4RAUMATIC "RAIN)NJURY IN!DULTS 3ERVICE -APPING 2EPORT Content Page 1. Introduction 3 1.1 Background to the National Managed clinical Network 1.2 Initial focus 1.3 Nature of head injury 2. Service mapping process 7 3. Mapping by NHS Board 9 NHS Ayrshire & Arran 11 NHS Borders 15 NHS Dumfries & Galloway 17 NHS Fife 21 NHS Forth Valley 23 NHS Grampian 25 NHS Greater Glasgow & Clyde 29 NHS Highland 37 NHS Lanarkshire 41 Central Scotland Brain Injury Rehabilitation Centre 45 NHS Lothian 47 NHS Orkney 51 NHS Shetland 55 NHS Tayside 59 NHS Western Isles 63 4. Summary of findings & discussion 65 5. Recommendations 69 6. References 71 7. Appendix 72 i. Steering Group membership 1 2 1. Introduction 1.1 Background to the National Managed Clinical Network As the human brain controls all our thoughts, feelings and actions, both voluntary and involuntary, when it is damaged the consequences are often variable and complex. Acquired brain injury (ABI) often leads to a mixture of physical, communicative, emotional, and behavioural changes with profound consequences for the individual and their family. The person with such complex disabilities requires expertise traditionally based in medicine, mental health and learning disability services but does not fit neatly into any of these categories and so may be denied access to appropriate treatment. Brain injury rehabilitation needs a specialist approach that can deal with the combination of problems arising from ABI. ABI rehabilitation is patient or family-centred and involves joint working with social work, educational, vocational and voluntary agencies as well as health professionals. Head injury (or traumatic brain injury) is the paradigm and the inadequacies of services to this group have been recognised and lamented by leaders of the medical profession and the responsible authorities for many decades. During the Second World War attempts were made to establish co-ordinated services initially directed at military personnel but used extensively by civilians (1-3). Pleas were made to maintain these services in peacetime(4) and when rehabilitation medicine was proposed as a specialty in 1974 the Scottish Department of Health report singled out services for head injury as a topic for urgent attention (5). By 1989 there was still patchy and inadequate provision in Scotland (3, 6), which stood in stark contrast to most other Western Countries. In 1991 temporary funding was made available to establish a national tertiary rehabilitation service at three units. Two of these were to provide early in-patient rehabilitation at Astley Ainslie Hospital, Edinburgh and Murdostoun Castle, Bonkle in Lanarkshire; the other at the Royal Edinburgh Hospital was to cater to those with severe challenging behaviour. During the ensuing decade a number of initiatives occurred, particularly the establishment of generic and specialist rehabilitation medicine services in a number of NHS boards with in-patient and out-patient components. There have also been a number of welcome developments outside the health service. However the Scottish Needs Assessment Programme (SNAP) report of 2000 indicated that the provision of services for brain injured people in Scotland continued to be inadequate and patchy (7). Among their recommendations related to health provision were the following: % Agreed care pathways are needed by both professional and lay carers. % Agreed standards of care are needed to complement care pathways % Professionals and patients need access to better information (e.g. on care pathways; patient and carer needs; available services; and care standards) % Patients and carers urgently need help with the choices and decisions involved in moving through a complex care system. % Regional centres with expertise in the management of these conditions should be identified as sources of advice and training to extend the availability of their expertise. % The data currently available to allow planning of services need to be improved 3 As part of the review of the SNAP report the National Services Division (a division of NHS National Services Scotland) explored the current tertiary services provided at the Astley Ainslie and Royal Edinburgh Hospitals, Edinburgh. However it was recognised that specialist services of a tertiary nature had also been established in a number of other centres with both hospital and community rehabilitation approaches and that the development of services in Scotland has been erratic over the years. Consequently there were considerable inequalities in access to specialist advice throughout the country and therewasaneedtoaddressthebraininjuryrehabilitation requirements for the whole of Scotland. Accurate figures/epidemiology are not available for ABI. Even for traumatic brain injury the available epidemiology has limited evidence-base but the Royal College of Physicians suggests 2-4/100,000 of those categorised as moderate or severe head injury will have complex disability. A proportion of those with ostensibly mild head injuries have complex problems and non-traumatic brain injuries (e.g. subarachnoid haemorrhage, brain damage after cardiorespiratory arrest etc) probably account for as many individuals with these difficulties as traumatic cases. Improved acute medical and surgical care has led to reduced death rates from traumatic and non-traumatic brain injury but also increased numbers of survivors with complex disabilities. Thus a conservative estimate would be 8- 10/100,000 or about 400-500 cases annually in Scotland as a whole. It was felt that a National Managed Clinical Network approach would be appropriate to encourage development of services for this population of patients. A Managed Clinical Network is defined as: Linked groups of health professionals and organisations 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 (8) An application for the establishment of a National Managed Clinical Network for Acquired Brain Injury was successful and an MCN manager appointed in December 2006. The Steering group first met in February 2007. Copies of the application and directions to learn more about MCN’s can be obtained via our website: www.sabin.scot.nhs.uk 4 1.2 Initial Focus The Steering Group agreed that the initial report would concentrate on the health service provision for people aged 16-65 years with head injuries. More details on the rationale behind this decision are available via our website but a brief explanation follows: Head injury was chosen as the most common cause of ABI and the most practical starting point for a mapping exercise. The second most common cause is stroke and much work has already been done by local stroke MCNs for this group. The needs of children, particularly those less than 5 years of age, differ from adults and paediatric services for those with disabilities are longer established and usually greater than those for adults. Elderly people with head injury often have other pathologies that may have caused the injury and complicate subsequent treatment. Thus the initial focus is on those aged 16-65 years but specific attention will be given to transitional ages of adolescence (where children with persisting problems move on to adult services) and 65 years (when care of the elderly services takes responsibility for some cases.) The patient journey after moderate and severe head injury after Accident & Emergency may involve Intensive Care, Neurosurgery, and in-patient Rehabilitation. Rehabilitation is the transition from hospital to community care and often includes out-patient or community based input from health professionals. Many community health resources are delivered from primary care and will be under the auspices of Community Health Partnerships. The journey does not end there and many other agencies are involved particularly social work, employment and educational and the voluntary sector and the effects of head injury are often life-long. It was agreed that the initial focus of the managed clinical network should be on health service provision but with full consultation with and involvement of these other agencies. It is envisaged that a future stage of the network’s work will include a shift of attention from the NHS component to the wider aspects and so may evolve from a Managed Clinical Network to a Managed Care Network. The NMCN decided to begin with four principle objectives: • Develop standards of care • Map out current services for people aged 16 - 65 with traumatic brain injury • Identify the educational needs of health care groups involved in the care of people with traumatic brain injury • Identify information requirements of patients and carers This report deals with the second of these objectives - details of the others are available on request and via the website: www.sabin.scot.nhs.uk 5 1.3 Nature of head injury Determining the epidemiology of head injury is notoriously difficult 9,10. In this document the terms head injury and traumatic brain injury are used synonymously although this is not strictly accurate. For example an abrasion or laceration to the scalp constitutes a head injury but may not be accompanied by any brain damage. These problems are reflected in the International Classification of Diseases (ICD-10) which forms the basis of statistical recording of diagnoses in the NHS. The ICD-10 has ten separate codes that may apply to head injury. These codes are often applied from hospital discharge letters by non-clinical staff. If a scalp laceration is wrongly coded as head injury an overestimate of head injury may result. On the other hand it is estimated that about half of those who suffer head injury also have an extracranial injury. The associated injury may take precedence in terms of medical treatment and be the only injury recorded resulting in an under-recording of head injury. With these caveats, it is generally accepted that approximately 100,000 people attend hospital in Scotland with head injury each year. Of these about 20,000 will be admitted.