Institute of Health Sciences and Public Health Research Health Facilitation and Learning Disability Ghazala Mir, Victoria Allgar, Joyce Evans, David Cottrell, Phil Heywood and Joyce Marshall

Institute of Health Sciences and Public Health Research Background to the research Policy context –Valuing People –Guidance on health facilitation and Health Action Plans –Other policies Existing evidence –Health facilitation –Identifying people with learning disabilities –Health Action Plans –Health Screening and health checks

Institute of Health Sciences and Public Health Research What is health facilitation? Support for people with learning disabilities, their relatives and support workers Help to find their way around the NHS and access good healthcare Work to develop services (level 1) Work with individuals (level 2) Department of Health 2002: ‘Action for Health’ Good Practice Guidance for Partnership Boards

Institute of Health Sciences and Public Health Research Research methods Focus on one area. Qualitative/ quantitative methods. Interviews with: 25 professionals working in specialist services, mainstream healthcare and voluntary organisations 16 people with learning disabilities 14 people acting as health facilitators 2 focus groups of family carers for –people with high support needs –people from minority ethnic communities

Institute of Health Sciences and Public Health Research Research Methods We also looked at: 16 health action plans 6 health assessments GP records for: –13 people with Health Action Plans –46 people identified on GP registers –57 people identified on GP registers and offered health facilitation Validated findings – two research workshops and Advisory Group mostly of local stakeholders

Institute of Health Sciences and Public Health Research Health facilitation policy Lead Health Facilitator Post in each PCT Create Health Action Plans Work with GP practices Mainstream Service Development Work with acute trusts Identify people with learning disabilities Training Investment Lead Health Facilitator supports others to write Health Action Plans PCTs and Partnership Boards work with each other to lead Named contact for each GP Collaborate with family carers, supporters and other professionals Health Screening Lead Health Facilitator feeds back action needed to Partnership Board Practice nurses Carry out Health assessments Identifying or creating resources for health facilitation Protocol around transition Wide range of Carers and Professionals writing Health Action Plans GPs offer health facilitation

Institute of Health Sciences and Public Health Research Level 1: The Intended Process Lead HF Post in each PCT Training and Invest- ment Supports development of Level 2 hf Mainstream Service Develop- ment Feedback to Partnership Board informs service planning Health needs identified and met

Institute of Health Sciences and Public Health Research Findings: Level 1/Strategic Health Facilitation Some positive steps: Local Delivery Plan Health Action Planning pilot GP toolkit Drama project Training for hospital staff and one Primary Care Team

Institute of Health Sciences and Public Health Research Barriers to implementation PCT/GP resistance to engagement and responsibility: To be totally frank, nobody in government in the Department of Health has asked me anything about Health Facilitators, I get asked every month about waiting lists for operations, I get asked every month about access to Primary Care to see a GP for the population as a whole etcetera, etcetera. The Department of Health make very clear in what they ask you to report about, what their priorities are… nobody’s ever asked me about people with a learning disability. PCT Executive Manager

Institute of Health Sciences and Public Health Research Community Learning Disability Team dynamics: People with learning disabilities need to opt in to mainstream healthcare arrangements and then take responsibility for those actions identified that will maintain and improve their health. Mental health website The toolkit will …provide a reference point for those individuals in your practice area who can work in partnership with you to meet the health needs of people with learning disabilities. GP Toolkit Need for more training Service development more apparent within learning disability services than in mainstream services –More Health Facilitation activity by CLDT –focus provided by research project –Draft Strategic Plan/Healthy Lives Steering Group

Institute of Health Sciences and Public Health Research Family carers : people from minority ethnic communities/people with complex needs Not involved in pilot project Strategic work needed around facilities in hospitals /staff training Process of GP communication with consultants caused delays in treatment (complex needs) Training by Community Learning Disability Team did not address concerns of these groups CLDT not equipped/confident to challenge misconceptions/stereotypes (ethnicity)

Institute of Health Sciences and Public Health Research Level 2: The Intended Process Identify people with learning disabiliti es GPs offer health facilitation Health action plans produced Health needs identified and met

Institute of Health Sciences and Public Health Research Level 2/Operational health facilitation Identification on GP registers – lack of interest by GPs/definitions/concerns about ’labelling’ Explanation/trust increased take up of HAPs Carers could refuse plans on behalf of person ‘Circles of support’/determinants of health/priorities of person or family carer not always addressed Valued by people who had them/raised awareness Took time to produce; specialist skills and third party involvement important re challenging behaviour

Institute of Health Sciences and Public Health Research Carers and Health Action Plans A2: I suppose I didn’t really feel as though I really needed it, with having him [the GP] close at hand, I didn’t feel as though we needed it really…. We’ve no problems. I don’t have, I don’t feel to have any problems, put it that way. … A: I’m moving out 40….40, mum? Q: Is that a plan? A2: So he says. Family carer and person with learning disabilities

Institute of Health Sciences and Public Health Research Level 2/Operational Health Facilitation Additional issues for complex needs and minority ethnic service users/carers: There is nothing to suggest that there is an underlying mental illness influencing [her] behaviour. She describes ongoing interpersonal issues with some other residents, which again had been picked up during the Outreach nursing assessment, but are outstanding… the input required is environmental GP records for person with challenging behaviour Poor follow-up of Health Action Plans Improved health outcomes could not be shown statistically because of small numbers - trends show more medication reviews and health checks involving attention to lifestyle issues eg smoking, weight, alcohol, BP

Institute of Health Sciences and Public Health Research Conclusions: Level 1 Health Facilitation Vision without adequate resources applies to a number of policies – political purpose Need to tie this work in with other policies that are more closely monitored to improve engagement of mainstream services Need to increase capacity within PCTs – eg through Strategic Health Facilitator post Involvement of all stakeholders via the Partnership Board More information/training/collaboration/targeting excluded groups/work with GPs needed More incentives needed to balance disincentives that currently exist

Institute of Health Sciences and Public Health Research Conclusions: Level 2 health facilitation Need to include more elements of guidance in Health Action Plans eg determinants of health: social relationships/daily activity Collaboration between voluntary and statutory services could help close circle of support Need to target work with minority ethnic communities/family carers/people with complex needs Need to make Health Action Plans more widely available

Institute of Health Sciences and Public Health Research Recommendations: PCT/acute sector Appoint Strategic Health Facilitator Promote legal duties under DDA and RR(A)A 2006 Inclusive approach to NSF and other priority targets Invest in training for professionals/health facilitators Named hospital Learning Disability leads to work with the Strategic HF Aggregate evidence of need from Health Action Plans to inform the development of local services

Institute of Health Sciences and Public Health Research Recommendations to Partnership Board A Health Task Group and action plan with targets/ timescales and links to the PB commissioning plan. Strong links with CLDTs and oversight of their work GPs aware of resources and support available Local protocols for information-sharing Targeted inclusion of minority ethnic groups, people with complex needs and family carers Monitor needs identified by HAPs and use in planning Systems for regular review of Health Action Plans

Institute of Health Sciences and Public Health Research Recommendations to Learning Disability Services Review skills and knowledge within teams Provide training to health facilitators and staff carrying out other forms of assessments Ensure that training covers inclusion A named individual for each area of the city and collaboration to identify/offer health facilitation Promote tools and best practice HAPs focus on priorities of people with learning disabilities and their family carers and support provided to implement Plans Collaborate with voluntary sector organisations

Institute of Health Sciences and Public Health Research Recommendations to Strategic Health Authority Review and improve professional development courses - Make these available to primary care staff Opportunities for interprofessional learning around elements of learning disability curriculum Take a lead role in stimulating and monitoring activity by the PCT and acute care

Institute of Health Sciences and Public Health Research Department of Health/Office for Disability Issues Produce joined-up policies Monitor and report progress on Valuing People health targets Review current mechanisms to monitor policy implementation Work with professional bodies to extend learning disability components of professional education courses