IMPROVING YOUR EXPERIENCE

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1 Comments trom the Aberdeen City Joint Futures Brain Injury Group The Aberdeen City Joint Futures Brain Injury Group is made up of representatives from health (acute services, rehabilitation and community), social services and the voluntary sector in Aberdeen. The group was established ten years ago, to campaign for the provision of appropriate service for people with an acquired brain injury in Aberdeen although most of us also work Grampian wide Grampian. This patient / client group includes people with traumatic brain injury (e.g. sustained in road traffic accidents, falls, assaults), brain injury from infection or secondary to other medical conditions e.g. anoxia (lack of oxygen to the brain). The following are our comments. IMPROVING YOUR EXPERIENCE OF CARE Issues to consider: Which aspects of this agenda would you prioritise? Development of national networks Improved access to health services through development of services offered in primary care and community hospitals Safe and sustainable health services for remote and rural areas Improve transport infrastructure What specific actions should NHS Scotland take at a national, regional or local level to improve the experience of care? Establish local managed clinical networks for services for patients with brain injury (as a development of the national managed clinical network for brain injury). As a result of the development of managed clinical networks for stroke and epilepsy there has been an increase in communication between staff, support for learning and development of staff, increased job satisfaction and staff retention, increased support and better quality of services for patients with stroke or epilepsy and their carers. It makes sense that the benefits of this approach to working are applied to other patient groups with long term conditions. Communication and co-ordination promoted by MCNs is particularly essential to patients with long term neurological conditions (e.g. brain injury, multiple sclerosis, Huntington's disease) as these patients present with a complex range of difficulties including movement disorders, physical disabilities, sensory problems, communication difficulties, cognitive deficits, emotional problems and behavioural difficulties. The establishment of community based teams with specialist expertise. 1

2 A consultation exercise by the Brain Injury Joint Futures Group canvassing the views of patients with brain injury, their families and carers and professionals, identified the establishment of a brain injury team as the top priority. Such teams would provide local, easily accessible, expertise and advice, and would train and educate carers and local professionals and provide support for carers. Some of this could involve reorganisation of existing services. However, funding would have to be made available where services do not have the required professionals for the team. It is likely that the teams would vary in size and composition depending on the population and local need. Have you any recent personal experiences that might help us shape and inform future actions? Experiences with patients The following are two examples of patients to illustrate some of the challenges faced by patients with acquired brain injury and their families, and how these could be addressed through local services, if they were available. e.g. Chris is 49 years old. He suffered a tumour which was removed successfully. However, as a result, he suffered from cognitive difficulties, changes in his personality and difficulties controlling his emotional responses. He had difficulty interacting with his grandchildren on an appropriate level and would easily lose his temper with them and as a result his son in law did not want him to spend time with his grandchildren. Chris received care from local agencies however sometimes lost his temper and was verbally abusive to his carers. Carers often found his behaviour too difficult to deal with and refused to return. His wife had to leave her full-time job to provide the consistent supervision and care that he needed. This was a considerable strain and Chris's wife developed depression. Local expertise could have assisted in addressing the changes and providing the family with understanding and strategies to deal with Chris's response to his grandchildren. A team could have worked with care agencies to provide education, advice on how to deal with Chris's challenging behaviour and advice to the care agency on support for carers (to help retain employment and consistency). This may have prevented Chris's wife having to give up her job and may have prevented or eased her mental health problems. Carrie is 30 years old. She had a severe brain injury in a car accident and made a good physical recovery. However, she was left with significant cognitive deficits, including problems with memory and problem solving, she also had difficulties making judgements and acting appropriately in social situations. She was no longer able to return to previous employment and needed supervision for all aspects of her daily living (including personal care, cooking, and safety in road crossing). Due to the amount of care required, social services could only offer residential facilities in elderly care and therefore Carrie returned to live in her parents' home. She attended vocational rehabilitation services (voluntary sector). However after two years she was only able to gain voluntary work. Support from vocational rehabilitation services was reduced due to funding and Carrie was not able to retain her day time placements. Her behaviour was challenging to carers and as a result there was a high turn over of 2

3 staff. Carrie ceased to make gains and this began to affect her mood. Her parents discovered that she was using significant amounts of alcohol and engaged in self harming behaviour. She was referred to psychiatry services however without a change in support in the community or meaningful day time activity, Carrie's mood did not improve. She was readmitted to the post-acute rehabilitation ward to deal with Carries complex social, behavioural and psychological difficulties. Services were not available in the local area to treat Carries or give her the rehabilitation she needed. Help was obtained from outside the area (at a cost of around 1500 per week) from specialist rehabilitation services to increase her independence, address her social functioning difficulties, treat her mood problems and provide cognitive rehabilitation. Local community expertise could have assisted in supporting Carrie's family and the carers that were working with her to understand and support her difficulties. They could also have worked with her to increase her independence and support her in appropriate and meaningful daytime activities, placements or work. This would represent a huge saving to NHS in terms of reduces pressure on services and reduced need for outside referral. These are two patient stories (with several details changed for confidentiality), which illustrate the costs of not having adequate support and accessible expertise for people with neurological disorders or injury to the person, their family and to local NHS and social services. There are significant numbers of patients and families in similar situations throughout Scotland. Experiences with Services In 2005, a new service for people with brain injury was established in Grampian, jointly funded by the national lottery, NHS Grampian and Aberdeen city, Aberdeenshire and Moray councils. This service provides two support workers to assist people with brain injury and their families to access social and practical advice and support. This service has been exceptionally successful. Many of our patients I clients who were socially isolated now have social opportunities in their local community with appropriate support. Family members have commented that they would have ceased to be able to cope without this support. Although it is difficult to evidence, we believe that several hospital re-admissions to rehabilitation services or mental health services have been prevented as a result of this support. This project is an excellent example of joint working and an initiative spanning across the services which has made a significant difference to the lives of people with brain injury and their carers. We work very closely with the voluntary sector service, Momentum, which provides vocational rehabilitation for people with brain injury. Unfortunately Momentum was not able to attract the European funding they had had in previous years, and this year has had to reduce their service. As a result the neuro-psychology service saw an increase in referrals as patients who had previously sought support from Momentum or were suitable for the service, were not longer able to access it. This has an affect 3

4 on the neuro-psychology waiting list, meaning that care for other patient groups (e.g. those with possible dementia awaiting diagnosis) was significantly delayed. Voluntary services have a significant contribution to make to the social and emotional support of patients with neurological disorders and injury. In many cases this promotes good mental health and reduces the need for referral to services within the NHS. It is therefore economical for the NHS to support voluntary services where they make a significant contribution to the well being of patients with long-term difficulties. Which key performance targets would best focus NHS Scotland on improving the patient and carer experience? Develop managed clinical networks for patient groups with neurological disorders or injury, such as acquired brain injury. Develop local community teams for people with neurological disorders or injury (this would be in keeping with the Grampian Brain Injury Strategy). Support from NHS for voluntary services to increase patient well being, in particular mental health, and therefore reduce the need for referral to NHS services and readmission to hospital. Long-term commitment to provide rehabilitation for long-term conditions to increase independence and reduce care (and ultimately to save the NHS money - evidence for this in next section). BEST VALUE Which aspects of this agenda would you prioritise? Identification of areas of variation in practise and take action to raise standards to those of the best performing boards. Services for people with brain injury are less than ideal across the country. There are examples of good practise in other areas representing inequality in services across Scotland. e.g. Glasgow has a brain injury community centre where people with brain injury and their families are offered support and therapy enabling increased independence, reduced care and promoting return to work. In Grampian there are no dedicated NHS or social service services for brain injured people or their families. Develop and embed the culture of team worldng across the services and work more effectively with partners in the local community. Team working is essential to the support and care of people with neurological disorder and injury. 4

5 ' Pursue an investment strategy that builds public voluntary and social economy. sector services supported by Neurosurgical advances mean that increasing numbers of people are surviving brain injury. The costs of brain injury to the individual and their family and to health and social services are considerable include acute medical care, medical care and therapy for physical and mental health difficulties, need for care and supervision, loss of contributions through being no longer able to work and the need for benefits. In addition the families of people with brain injury may have to give up employment or reduce hours to provide care and are at more risk from mental health problems. Rehabilitation can increase independence, reduce the need for care, address mental health difficulties and increase the chances of return to work. There is evidence that specialist rehabilitation can cause massive savings in the above areas over the lifetime of the brain injured person. e.g. Wood in 1999 showed that post acute community rehabilitation reduces costs by over 20,000 per year (nearly 2 million in a lifetime). Turner-Stokes et al present evidence that rehabilitation reduced dependency and care costs by up to 639 per week and that the highest reductions in care could be made in high dependency groups. Khan et al introduced a traumatic brain injury programme during initial treatment in hospital which included rehabilitation from the acute stages, education and involvement of the families and management by a TBI multidisciplinary team in sub-acute rehabilitation resulted in a reduction in average length of hospital stay from 30.5 to 12 days. In addition, community rehabilitation teams working in partnership may be able to generate income as many people with brain injury under take compensation claims which take into account the costs of rehabilitation. Some of the existing services in the NHS and social services may be redirected to specialist rehabilitation teams however in order for this to be successful additional funding would be needed. The long-term cost effectiveness however would be considerable. Develop incentives to shift the balance of carefrom hospital to community. Specialist teams for rehabilitation in the community would facilitate discharge (through co-ordinating access to appropriate services and support), make discharge more effective (i.e. make sure that people had appropriate support and services on discharge to increase the success) and therefore reduce re-admission. What specific actions should NHS Scotland take at a national, regional or local level to deliver best value? The development of local MCN's for brain injury as a first step to co-ordinating services and moving to a team based model. 5

6 Take a long-term view of the benefits of rehabilitation to individuals and services and the cost savings and provide investment in order to develop existing services to a level where they can provide cost effective services. Long-term commitment to work towards provision of local rehabilitation from specialist community based teams. What further opportunities do you see for ensuring best value through the cooperation and collaboration between NHS Scotland and its partners? The development of local specialist teams would give the opportunity for funding and staff to be provided through NHS~ social services and the voluntary sector in partnership. Recent personal Scotland. experiences that may help shape and reform services across In both the case studies described above in 'improving your experience of care~there was significant financial loss suffered by the patient and their family and local services from the costs of appropriate rehabilitation which needed to be provided out of area treatment (at over 1000 per week). There are many more people in each region of Scotland who~without proper rehabilitation~continue to require a high level of care. Local rehabilitation services are not only cost effective but improve quality of life and general health. What key performance targets would focus on best value for patients? Support for cost-effective services offering treatment and rehabilitation for longterm conditions. i.e. those which assist return to work or gaining employment~reduce the need for supervision and care, reduce mental health problems, reduce the need for readmission into hospital care and reduce the need for costly out of area specialist services. The formation of models of care and treatment involving collaboration of voluntary, NHS, social services and private agencies (where appropriate) to improve the qualify and effectiveness of services for patients and their families with long-term conditions such as neurological disorder or injury. Improve the mental health and well being of people with long term conditions, e.g. acquired brain injury, and their families. Decrease the hospital admission time for people with non-degenerative long-term neurological conditions. Access~for all people with long-term conditions and their carers (including neuro disorder and disease) to local expertise, support and specialist rehabilitation 6

7 TACKLING HEALTH INEQUALITIES Issues to consider How could the approach above be developed further to make a sustained impact on health inequalities? NHS Scotland needs to consider some of the health inequalities that are created as a result of patients with long-term conditions not receiving adequate care and treatment. e.g. People with brain injury are more likely to suffer from mental health problems and alcohol abuse. They often lose their job as a result of the brain injury, which creates poverty and may lead to a loss of their house. People with neurological injury or illness often lose income from having to give up work and family members may have to give up work to provide care. By providing appropriate specialist care and support to these patient groups, the NHS can prevent some of this deprivation and social inequality. Which aspects of the suggested approach would you prioritise? Learn from good local strategies and services and range of pilot programmes in place. already Grampian has seen some excellent developments in services for people with neurological disorders in the past 5 years, including: The development of the MCN for stroke and increased specialist services has made a significant impact on the mental health of patients with stroke and their families. A strategy for brain injury has been developed between NHS, social services and voluntary services, although the funding to support this is needed. Two community brain injury workers funded jointly by the national lottery, NHS and social services have greatly improved the support for people with brain injury and their families (although long-term funding insecurities mean this services may end). It is essential that these strategies and services continue to be supported. Build on 10 year 'choose life' strategy and ensure staff are better trained to help reduce the number of people who commit suicide. Studies have shown that risk of suicide in people with brain injury is between 2.7 and 4.1 times higher than the non-brain injured population and have estimated prevalence of attempted suicide at 18%. People with brain injury need to be recognised as a vulnerable group and access to appropriate support should be available. In addition those who support and care for this vulnerable group need to be aware of potential difficulties and have the resources to act quickly to address problems. What specific actions should NHS Scotland take to reduce inequalities 7

8 Address fmancial support for carers who wish to return to work. For many carers it is more cost effective to take on the majority of care rather than go out to work, however this creates a high burden on the family member in both the role of carer and family member. Address the health difficulties which cause social inequality at the source through providing local support, care and specialist rehabilitation to reduce the development of mental health problems, social isolation and in some cases suicide. What further opportunities do you see for taking this agenda forward through co-operation and collaboration between the NHS and its partners? Support for voluntary services who can prevent or reduce this inequality developing e.g. support vocational rehabilitation services in the voluntary sector who can assist people with long-term (non-degenerative) conditions to return to work! gain alternative employment. Have you any recent personal experiences that might help us shape and inform future actions across Scotland. In Grampian there is a voluntary service for vocational rehabilitation for people with brain injury. Unfortunately the funding to this service (which was from European sources) was reduced. Many of the patients who formally attended the service were re-referred to the Neuropsychology services in NHS Grampian with emotional or behavioural problems. Through assisting people to get back to work or find alternative employment this service enables people to continue to contribute to the economy and reduce social disadvantages. Which key performance targets would best focus NHS Scotland on tackling health inequalities across Scotland? Reduce the inequalities that are created as a consequence of long-term conditions including: Working in collaboration with social services and housing to allow people to remain in their own homes or be appropriately re-housed. Collaboration with specialist vocational rehabilitation services to increase rates of return to work of people with long-term (non-degenerative) conditions. Recognise the increased risk of mental health difficulties and suicide in people with brain injury and improve access to local specialist support. Access to a clinical neuropsychologist for people with mental health problems and neurological disorders who can specially adapt evidenced based interventions (such as CBT) for people with cognitive difficulties. 8

9 ANTICIPATORY CARE AND LONG TERM CONDITIONS How could the above approach be developed further to help anticipate healthcare problems and improve management of long-term conditions? Effective case management is exceptionally important, in particular to people with long term conditions where needs change over a life time e.g. the needs of a person with brain injury when she is 35 with 2 children under the age of 5 will be different than when she is 65 and has no dependants but perhaps additional medical problems. Case management can only be effective however if there is co-ordinated and effective support from other services. The 1 5t step to addressing this would be to establish MCN's with a view to the development of specialist community teams. Which aspects of the suggested approach would you prioritise and which conditions do you think should be regarded as clinical priorities? Provide intensive case management based on individual care plans which co-ordinate the services provided by whichever individual or organisation is most appropriate for patient needs. As mentioned above, effective case management in long-term conditions is essential as the needs of the patients change over their life-span and with changes in the condition (improvement or degeneration). Introduction of self-care strategy which will improve quality and accessibility... and utilise new technology to enhance home based care. There is a growing body of research that electronic aids cali assist people with cognitive deficits and result in increases in independence and decreases in care. Support for electronic based interventions may be a very cost effective way of reducing care costs. However it must be recognised that only certain patients would be able to benefit from this technology and resources for assessment, training and support would be needed. Ensure that ideas and initiatives from the voluntary sector are mainstreamed effectively where they are valued by patients and have demonstrated their effectiveness and sustainability. There are two projects in Grampian in the voluntary sector assisting people with brain injury - Momentum, the vocational rehabilitation service and Transitions, a support service for people with brain injury and their carers. Both of these services make a huge contribution to the social and emotional well being of people with brain injury and without their support we would have no doubt that referrals to NHS services would increase. Projects such as these should be supported. 9

10 Develop greater capacity for cognitive therapies and other psychological therapies. There is a need for specialist psychological assessment and intervention with people with neurological disorders in the following areas: Emotional Research estimates that depression occurs in between 24% and 42% of people with brain injury. People with brain injury are also more at risk from anxiety disorders, including post-traumatic stress disorder, and higher levels of psychiatric disorders are reported following brain injury including psychosis, personality disorder, major depression and alcohol abuse. The estimated prevalence of attempted suicide in people with brain injury is 18%. In addition, people with brain injury and other neurological disorders, may have cognitive problems which mean that psychological therapies may need to be adapted to take account of their difficulties. This requires specialist assessment and intervention from professionals experienced in working with cognitive difficulties and emotional problems. People with neurological disorders and emotional problems require assessment and possibly intervention from clinical neuropsychologists or clinical psychologist. Cognitive For people with neurological disorder or injury suffering from cognitive difficulties e.g. memory problems and difficulties with reasoning, cognitive rehabilitation can increase independence, reduce care and assist return to work. Clinical Neuropsychologists are specialist in this area however often interventions can be carried out by other professionals under the supervision of a neuropsychologist. Behavioural intervention Behavioural problems can occur with neurological. disorder or injury and include social inappropriateness, sexual inappropriateness, physical aggression and verbal aggression. These difficulties can be considerably detrimental to a person's quality of life and that of their families and carers. Therefore it is important that people with challenging behaviours as a result of their illness or injury have access to treatment from a clinical psychologist or clinical neuropsychologist. Specific conditions regarded as priorities Brain Injury People with brain Injury suffer from a complex range of difficulties including movement disorders, physical disabilities, sensory problems, communication difficulties, cognitive deficits, emotional problems and behavioural difficulties. This can affect all aspects of their life e.g. ability to retain work or study, ability to make judgements about safety, ability to carry out personal care tasks, ability to parent, ability to maintain relationships. Currently support for people with brain injury and their families varied widely across Scotland. Often services are poorly co-ordinated or do not exist. The complex difficulties of this client group mean that they require 10

11 specialist support and rehabilitation which is not available comprehensively in any area of Scotland. Specific actions Recognition of the complex needs of people with brain injury and moves towards co-ordination of services through development of local managed clinical networks for brain injury. A long-term view of the support, care and rehabilitation required for people with brain injury and their families through working towards specialist community teams for people with brain injury. Access to assessment from a neuropsychologist for people with long-term conditions which may cause cognitive difficulties (and therefore require the adaptation of therapy). Access to a clinical neuropsychologist for people with mental health problems and neurological disorders who can specially adapt evidenced based interventions (such as cognitive behavioural therapy) for people with cognitive difficulties. Training in identifying mental health difficulties for every professional and carer working with people with neurological disorders or injury which put that person at increased risk from emotional difficulties e.g. brain injury. 11

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