Scoping Study for Alcohol Related Brain Damage Final Report

Transcription

1 Axiom Consultancy Scoping Study for Alcohol Related Brain Damage Final Report March 2010 Prepared for: Research Advisory Group, Lanarkshire Alcohol & Drug Partnership (LanADP) Prepared by: Linda McCall, Principal Consultant Alistair McCrae, Principal Consultant Izabela Nowak, Consultant

2 Axiom Consultancy Contents Page Acknowledgements Executive summary Introduction 1 Alcohol related brain damage: context, prevalence and cost 3 Learning from others 9 The current service 12 Future service priorities 23 The way forward 28 Appendices: Appendix 1 Appendix 2 Appendix 3 References from literature review Discussion guides Case studies

3 Axiom Consultancy Acknowledgements The authors of this report would like to acknowledge everyone who contributed to this scoping study including: Aspire Arbias Glasgow Addiction Services Inverclyde Council Alcohol & ARBD Services Lanarkshire Alcohol and Drugs Partnership NHS Lanarkshire North Ayrshire Council Social Work Services North Lanarkshire Council South Lanarkshire Council Community and voluntary organisations from across Lanarkshire The Bridgework Project Users of the current alcohol related brain damage services in Lanarkshire and their carers.

4 Axiom Consultancy Executive Summary Background Lanarkshire Alcohol and Drug Partnership (LanADP) is tasked with developing and implementing a local strategy to reduce drug and alcohol problems across Lanarkshire. As part of its strategy, LanADP aims to reduce the level of alcohol and drug related harm at a community level and support individuals with alcohol and drug problems. Alcohol Related Brain Damage (ARBD) is a term used to cover a spectrum of conditions and disorders, including alcohol related dementia and alcohol related brain injury, conditions which have been induced by chronic alcohol consumption resulting in some degree of brain damage. Data from the Scottish Public Health Observatory (ScotPHO) indicates that Scotland has the highest incidence of ARBD in Western Europe. Support services for people with ARBD in the Lanarkshire area are currently provided by NHS Lanarkshire, North and South Lanarkshire Council, the Scottish Association for Mental Health (SAMH) in North Lanarkshire and Aspire Housing and Personal Development Services (Aspire) in South Lanarkshire. Methodology LanADP wished to commission research to identify options for a Lanarkshirewide delivery model for ARBD services. The research was conducted in five waves between April and December 2009 as follows: A literature review to identify statistics on ARBD prevalence and to highlight examples of best practice in ARBD services with the development of case studies of 6 examples of best practice Interviews with11 key informants involved in the planning and delivery of the current ARBD service provision across Lanarkshire and a focus group with 5 Consultant Psychiatrists in Lanarkshire Interviews with 8 service users and their carers Four workshops with representatives of local service planners and service providers to identify gaps in the current service and establish key priorities for the future service provision; One strategic workshop with service planners from NHS Lanarkshire, North Lanarkshire Council and LanADP to agree the preferred service model. Context, prevalence and cost Context ARBD is described as a spectrum of disorders which interfere with memory, attention, planning, judgement and processing of new information and which often affects the individual s ability to lead an independent life. In addition to the effects on cognitive functions, excessive long term consumption of alcohol has a harmful effect on organs, including the brain and the gastro-intestinal system, with the damage sustained reflecting a continuum from mild to severe.

5 Axiom Consultancy A Fuller Life: Report of the Expert group on Alcohol Related Brain Damage raises concerns that service provision is not meeting the needs of individuals with ARBD and their families. It emphasises the importance of early identification, as well as a whole system approach to ARBD service planning and provision to provide support for both the service user and their family to prevent social isolation and relapse. The report also identifies key factors which service provision needs to address, that of capacity and risk. Closing the Gaps in 2007 also made specific recommendations for service provision including: A model with lead agency responsibility The involvement of primary health care teams in identification, care coordination and treatment A whole person approach to service planning and the development of an integrated care plan with a single point of contact An anticipatory care approach, with a recovery focus, to service delivery Assessment and diagnosis to include specialist psychology, psychiatry and neuropsychology skills Staff training on the service pathway, service provision and mental health/substance misuse issues. Prevalence Statistics on ARBD are very limited. Due to the nature of the condition, many cases go undetected. The boundaries between NHS Lanarkshire and South Lanarkshire Council areas are also not co-terminous with many ARBD patients in CamGlen and the Northern Corridor receiving care in NHS Greater Glasgow and Clyde facilities. As a result it is possible that available figures on ARBD are an under-estimation of the true numbers of patients in Lanarkshire. In estimating prevalence, two main sources of information were used: Information Services Division Alcohol Statistics Scotland NHS Lanarkshire Patient Discharges. The data provided by ISD and NHS Lanarkshire indicated an increasing trend in ARBD discharges across Scotland and Lanarkshire per year. Discharges have been increasing in Lanarkshire at a significantly faster rate (more than 3 times the Scottish average) with particular increases amongst males aged and amongst individuals from more affluent areas. The literature review portrays ARBD as a continuum of conditions from mild to severe which are linked to excessive and long term use of alcohol. Although there is a lack of specific evidence, assumptions regarding the future prevalence of ARBD can be inferred from reviewing the data available on alcohol related discharges and discharges of patients with alcoholic liver disease. The data suggests that the prevalence for alcoholic liver disease in Lanarkshire is currently 7.34 per 10,000 population which would equate to a current prevalence in Lanarkshire of 466 cases.

6 Axiom Consultancy Based on an increasing trend of alcoholic liver disease discharges, it is estimated that the prevalence in the future could rise from 7.34 per 10,000 population to 8.81, increasing the number of cases from 466 to 564 across Lanarkshire. The data available, whilst limited, does suggest that an increasing number of ARBD cases can be anticipated in Lanarkshire and that, based on the figures for alcoholic liver disease, the increase could be in the region of 20%. Cost There is little available information on the true costs of providing support for clients with ARBD, either nationally or locally. However, based on the average costs available, which may not include the full cost of service provision, it appears that supporting ARBD clients maintain their independence in the community can be less than half of the cost of maintaining clients in hospital in-patient beds and around three quarters of the cost of supporting clients in residential care homes. In addition, improving the discharge process for ARBD clients into the community may help reduce repeated detox admissions which may, in turn, reduce the detox costs in Lanarkshire or, alternatively enable more patients to receive detox. Learning from others Six ARBD services in areas with similar demographic, socio-economic and deprivation profiles as Lanarkshire were profiled as case studies. The service models featured in the case studies were based on a 6 stage delivery programme offering interventions from prevention through to treatment and long term care. The models incorporated: Health improvement Carer support Crisis response Detox Assessment and care management Outreach and ongoing support. Whilst each service was designed specifically to meet the needs of local ARBD clients and had to take account of some contractual requirements specific to local areas, there were four key service themes which were common to each model as follows: 1. Client engagement: o Services were offering support to an increasingly younger client group, many of whom were homeless o Clients were offered the opportunity to self refer to the services and each model had clear eligibility criteria o Services were recognising the prevalence of dual disability amongst the client group, many of whom displayed presenting conditions other than ARBD

7 Axiom Consultancy 2. Service delivery: o Services were offering multi-agency intervention and multiagency delivery of services, combining health, social care and third sector providers o Each model had a clear service pathway and access to care. The service pathways were highly visible and well understood by the agencies involved in service signposting as well as service delivery o A recognition of 3 types of ARBD clients: Slow to recover - diagnosed brain damage and needing specialist support and accommodation with 24 hour care Stopped drinking and will accept intervention but may relapse. These clients were considered to benefit from: Recreation, social support & employment opportunities Own tenancy or supported accommodation Community Mental Health Team/primary care support Continues drinking and is resistant to intervention. These clients tended to present at a crisis point and often required: Outreach contact to encourage a breakthrough Adults With Incapacity Act intervention if their brain damage was causing a risk. o The service offerings reflected the continuum of ARBD conditions, with a range of services available dependent upon the extent of cognitive deterioration. In each case, there was a movement from short to long term care interventions, with an increasing focus on maximising client independence irrespective of length of care package and a clear recovery ethos 3. Service infrastructure: o Whilst the models had a multi-agency approach, each agency had clear responsibilities in service planning and delivery with one lead agency which co-ordinated the service o Each model used a single shared assessment approach, with protocols shared by each agency o Each model had a highly effective, shared system for sharing information amongst all agencies 4. Workforce planning & development: o The service models included developing frontline staff skills to address a lack of understanding of ARBD which was considered to be prohibiting prevention, early identification and diagnosis The 6 stage approach adopted by the service providers in the case studies, together with the 4 key themes, were used to assess the current ARBD service

8 Axiom Consultancy pathway in Lanarkshire and formed the basis of recommendations for a future service delivery model. The current service in Lanarkshire To compare the ARBD service in Lanarkshire with this suggested approach representatives of service planners, providers, users and carers were consulted to establish their perceptions of, and satisfaction with, the current service available for ARBD clients. Perceptions of the current service In general the feedback from service users and their families/carers on their experience of the current service was very positive. Service users and carers were keen to emphasise the quality of care they were receiving and none had any complaints about their service experience or their journey of care. Feedback from the service providers interviewed suggested 8 key concerns with the current service for ARBD client in Lanarkshire, namely: A lack of emphasis on health improvement, particularly regarding the benefits of good nutrition in caring for people with ARBD No consistent underpinning ethos for ARBD services, resulting in a lack of focus on rehabilitation and recovery in their care planning A lack of overall co-ordination for the service A lack of recognition of organisational roles and responsibilities for ARBD service provision amongst some organisations which engage with ARBD clients but for whom this is not their primary role A lack of clarity on responsibilities for assessment, resulting in delays in the development of care plans and ongoing support The omission of neuro-cognitive assessment in the current assessment process, potentially minimising the effectiveness of care planning A lack of support for carers throughout the ARBD service pathway. Current service pathway This feedback suggests that there is no smooth transition for ARBD clients though the six elements of the service. With little input from health improvement, the service pathway effectively begins with crisis response. Thereafter, the journey is dependent upon which organisation the client comes into contact with (ie their entry point) and their awareness of other organisations which can provide support. If the organisations providing crisis response are unfamiliar with the ARBD client group and the range of service offerings there is potential for the individual to progress no further in the pathway. Lack of clarity in responsibilities for conducting assessments appears to be causing delays in securing assessments for ARBD clients. The current assessment process also does not include neuro-cognitive assessment which the service providers interviewed felt minimised the effectiveness of current care planning for ARBD clients and further delayed the clients' progress through the service pathway.

9 Axiom Consultancy The service providers were also concerned that there was a lack of coordination and consistency in the approach to care planning, resulting in a lack of focus on rehabilitation and recovery in clients' final care plans. There were also concerns that the care planning route taken was too focused on residential care and less focused on supported living. With limited residential care available and a lack of focus on the use of outreach services for on-going care, several interviewees felt that this was further delaying the client's journey towards the final stage in the service pathway. Initial feedback from the service provider interviews also suggested that the ARBD service pathway was not clearly understood and could potentially be affecting the clients service experience and service journey. Feedback from the service providers and a review of the services available for North and South Lanarkshire suggested that: Understanding of the range of service providers is very limited There is considerable difference in the extent of availability of support in each service element between North and South Lanarkshire, with considerably more availability in North than South Lanarkshire. The ARBD service delivery in both areas is heavily dependent on organisations for whom ARBD is not their primary client group and, therefore, with staff who will be unfamiliar with the service pathway and inexperienced in supporting ARBD clients Virtually all crisis response in Lanarkshire is provided by organisations which do not provide ARBD services as part of their primary service offering. Given that crisis response is often an ARBD client's first entry point into the service pathway, if staff in these organisations do not recognise a potential ARBD client when they attempt to engage with their service, many people may not be receiving the support they need. In addition to this, if they are unfamiliar with the full range of referral options in the service pathway, ARBD clients may not be receiving effective referrals. Future service priorities Thirty representatives from health, local authority and voluntary sector providers were invited to input their ideas for a future ARBD service in Lanarkshire. The workshop participants suggested a range of actions which they felt would improve the current service or which they thought needed to feature in any future service. This resulted in the following priorities for: Service delivery for each of the 6 service elements Service infrastructure Workforce planning and development Service delivery priorities The workshop participants identified 13 priorities which they believed were key to improving the delivery of ARBD services in Lanarkshire. These were in descending order of importance: Increase the use of Pabrinex & vitamins in care planning Increase the emphasis on Life Skills in assessment and care planning

10 Axiom Consultancy Include continuing drinkers in outreach services Increase the focus on outreach Develop a community rehabilitation link with care homes Develop a clearer ARBD link in the North Lanarkshire Integrated Addictions Service/LAADS Increase the options for detox Ensure care plans in care homes emphasise recovery Extend the rehabilitation model in care homes to under 65s Develop a more flexible outreach service Develop a long term approach to care Introduce regular review to move people on from care homes Provide neuro-cognitive assessment. In addition to these key priorities, the workshop participants also suggested two services which they felt would add value to the model, namely: Increasing the emphasis on prevention activities in health improvement Developing ARBD specific health improvement messages Accommodation is a key component of care planning for people with a range of complex difficulties such as those on the spectrum of ARBD. Given the joint work currently undertaken by health, housing and social work services to ensure that the most vulnerable homeless population opportunity exists to intervene with the ARBD population. This will be shaped by the development of supported accommodation alongside the overall strategy of personalisation and the shared agenda this promotes. Service infrastructure priorities The workshop participants also identified 6 priorities which they believed were key to improving the service infrastructure in Lanarkshire. These were, in ascending order of importance: Improve the recording of information when ARBD clients contact services Widen the membership of the ARBD steering group Map out the pathway for Adults With Incapacity (AWI) and Adult Support & Protection (AS&P) for staff Incorporate ARBD care planning into Locality Planning Groups Adopt harm reduction model for ARBD Develop pathway for diagnosis based on the approach taken with Memory Clinic Workers. In addition to these key priorities, the workshop participants also suggested the following actions would add value to the infrastructure: Create a patient profile to recognise cognitive impairment Create a single protocol for staff working with ARBD clients.

11 Axiom Consultancy Workforce planning and development priorities Workforce development was rated by the workshops participants as the number one priority for any future service provision. Participants were concerned at the potential impact on ARBD clients of staff lack of awareness and understanding of the service pathway and the needs of the client group. As a result, they wanted training to be developed and provided for all staff supporting ARBD client, including staff employed in residential care homes across Lanarkshire. In addition, they suggested that the care pathway be mapped out and made available to staff to improve their understanding of the range of service providers, improve the links between existing services and increase their confidence in referring ARBD clients to appropriate providers. In addition to these suggestions, the workshop participants also suggested the following actions which they thought would improve the skills and confidence of the ARBD workforce: Raising all staff awareness of their health improvement responsibilities Clarify who is responsible for conducting cognitive assessments in the service Clarify the allocation of roles in service delivery between health and social care staff. The way forward Based on the feedback from service providers and service users gathered during the course of this scoping study, we believe that a future ARBD service in Lanarkshire should incorporate: An anticipatory care model which would facilitate: o The development and communication of key health improvement methods through primary care staff to raise awareness of the risks of prolonged and heavy alcohol consumption o The earlier identification of individuals at risk of developing ARBD. A recovery ethos to underpin each element of the service delivery, particularly Assessment & Care Management and Outreach & Ongoing Support. This would encourage a consistent approach to the development and implementation of an ARBD client's on-going care plan An increased emphasis on community services, including outreach services. This would help to reduce the dependency on residential care and, potentially, speed up an ARBD client's progress through the service pathway A programme of workforce development aimed at improving staff understanding of the ARBD service pathway and increasing their confidence in being able to recognise and support individuals displaying ARBD symptoms. The workforce development programme would help facilitate: o o Earlier identification of people at risk of ARBD More effective crisis response for individuals suffering from ARBD

12 Axiom Consultancy o An enhanced client journey through the service pathway through more effective contact and engagement with service providers. In addition, it may be of benefit to try to establish what savings for the acute sector could be made if community intervention and support was more effective in engaging with ARBD clients. For example, the 300 detoxifications conducted were not 300 separate patients but included individuals who received more than one detox. If it were possible to improve the discharge process for these clients into the community this may reduce the number of detoxes or repeat detoxes and prevent the "revolving door". Reducing the number of repeat detoxes may either generate service savings or could enable the service to provide detoxification for a larger number of patients. An action plan outlining the short, medium and long term priorities for supporting ARBD clients in Lanarkshire has been prepared based on the feedback from this scoping study.

13 Axiom Consultancy 1 Section 1: Introduction 1.1 Background Lanarkshire Alcohol and Drug Partnership (LanADP) is a partnership involving North and South Lanarkshire Councils, NHS Lanarkshire, Strathclyde Police, Strathclyde Fire and Rescue, Scottish Prison Service, Crown Office and Procurator Fiscal, the Scottish Drugs Forum and the voluntary sector services. It is tasked with developing and implementing a local strategy to reduce drug and alcohol problems across Lanarkshire. LanADP set out, in 2008, a three year strategy to address the alcohol and drug issues faced by individuals, families and communities. As part of this strategy, LanADP aims to reduce the level of alcohol and drug related harm at a community level and support individuals with alcohol and drug problems. Alcohol Related Brain Damage (ARBD) is recognised by the Scottish Government Health Department as an increasing issue in Scotland and one which needs to be addressed if it is to achieve its objective to improve the nation s health. ARBD is a term used to cover a spectrum of conditions and disorders, including alcohol related dementia and alcohol related brain injury, conditions which have been induced by chronic alcohol consumption resulting in some degree of brain damage. Data from the Scottish Public Health Observatory (ScotPHO) indicates that Scotland has the highest incidence of ARBD in Western Europe, with rates of discharges from hospital with alcohol related problems increasing annually, particularly in the West of Scotland, in areas with multiple deprivation. Support services for people with ARBD in the Lanarkshire area are currently provided by NHS Lanarkshire, North and South Lanarkshire Council, the Scottish Association for Mental Health (SAMH) in North Lanarkshire and Aspire Housing and Personal Development Services (Aspire) in South Lanarkshire. 1.2 Research objectives As part of its three year strategy, LanADP wished to commission research to identify options for a Lanarkshire-wide delivery model for ARBD services. In particular, it wished the study to: Review and contextualise the existing literature, strategy and policy documentation on ARBD Identify best practice examples of ARBD services locally, nationally and internationally with particular emphasis on those that could be applied in a Lanarkshire setting Conduct a needs assessment exercise to establish a clearer picture of potential demand for local ARBD services Identify and recommend a preferred service model of Lanarkshire taking into account local area demographics, cost effectiveness and resource assumptions

14 Axiom Consultancy 2 Undertake an impact assessment using the preferred model of service provision. 1.3 Methodology A combination of literature review, case study development and stakeholder engagement using one-to-one depth interviews, focus groups and workshops was adopted. The literature review sought to establish statistics on the prevalence of ARBD nationally and locally, together with the key factors necessary to provide effective ARBD interventions and the availability of best practice models across the UK and internationally. The in-depth interviews, focus groups and workshops provided a rich insight into the suitability of the current service model for ARBD clients and their families, together with key enablers required to address future needs. The research was conducted in five waves as follows: A literature review to identify statistics on ARBD prevalence and to highlight examples of best practice in ARBD services Development of case studies of 6 examples of best practice Interviews with11 key informants involved in the planning and delivery of the current ARBD service provision across Lanarkshire A focus group with 5 Consultant Psychiatrists in Lanarkshire Interviews with 8 service users and their carers Four workshops with representatives of local service planners and service providers to identify gaps in the current service and establish key priorities for the future service provision; One strategic workshop with service planners from NHS Lanarkshire, North Lanarkshire Council and LanADP to agree the preferred service model. The research took place between April and December 2009 and the research participants were sourced as follows: Key informants (interviews and workshops) a cross section of service planners and providers from organisations currently providing support to ARBD clients across Lanarkshire from health, social care and the community and voluntary sectors Consultant psychiatrists a cross section of Consultants currently treating ARBD clients in Lanarkshire Service users and carers from clients currently receiving support from health, social care and voluntary sector organisations The findings and recommendations from this scoping study are detailed in Sections 2 6 of this report. Copies of the discussion guides used in the interviews and focus groups can be found in Appendix 2.

15 Axiom Consultancy 3 Section 2: Alcohol Related Brain Damage: Context, prevalence and cost 2.1 Context Alcohol Related Brain Damage (ARBD) refers to the effects that long term consumption of alcohol can have on the structure and function of the brain, usually resulting from a combination of the toxic effect of alcohol on the brain, vitamin deficiencies and disruption of blood supply to the brain. It encompasses a number of conditions including: Wernicke s Encephalopathy severe vitamin B1 deficiency Korsakoff s Amnesic Syndrome loss of short term memory Alcohol-related frontal lobe system and cerebellar syndromes, which frequently co-exist with head injury, cerebrovascular disorders, encephalopathy and nutritional deficiency syndromes. ARBD is described as a spectrum of disorders which interfere with memory, attention, planning, judgement and processing of new information and which often affects the individual s ability to lead an independent life. In addition to the effects on cognitive functions, excessive long term consumption of alcohol has a harmful effect on organs, including the brain and the gastro-intestinal system, with the damage sustained reflecting a continuum from mild to severe. A Fuller Life: Report of the Expert group on Alcohol Related Brain Damage raises concerns that service provision is not meeting the needs of individuals with ARBD and their families. It emphasises the importance of early identification, as well as a whole system approach to ARBD service planning and provision to provide support for both the service user and their family to prevent social isolation and relapse. The report also identifies key factors which service provision needs to address, that of capacity and risk. The report recognises the grey areas presented by the ARBD conditions which impact upon the individual s capacity and can create fluctuating risk. It recommends regular reviews and reassessment throughout the course of a clients care package to better manage the balance and to ensure effective harm minimisation. Studies also recognise that individuals with alcohol and substance misuse problems often experience a range of other health issues, including mental health problems. Mind the Gaps: Meeting the Needs of People with Coocurring Substance Misuse and Mental Health Problems highlighted issues with service provision including: A narrow model of assessment and care Omission of aftercare in treatment planning Lack of communication between addiction and mental health services Lack of clarity in defining problems and assessing needs Lack of core competencies and training for staff A resultant reluctance by staff to support individuals in this client group.

16 Axiom Consultancy 4 The report recommended a number of factors which are seen as critical to effective service provision, including: A person centred planning approach Early intervention to ensure appropriate referrals A broad range of interventions to include social, education, employment and advocacy factors. These factors were reiterated in Closing the Gaps in 2007 where specific recommendations were made for service provision which included: A model with lead agency responsibility The involvement of primary health care teams in identification, care coordination and treatment A whole person approach to service planning An anticipatory care approach, with a recovery focus, to service delivery The development of an integrated care plan with a single point of contact; Assessment and diagnosis to include specialist psychology, psychiatry and neuropsychology skills Staff training on the service pathway, service provision and mental health/substance misuse issues. These recommendations for the foundations of ARBD service provision were used to inform the literature search undertaken to identify examples of best practice models from elsewhere in the UK and internationally. The outcome of this search is presented in Section Prevalence Two main sources of information were used in assessing the likely prevalence of ARBD in Lanarkshire: Information Services Division Alcohol Statistics Scotland NHS Lanarkshire Patient Discharges The boundaries between NHS Lanarkshire and South Lanarkshire Council areas are not co-terminous and many ARBD patients in CamGlen and the Northern Corridor are receiving care in NHS Greater Glasgow and Clyde facilities. As a result these patients do not feature in these statistics resulting a potential under-estimation of the numbers of ARBD patients in Lanarkshire. Statistics on ARBD are very limited. Due to the nature of the condition, many cases go undetected. In addition to this, particularly in psychiatric hospitals, ARBD is not the main presenting condition and may not therefore be accurately recorded on admission or discharge. As a result, it is highly likely that the figures presented below are an under-estimate of the true prevalence of ARBD in Lanarkshire. Table 1, below, indicates the total number of patients discharged with an ARBD condition. The Scottish figures are provided by ISD, at the time of

17 Axiom Consultancy 5 review, were only available up to The figures for Lanarkshire have been provided by NHS Lanarkshire and were available for 2006 to the first quarter of 2009 (January to March). NHS Lanarkshire were also able to provide figures demonstrating both the total number of discharges and the actual number of patients discharged. Table 1 ARBD Discharges, General Hospitals Area Jan - Mar Scotland North Lanarkshire South Lanarkshire Total for Lanarkshire (31)* (52)* 57 (50)* 19 (19)* * Denotes actual number of individual patients discharged Table 1 illustrates the increasing number of discharges across Scotland per year, with a 47% increase in ten years. The data also indicates a significantly larger increase in discharges over this time frame in Lanarkshire, with an increase of 159%. The data also suggests that, in Lanarkshire, the numbers of discharges have increased considerably since It should also be noted that, in the first quarter of 2009, 19 patients had been discharged with ARBD conditions only 3 short of the total number of discharges in 1998 and 50% of the discharges in NHS Lanarkshire was also able to provide a profile of the discharges between 2006 and the first quarter of Table 2, below indicates that the majority of patients are male and that the numbers of males has doubled in the last 3 years shown. The numbers of females has remained relatively static. Table 2 ARBD Discharges, Number of Patients by Gender Gender Male Female The data in Table 3 suggests that the majority of patients discharged with ARBD conditions are aged 60 and over. However, an increasing number of younger patients have been discharged in 2007 and 2008 (the youngest being aged 38). This trend appears to be continuing in 2009 given that the first quarter of the year has already seen 50% of the number of discharges in 2007 and 2008.

18 Axiom Consultancy 6 Table 3 ARBD Discharges, Number of Patients by Age Age Jan - Mar The literature review suggested that there may be a link between ARBD and deprivation. Table 4 seems to confirm that suggestion as the numbers of discharges of patients living in areas of high deprivation (categories 4 & 5) are considerably higher than patients living in areas of lower deprivation (more affluent areas). However, it should be noted that the numbers of discharges of patients living in areas 1-3 are increasing. In 2006, 4 patients were discharged from highly deprived area for every one patient discharged from a more affluent area. In 2009 the ratio was 3:1 suggesting an increase in the numbers from more affluent areas. Table 4 Category ARBD Discharges, Number of Patients by Deprivation Scottish Index of Multiple Deprivation (SIMD) Category Jan - Mar & The literature review portrays ARBD as a continuum of conditions from mild to severe which are linked to excessive and long term use of alcohol. Although there is a lack of specific evidence, assumptions regarding the future prevalence of ARBD can be inferred from reviewing the data available on alcohol related discharges and discharges of patients with alcoholic liver disease. In addition to an increasing picture of ARBD discharges over the last 10 years, the data on alcohol related discharges and alcoholic liver disease (Tables 5 & 6) suggests that further increases in ARBD can be anticipated in the future. Table 5 Alcohol Related Discharges, General Hospitals Area Scotland Lanarkshire North Lanarkshire residents South Lanarkshire residents

19 Axiom Consultancy 7 Table 6 Alcoholic Liver Disease, General Hospitals Area Scotland Lanarkshire North Lanarkshire residents South Lanarkshire residents The data in Tables 5 & 6 indicate increases in both alcohol related discharges and alcoholic liver disease in Scotland and in Lanarkshire. However, the data suggests that the increase in alcoholic liver disease is greater in Lanarkshire, suggesting that Lanarkshire could anticipate a higher than the Scottish average increase in ARBD cases in the future. Tables 5 & 6 outline a: 13.6% increase in all alcohol related discharges in Lanarkshire compared to a 14.5 % across Scotland. Although the increase across Lanarkshire is slightly lower than the national average, there is a significant difference in rates between North and South Lanarkshire (17% compared to 9% respectively) with North Lanarkshire experiencing alcohol related discharges at a higher rate than the Scottish average. 20% increase in alcoholic liver disease in Lanarkshire compared to 14% across Scotland. This is higher than the national average. There is also a considerable difference between North and South Lanarkshire, with North Lanarkshire experiencing almost twice the Scottish average for alcoholic liver disease. Overall, the data suggests that the prevalence for alcoholic liver disease in Lanarkshire is 7.34 per 10,000 population. The population in 2008 in Lanarkshire was 635,610, broken down as follows: 325,520 in North Lanarkshire Council 310,090 in South Lanarkshire Council Given these population figures and the prevalence for alcoholic liver disease, it is estimated that the current prevalence for Lanarkshire is 466 cases: 238 in North Lanarkshire Council 228 in South Lanarkshire Council. Based on the data from Table 6 which indicates an increasing trend of alcoholic liver disease discharges, it is estimated that the prevalence in the future could rise from 7.34 per 10,000 population to 8.81, increasing the number of cases from 466 to 564 across Lanarkshire. The data available, whilst limited, does suggest that an increasing number of ARBD cases can be anticipated in Lanarkshire and that, based on the figures for alcoholic liver disease, the increase could be in the region of 20%.

20 Axiom Consultancy Service costings There is little available information on the true costs of providing support for clients with ARBD, either nationally or locally. In the case of the health service, the support provided for ARBD clients tend to be provided from within psychiatric or acute services and their assessment and treatment costs are subsumed within the overall operating costs for these services. In the case of social work services, the costs are subsumed within the general costs for providing long term care home provision From a review of the Scottish Health Service Costs available from Information Services Division Scotland (known as the Costs Book) and information provided by the Community Psychiatric Nurse Liaison Service in Lanarkshire, Aspire, Bridgework and Inverclyde Council we have been able to estimate the costs of providing support for ARBD clients in Lanarkshire. These are outlined in Table 7 below. Table 7 Service costs (as at November 2009) Type of service Total annual cost Cost per client per week General psychiatry in patient Not applicable 1,242 Detox 532,000 (for 300 detoxes with an average stay of 10 1,774 (for a 10 day stay) days. Clients may have more than one detox) Aspire (Rutherglen & 114,000 (Supported living 313 Cambuslang) for 7 clients) Bridgework 137,000 (supported 659 accommodation for 4 clients) Care homes (various across Lanarkshire) 28,000 per place 538 Inverclyde Council 350,000 (supported 420 accommodation for 16 clients) These figures are indicative only and are based on average costs which may not include the full cost of service provision. However, they do suggest that endeavouring to support ARBD clients maintain their independence in the community can be less than half of the cost of maintaining clients in hospital in-patient beds and around three quarters of the cost of supporting clients in residential care homes. In addition, many ARBD clients are admitted for more than one detox. Improving the discharge process for these clients into the community may help reduce these repeated admissions which may, in turn, reduce the detox costs in Lanarkshire or, alternatively enable more patients to receive detox.

21 Axiom Consultancy 9 Section 3: Learning from others A literature review was conducted, combining searches in a range of journals and databases and specialist organisations websites. Sources included NHS Scotland e-library, the British Medical Journal, the Journal of Social Work, Oxford Journals, the University of Stirling Drug and & Alcohol Database, Arbias and the Disability Information Centre in New South Wales. The search was looking for ARBD services in areas with similar demographic, socio-economic and deprivation profiles as Lanarkshire. The search identified 11 services which specifically targeted individuals with ARBD from across the UK and from Australia, Canada and the United States of America, from which the following 6 were selected and profiled as case studies: Arbias in Melbourne, Australia who provide a range of support for people with ARBD in residential and community settings using a Continuum of Care delivery model Aspire in Rutherglen/Cambuslang who, using a person centred planning approach, provide outreach and supported living for people with ARBD to support them retain their own tenancies Bridgeworks Project in Bellshill who provide supported accommodation and outreach for homeless individuals (some with ARBD) to allow them to develop the skills necessary to support their own tenancies Glasgow Addition Services who provide a range of support services, managed by a specialist ARBD team, for individuals across the mild to severe ARBD continuum Inverclyde Council who provide a range of support services, managed by a specialist ARBD team, for individuals across the mild to severe ARBD continuum including purpose built accommodation North Ayrshire Council who has employed a specialist ARBD social worker to develop specific assessment and care management protocols to improve the effectiveness of the service pathway and client journey. The purpose of this review was to learn from these service providers any key factors which were considered to be essential to delivering effective support for ARBD clients. Interviews were conducted with representatives from each of these services to explore the support provided, the extent to which the service and support had been tailored to meet the needs of the ARBD client group, the resources required to deliver the service and the methods used to contact and engage with service users, current and potential. Each service was profiled and copies of these profiles can be found in Appendix 3. The service models featured in the case studies were based on a 6 stage delivery programme offering interventions from prevention through to treatment and long term care. The models incorporated: Health improvement Carer support Crisis response Detox

22 Axiom Consultancy 10 Assessment and care management Outreach and ongoing support. Whilst each service was designed specifically to meet the needs of local ARBD clients and had to take account of some contractual requirements specific to local areas, there were four key service themes which were common to each model as follows: 5. Client engagement: o Services were offering support to an increasingly younger client group, many of whom were homeless o Clients were offered the opportunity to self refer to the services and each model had clear eligibility criteria o Services were recognising the prevalence of dual disability amongst the client group, many of whom displayed presenting conditions other than ARBD 6. Service delivery: o Services were offering multi-agency intervention and multiagency delivery of services, combining health, social care and third sector providers o Each model had a clear service pathway and access to care. The service pathways were highly visible and well understood by the agencies involved in service signposting as well as service delivery o A recognition of 3 types of ARBD clients: Slow to recover - diagnosed brain damage and needing specialist support and accommodation with 24 hour care Stopped drinking and will accept intervention but may relapse. These clients were considered to benefit from: Recreation, social support & employment opportunities Own tenancy or supported accommodation Community Mental Health Team/primary care support Continues drinking and is resistant to intervention. These clients tended to present at a crisis point and often required: Outreach contact to encourage a breakthrough Adults With Incapacity Act intervention if their brain damage was causing a risk. o The service offerings reflected the continuum of ARBD conditions, with a range of services available dependent upon the extent of cognitive deterioration. In each case, there was a movement from short to long term care interventions, with an increasing focus on maximising client independence irrespective of length of care package and a clear recovery ethos

23 Axiom Consultancy Service infrastructure: o Whilst the models had a multi-agency approach, each agency had clear responsibilities in service planning and delivery with one lead agency which co-ordinated the service o Each model used a single shared assessment approach, with protocols shared by each agency o Each model had a highly effective, shared system for sharing information amongst all agencies 8. Workforce planning & development: o The service models included developing frontline staff skills to address a lack of understanding of ARBD which was considered to be prohibiting prevention, early identification and diagnosis The 6 stage approach adopted by the service providers in the case studies, together with the 4 key themes, were used to assess the current ARBD service pathway in Lanarkshire and formed the basis of recommendations for a future service delivery model.

24 Axiom Consultancy 12 Section 4: The current service The case studies suggest that an ARBD service should consist of the following elements. Awareness Health Improvement Contact & Engagement Crisis Response Carer Support Service Delivery Detox Assessment & Care Management Outreach & Ongoing Support

25 Axiom Consultancy 13 In order to compare the ARBD service in Lanarkshire with this suggested approach, interviews were conducted with 11 key informants involved in the planning and delivery of the current ARBD service provision across Lanarkshire and 8 service users and their carers. A focus group was also conducted with 5 Consultant Psychiatrists in Lanarkshire. The interviews and focus group were then supplemented with four workshops of a cross section of service providers from health, social work and voluntary agencies across Lanarkshire. The purpose of the discussions was to establish interviewee perceptions of and satisfaction with the current service available for ARBD clients. 4.1 Perceptions of the current service In general the feedback from service users and their families/carers on their experience of the current service was very positive. Service users and carers were keen to emphasise the quality of care they were receiving and none had any complaints about their service experience or their journey of care. In discussing their experiences, it became apparent that all of the service users had come to the attention of the health or social services as a result of a crisis. The crisis was often in connection with: Problems with tenancies Money issues Behavioural problems resulting in the involvement of the criminal justice agencies A&E admissions/detox. There were similarities in their patient journey also. In each case, the individual with ARBD had been admitted several times as an in-patient to psychiatric wards and undergone several detoxes (hospital and community) over time. All of the service users were now receiving assistance with supported living in the community. The service providers interviewed represented a sample of organisations which engage with ARBD clients on a fairly regular basis from health, social care and voluntary sectors in Lanarkshire. The interviewees were agreed with the Research Advisory Group established to oversee this scoping exercise and included staff from NHS Lanarkshire, North Lanarkshire Council and South Lanarkshire Council. Feedback from the service providers and service users and carers interviewed on their perception of the current service is outlined below and has been mapped out against each of the six service elements highlighted from the case study review of exemplar delivery models.

26 Axiom Consultancy Health improvement Despite the important role nutrition and vitamins can play in minimising the effects of ARBD on an individual's cognitive functions, none of the service providers interviewed felt that ARBD received sufficient attention in health improvement messages, locally or nationally. Lack of information and advice surrounding the nutritional implications of sustained alcohol abuse was of particular concern and many felt that more emphasis on nutrition, in particular, was needed in health improvement activity for this client group. Whilst health improvement features in health service staff roles and responsibilities few interviewees felt confident in discussing the health improvement issues surrounding ARBD with either ARBD clients or their carers. Those who did were generally in services which dealt regularly with ARBD cases and had received some training in ARBD and its associated conditions. Other interviewees in non ARBD specific services felt that their knowledge of the health improvement issues was not sufficient to allow them to be comfortable in discussing health improvement issues with ARBD clients. The outreach workers working with supported living ARBD clients had a very clear understanding of the importance of diet and nutrition. Much of the support they provide surrounds ensuring that their client has nutritional food available and is able to prepare and eat nutritional meals. However, the service users and carers indicated that, prior to meeting the outreach workers, they were unaware of any health improvement messages, such as the importance of thiamine in an ARBD client s diet Carer support Carer support features in each of the service delivery models profiled in the case studies. However, carer support was regarded as a key weakness in current service delivery in Lanarkshire by both service providers and service users and carers. Whilst the carers interviewed were highly complementary about the support they received from the outreach workers, they all suggested that this was the first time they had enjoyed any support. The service providers interviewed felt that supporting ARBD carers was not seen by the statutory agencies as a key responsibility and often left to the voluntary sector to fill the gap. In addition to this, services which were available were seen as often inflexible and unable to meet the needs of carers due to the demands of their service provision. The home care services provided by both Councils were frequently cited as an example of delivery which lacked the necessary flexibility to support the ARBD client group effectively. Carers in particular expressed concern that the requirement to deliver home care services at a set time every day conflicted with the often chaotic lifestyle of the ARBD client. Carers were also concerned that home care staff appeared unfamiliar with the behavioural