NHS North of England Yorkshire and the Humber Regional Programme for the Health and Wellbeing of People with Learning Disabilities Report on Yorkshire and the Humber 2012 Health Self Assessment Exercise Heather Raistrick Associate Director Mental Health and Learning Disabilities 1
Yorkshire and the Humber Regional Programme for the Health and Wellbeing of People with Learning Disabilities Report on Yorkshire and the Humber 2012 Health Self Assessment Exercise Introduction This report describes the main findings from the recently completed annual self assessment the fifth such exercise to be undertaken since 2007-08 when the Region was the national pilot site for this way of working. Over the past five years the region s learning disability programme and its annual self assessment process continues to show a sustained commitment by all partners in the health economy to improving the health and wellbeing of people with a learning disability, even in times of considerable change and uncertainty about the future for both organisations and individual champions. In Yorkshire and the Humber it is now possible to identify innovative good practice and also service deficits or health inequalities experienced by people with a learning disability. The new clustering arrangements and the involvement of the Executive Directors of Nursing for most of the clusters has both strengthened the process and given the opportunity to learn and improve practice across the whole of the cluster rather than just individual PCTs. Work done over the past five years has strengthened commissioning processes and offered a foundation and rationale for service development, generating additional investment in new posts and services. Most importantly, in some areas, people with a learning disability and families and carers have become increasingly involved and included in health service planning, commissioning, and delivery. The challenge for the future is to maintain progress both through the transition period and support the commissioners of the future to understand their responsibilities and continue to improve the health of people with a learning disability at the same time as keeping them safe,. In the context of the government s health and social care reforms, the past 12 month period has seen considerable change in how health and social care organisations work, and in leadership and management functions. Statutory organisations across the spectrum of both health and social care are required to make substantial efficiency savings, at the same time as moving towards a new structure and way of operating with Clinical Commissioning Groups, Clinical Support Services and Health and Wellbeing Boards emerging. Add to the landscape the dreadful events that emerged in May 2011 at Winterbourne View, an independent private hospital, and the last year has been very challenging for organisations, commissioners, services, people. and families. In the face of this all areas should be congratulated for having continued to consolidate, and in some cases build on, the commendable progress they have made in the past few years. 2
The process this year Following the events of May 2012 and the abuse at Winterbourne View, the Government announced a review of Learning Disability Services. The review included the inspection by CCQ of 150 Learning Disability Services across the country, an internal investigation by CCQ, a serious case review and an enhanced assurance exercise which was led by the SHAs. The Department of Health has published an interim report with the final report expected in the autumn. The enhanced assurance exercise led to a number of outcomes, one being that the Self Assessment Process for coming years needed to focus more on safeguarding and ensure that people were placed in appropriate placements and that these placements were reviewed regularly and robustly. Therefore, the process changed from having four top targets to three objectives:. Access to Health. Including numbers of people on LD registers, access to screening programmes, take up of the DES, Annual Health Checks and Health Action planning. People with complex needs. Ensuring the JSNA reflect this population, young people in transition and people in the criminal justice system. Safeguarding. To ensure that PCT and Partnership Boards could assure themselves across all their commissioners and providers that people were safe and in placements that were appropriate and regularly reviewed. For the first time the Self Assessment was completed electronically, which in itself led to a number of technical issues making it very difficult to complete the form for submission. Areas were asked to ensure that the information from themselves, other commissioners and providers was comprehensive enough to describe the rationale for their self-assessed level of progress. Some areas found it difficult to engage the full range of providers in the given timescales and the changing landscape they found themselves in. The validation part of the process has allowed the SHA to form an overview of work and ongoing progress, and to gain assurance that local governance and good commissioning processes are creating the right environment for that work to continue. The decision has been taken this year not to produce a Yorkshire and Humber RAG rating. Each of the PCT Cluster Chief Executives are aware of all the RAG ratings for their own cluster and the decision remains at a local level as to whether or not this information is shared across the cluster. Each of the PCTs, Partnership Boards and the Directors of Adult Services know their individual RAG ratings. It is expected that this information is shared with the emerging Clinical Commissioning Groups, Clinical Support Services, Health and Wellbeing Boards and the Specialist and Acute Trust Chief Executive The reason for not producing a RAG rating across Yorkshire and Humber is based on the fact that each of the PCTs are in a different position within this transitional year and would not be comparing like for like when they are all starting from a different place. 3
Feedback from People and Families Areas have tried very hard to make the process inclusive. People and families have found this year s process very different from last year and feel that the form left very little for them to contribute to. People felt the questions were very health-focused and did not consider how good health care can have a positive impact on people s lives. In addition it was felt the framework was more concerned about process rather than outcomes. One family member commented that the nature of the form and how the questions were asked made it impossible for users and carers to understand exactly what the SHA required. This theme was repeated many times across the region and most felt that the changes to the submission this year did not fully allow involvement to happen. This feedback will be passed from the SHA to the national team and will be taken into account when designing next year s process. 2012 Self Assessment Objective One - Access to Health This objective continues to highlight the need for much better information about people s health, to improve people s access to and their experience of mainstream health services, including screening programmes. The areas that had robust data about the number of people, through LD registers and other methods of identifying people, who have access to mainstream health are in a stronger position to plot progress. Some areas were able to triangulate information and data from the QOF register to the learning disability register, to the JSNA and the information from the PHO.Emerging evidence suggests that, in some health areas, people have access to disease prevention, health screening and health promotion, although the common theme highlighted through the process is the lack of data about the actual numbers of people, with some PCT areas reporting it would be difficult to collect this data with the existing systems they have. Most areas have made progress in their plans to improve key aspects of health care in general hospitals, with the increase in better information systems and flagging with some GPs highlighting the need for reasonable adjustments to be made in their referral letters. There is some innovative practice being undertaken with mainstream health to make sure reasonable adjustments are made for individuals, including midwifery, dentistry and optometry. There has been an increase in the number of key posts, including acute liaison nurses and health facilitators, and the development of an evaluation tool in one area, which demonstrates improved quality of service and value for money. This year s process has shown an increase in the take up of the DES with some areas achieving 90 to 100%. Most areas have plans in place to try and improve the take up with targeting of poor performers and those that are outliers, setting overall performance benchmarking to improve their contribution. The transition to CCGs is seen as an opportunity to improve the number of GPs involved in the DES. There is also a drive to improve the quality of the health checks people receive from their GP as well as increasing the take up and numbers. In one area the clinical lead for a CCG is working collaboratively across commissioning groups to develop a city-wide standard of practice. 4
Health Check Numbers Barns Bass Brad Cald Donc E Rid Hull Kirk Leeds N E Lincs N Lincs N Yorks & York Roth Sheff Wake Practice numbers GP practices signed up by Area 120 100 80 60 40 practices signed up 20 0 Areas For those areas where non attendance of people at their health checks is an issue, work is being undertaken to try and reduce the number, through a number of initiatives including health facilitators accompanying people to the health check, discussion with people and families to make sure they understand what a health check is and why it is important to attend. Most areas are in a position where they now collect data of non attendance and are taking positive action to address it. Health Check Numbers by Area 1800 1600 1400 1200 1000 800 600 Refused Health Checks Health check accepted & taken 400 200 0 Barns Bass Brad Cald Donc E Rid Hull Kirk Leeds Refused Health Checks 44 27 60 111 0 0 0 65 0 1 Health check accepted & taken 426 1517 464 589 465 192 838 779 405 240 902 612 990 720 Areas N E Lincs N Lincs N Yorks & York Roth Sheff Wake 5
Further progress has been made in developing Health Action Plans, and community teams and specialist services are to be congratulated for ensuring that people s health needs are identified and addressed. With the increasing focus on GPs as the gatekeepers of the Annual Health Check process, it is important that these Health Action Plans and the needs they highlight are closely aligned with the Annual Health Check process and linked to commissioning plans for the future. It is recommended that sustained progress on collecting key data about people s health this year continues to be seen as a priority, if areas are to effectively identify health inequality and demonstrate improved experiences and outcomes for people. Objective Two - People with complex needs Responses show that further progress has been made this year to address the needs of people with profound and complex learning disabilities. An increase in partnership working across health and social care, particularly around transition, with local data being used to develop care pathways, tracking of transition from children to adult services, some excellent and commendable practice is described in terms of timely, multidisciplinary, person-centred planning happening for young people, with the emphasis on providing local services and the development of personalised budgets. Good progress has clearly been made in those areas with prisons, with the development and validation of a screening tool, now in use in prisons. Alongside this, some areas are offering awareness training to prison staff, and one area has seconded a nurse into the mental health inreach team, which has enhanced the services in prisons. There is evidence of integrated LD offender commissioning arrangements and the mapping of current LD practise in prisons. Work has extended into probation teams to raise awareness and develop a screening tool and there are a number of court diversion posts established. In one area, there is a triage system in place at the time of arrest that assesses the need and level of Learning Disability. Work is also progressing for people with Autism; most areas now have an autism strategy in place and a board which oversees progress. Some of these boards are sub-groups of the Learning Disability Partnership Board and, although this makes sense in terms of the number of people who have dual diagnosis, the current economic climate and diminishing capacity within organisations means thought must be given to make sure the needs of people who do not have a learning disability are addressed and dealt with in a sensitive manner, as these people do not like to be associated with the Learning Disability label. Work is taking place in a number of areas to review current contracts and ways of working with providers. In one area, a quality improvement framework is being used to assure and improve quality across regulated providers, and framework contracts are being developed in partnership with providers. For the past four years, the need to improve strategic planning for people with learning disabilities who are ageing has been a locally and regionally recognised priority. There is evidence of this now beginning to happen, especially around dementia, with the development of some services specifically commissioned to address the need.. 6
The pace of change is fast and therefore it is more important than ever to make sure that people and families are included in commissioning decisions and service design. Most areas have a good record of inclusion, with information and engagement which is accessible. The challenge in the coming year will be to move towards a model of co-production within a changing landscape. Objective Three - Safeguarding, Governance, Assurance and Quality Following recent events and reports (Six Lives, Death by Indifference, 74 and Counting and the DH review post Winterbourne), Safeguarding continues to be at the forefront of people s minds and organisation s plans. Most areas responses indicate generally good partnership working in safeguarding people from abuse. There are robust reporting mechanisms in place and in some areas commissioners are required to give quarterly updates to the safeguarding and quality assurance board. More people with learning disabilities and carers are involved in Safeguarding Boards and a range of training activity. CQUINS have been effectively implemented to improve safety and quality and to monitor patient experience within some acute and specialist trusts. The Equality Delivery System (EDS) includes people with a learning disability in most NHS services and where it currently does not it is being developed to do so. Progress has been made with organisations to monitor and review the implementation of the Mental Capacity Act. This is regularly reported to commissions through audit and contract compliance and there is evidence to suggest from people and families that staff have a better understanding of the act and their responsibilities to ensure it is followed. Some providers produce information about the number of DOLs requests and those that have been put into place. Earlier in the year the PCTs undertook an enhanced quality assurance exercise immediately after the events at Winterbourne View to assure themselves, the SHA and DH that they had a clear record and knowledge of those individuals whose care is commissioned from out of the area. At the time some areas did show a good understanding of this population but the recent SAF submissions have shown a marked improvement in the data collection, with the establishment of joint teams and multi-agency complex care projects and action plans which are regularly reviewing and monitoring placements, giving quality assurance and safeguarding to individuals and their families. The emphasis is to make sure that the placement is appropriate, meets current need and there are plans in place for the future. There is evidence of good practice where people and families are being involved in the monitoring and review process, the use of person-centred plans and a named contract for each individual who is placed out of district. Many areas can demonstrate that people have had a face to face review in the last 12 months, which was person-centred, outcome-focused and some people have moved to more appropriate settings closer to home following this process. Each area has identified a lead commissioner who is the link person and will work in partnership with the placing PCT, if any areas of concern are raised within that PCT boundary and most have adopted the Out of Area placement protocol. However, some areas who have a high number of people placed in their area by external commissioners are recording corresponding additional pressures on local safeguarding arrangements. 7
There has been an increase in the involvement of people and families carers in the review and design of services. Contributing factors to this progress may be due to areas developing a wider range of communication and consultation media; creating more ways of involving and engaging with people and seeking their feedback; and, certainly, the increased interest and commitment of people with learning disabilities themselves in getting involved with issues that impact on their health and wellbeing. There is some evidence of co-production taking place, service specifications to providers include the requirement to include people and families in service design and there is an increased use of experts by experience in a variety of arenas, including workforce design and recruitment. The current position in the transition to CCG, CSS and Health and Wellbeing Boards is different in each area. Some have established new structures, whilst others are in the planning and forming stage. It is clear from the submissions that everyone understands the importance of making the appropriate links to the emerging structures and new ways of working. Some areas regularly report to Health and Wellbeing Boards and CCG where they are established, others are busy making links with local Health Watch. Evidence is emerging that most people involved in the CCG, CSS and Health and Wellbeing Boards are demonstrating a strong commitment to high quality commissioning for people with a learning disability. The challenge will be to make sure in the coming months that this commitment continues with the competing priorities CCG, CSS and Health and Wellbeing Boards will face. Work ahead in the coming year Safeguarding Safeguarding will continue to be a major area of concern, in light of recent events and the transition to the new structures and ways of working. At present in some areas it is unclear as to where this responsibility will sit and how to ensure that the progress that has been made is not lost. The DH review final report may well have an impact on aspects of commissioning and service planning and delivery in all areas in the coming year. Key themes for areas to continue to work on are the same as last year; Maintain comprehensive up to date records in each area of everyone with a learning disability who is in long term hospital care both in and out of the area Ensure people have confidence about the quality and continuing appropriateness of that care - including, centrally, facilitating greater feedback and involvement from patients and carers Robust admission and discharge practice. Having a good knowledge of all people living in the locality whose care is commissioned from outside the locality Having a comprehensive range of local specialist learning disability services which sustain people in the community and avoid unnecessary admissions to hospital in or out of area. Developing the provider market - ensuring that local private or voluntary sector staff caring for people with complex needs are well trained and supported 8
Timely, multi-disciplinary planning for young people approaching transition, who are likely to need specialist health support in future years. Challenges identified by the areas for the coming year include. - Further improve people experience and involvement in services. - Increased uptake of DES - Improve the number and quality of Health Action Plans and annual health checks. - Increase the range of accessible information for people and families. - Improve data collection, especially around screening programmes. - Offender health. - Develop joint outcomes frameworks for CCG and LA. - Outcome framework contracts, contract compliance and the inclusion of people and families. - Further developing in the wider primary care community, learning disability awareness and reasonable adjustments to practice - More work and training to ensure practice around consent is consistently good across the region - Continuing review of Out of Area placements - Development of Co-production with people and families. - Whole system review - Assurance processes with the introduction of personal health budgets. Plans for 2013/2014 At a national level there is discussion taking place about next year s process 2013, and a working party consisting of SHA and LA leads has been set up to bring together the Self Assessment framework and the Partnership Board Annual report, so that local areas only have one submission to do across health and social care. The deadline for completion is the end of 2012, so that it will be ready for people to use from March 2013. One of the major factors to consider is not to change the SAF completely, but to take the important elements and consider the feedback people have given this year and change it so that local areas are still able to plot progress from one year to the next. The same needs to be done for the Partnership Board Annual Report. Conclusion The year ahead will continue to be challenging with the continuing drive to make efficiency savings at the same time as structures and organisation change. As people move on and leave posts/ organisations there is real danger that the intelligence and experience people take with them will be lost forever. The key will be to make sure that there are robust systems in place to maintain progress that has been made and that CCG and Health and Well-being boards are well briefed with the achievements and challenges that face them in the future. All areas are to be commended for the commitment to continue to drive the agenda in face of both personal and organisational upheaval. A great deal has been maintained and enhanced 9
over this last twelve months and there is a real sense that this commitment and determination to improve service for people with a learning disability will continue. 10