• Poor social support
• Poor compliance with services provided

44
What about the needs of carers?

• Much of the burden of ABI is on
• Partners
• Parents
• Children
• Adjustment reactions change over time for both
  patient carer psychosocial problems may
  become evident or prominent many months after
  hospital discharge. Who deals with this?

45
Centralised vs Local Provision?

• Regional/national centre
• Concentrates expensive expertise
• Focus for research
• Training
• Complex cases
• Second opinion
• Behavioural

• Local Rehabilitation
• Access for family
• Liaison with community services/resources
• Home pass/Home visit
• Discharge arrangements
• Continuity of care in longer term

46
Centre-based vs Home based?

• Concentrates expensive expertise
• Training
• Complex cases
• Second opinion
• Focus for research

• Family-centred
• Real life situation
• Improved compliance
• Individual tailored input

47
64 Question

• How do we influence politicians to invest in ABI
  services?
• Experience indicates that realistic large
  financial investment is unlikely on a nationwide
  basis
• National MCN may provide opportunity to build a
  momentum

48
(No Transcript)
49
Plans

• There is no single solution
• Range of services needed
• Range of expertise
• Collaborative working of agencies
• Must address needs of rural areas
• We must get it right

50
(No Transcript)
51
Sorry No Answers! But Thanks for Listening