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Promoting Access To Mainstream Psychological Services For All: Including people with mild to moderate learning disabilities Christine Burke Jill Davies About FPLD Our vision is that people with learning disabilities continue to get better lives and that our work contributes to this through the development of knowledge, the improvement of practice and the influence of policy About FPLD – how we do it www.learningdisabilities.org.uk “An estimated 25-40% of people with learning disabilities have mental health problems… Commissioners and service providers will need to continue to ensure that mental health services are accessible to all disabled people…. The improvement of mental health services for people with learning disabilities [requires] inclusivity of mainstream mental health services for people with learning disabilities who have mental health problems”. No health without mental health, Department of Health (2011) “The IAPT programme will consider that equitable access has been achieve when the proportion of patients using IAPT services is in line with both prevalence and the community profile” (IAPT three-year report. DH 2012) Prevalence of mental health problems in people with learning disabilities People with learning disabilities are more likely to develop mental health problems as compared to the general population. 1 in 4 people experience a mental health problem at some point in their life (Singleton et al, 2001) Estimates range from 20 – 40% for people with a learning disability Prevalence 3% for schizophrenia (three times greater than for the general population), with higher rates for people of South Asian origin (Public Health Observatory for Learning Disability) Risk Factors for Mental Health Problems for people with learning disabilities • more likely to: – live in poverty, – have few friends – to have other long term health problems and disabilities such as epilepsy and sensory impairments. (Emerson and Hatton, 2007) – have fewer psychological and material resources to deal with adversity (Jahoda et al, 2006) – experience social exclusion, poverty and abuse (Gravell, 2012). Risk Factors for Mental Health Problems for people with learning disabilities − risk-averse service cultures contribute to restrictive environments with fewer opportunities to build selfefficacy and develop problem-solving skills (Dagnan & Jahoda, 2006) − encountered discrimination by not being given opportunities to get a job, socialise, have relationships developing low expectations. (FPLD, ‘Count us in’, 2002) • lack of meaningful activity can increase vulnerability for mental health difficulties such as depression (Stancliffe et al, 2011). • People with learning disabilities have increased health needs compared to the wider population. Physical and mental health has a direct impact on one another. (Hardy, 2011) • Communication and language – it can be difficult to communicate or articulate the symptoms of mental health. (The Count us in inquiry, FPLD, 2002) Barriers early identification and diagnosis • Diagnostic overshadowing. ‘Its because of your learning disability’ • Lack of knowledge by parents and professionals about the range of mental health problems people experience, and about who to go to for advice. • Not being listened to. • Referrals passed from service to service, particularly if the person had mild/moderate level needs. Range of mental health problems • • • • • • • • Anxiety Obsessive-compulsive Depression/bi-polar disorders Schizophrenia Eating and elimination disorders Sleep disorders Attachment disorders Personality disorders The Access to Mainstream Psychological Therapies Project • Funded by DoH and run by the Foundation for People with Learning Disabilities in partnership with Kings College. • Raise awareness about barriers to IAPT services. • Provide evidence to make recommendations about effective strategies for service development. • Explore ways in which Improving Access to Psychological Therapies (IAPT) services can better support people with learning disabilities and mental health needs. What we hope to achieve • IAPT staff have increased confidence and knowledge around the needs of people with learning disabilities and social communication disorders. • Development of clear pathways to access services for all. • People with learning disabilities and social communication disorders successfully accessing IAPT services. • Joint working between IAPT and health and social care through involvement in the learning sets. Insights from mapping X Borough Y Borough Good links between psychologists in different specialties No forum for meetings between psychologists between different specialties Opportunities for consultation and training Referral pathways between CLDT and IAPT Joint working Both offering variety of therapies IAPT services provided by a different trust to LD psychology Different service lines based on “payment by results” “We don’t work with people with learning disabilities” What we found • • • • • • • • Out of 25 respondents 4 were from IAPT 7 areas confirmed Rest no engagement – not priority/IQ No way of recording learning disability in national data base and no indication of priority. No commitment from IAPT in North England for ALS Workshops and development of IAPT champions developed Training on working with people with learning disabilities Follow up with local support to encourage joint work IAPT/LDT Project outcomes to date • Joint working between IAPT/LDT • Reference/implementation groups set up in some areas successfully this has resulted in the involvement of commissioners and local plans. • Clearer statements of inclusion in IAPT services for people with learning disabilities. • Recording systems that allow for monitoring of people with learning disabilities’ access to IAPT. (As in the Cumbria model) • Training for PWPs and other IAPT therapists from LDT • Pathways for joint working between IAPT services and local specialist learning disability services. Project results • Clear goals and targets regarding use of IAPT by people with learning disabilities specified by commissioners and funded appropriately • Different models of delivering good psychological therapies for people with learning disabilities developed • Joint development of Good Practice Guide for IAPT • Training modules developed • Work with National IAPT for change in data sets • Dissemination of positive practice, conference, articles etc. IAPT & Learning Disability Research • This study, funded by BUPA, explored the relationships between the Improving Access to Psychological Therapies (IAPT) programme in England and people with learning disabilities and the people and services that support these service users. (Dr Deborah Chinn et al 2014) It sets out to answer the following questions: • What are the barriers and facilitators facing people with learning disabilities in accessing IAPT? • How do these relate to the views, practices and service delivery models described by IAPT and specialist learning disability staff in England? • What are the strategies and practices that staff employ to support people with learning disabilities to make good use of IAPT services? • What advances are needed at the level of individual staff capabilities, service delivery models, management, commissioning and policy development to ensure equitable access to IAPT for people with learning disabilities? Results • Staff in IAPT services do come across people with learning disabilities as clients. • The IAPT programme as a whole has not adequately addressed access issues for people with learning disabilities • Some IAPT services exclude people with learning disabilities from the outset, by specifying eligibility criteria that rule them out. Results • a number of IAPT staff feel that their service, as a mainstream, community-based service for people experiencing common mental health problems, should be available to people with learning disabilities and can offer treatments that they will find helpful. • The Psychological Wellbeing Practitioners (PWPs) seem most optimistic about people with learning disabilities making good use of IAPT. ( PWPs provide shorter, more practical interventions focusing on self-management and education about mental health.) Learning disability staff Some specialist learning disability staff : • Are actively involved in promoting IAPT for people with learning disabilities. • have either limited knowledge of IAPT services have had negative experiences in trying to support their service users to get treatment from IAPT. • Felt that Iapt staff lacked confidence and understanding of the needs of people with learning disabilities. • Felt that specialist input from learning disability staff is more helpful and appropriate, particularly for people with more complex . presentations Figure 2. To your knowledge does your local IAPT service work with people who need help with the following conditions? Results From the perspective of IAPT staff: majority of people with learning disabilities they saw had been referred by GP (58.3% N137), 14% self referring, but only 8.1% CTLD. In your opinion should ALL psychological therapies for people with learning disabilities be provided by specialist learning disability services? consensus among the IAPT staff and the learning disability staff, with very similar proportions of each group (73.8% of the IAPT staff, N=138 and 73.5% of the learning disability staff, N=175) answering No to this question Both teams agreed that IAPT should be supporting people with learning disabilities with common mental health problems.(anxiety and depression) Figure 8 What do you think makes an impact on whether someone with learning disabilities would benefit from IAPT input? (IAPT staff responses) (Learning disability staff responses) The researchers found a similar response from IAPT and LD staff. With an emphasis on support from carers and the individuals capacity to understand the model of change underpinning IAPT therapies. Neither group felt that reading and writing would be a major barrier. Communication issues highlighted as a possible barrier Figure 10. To your knowledge, what has been the impact of this training? Similarly there was an increase in IAPT staff confidence in supporting people with learning disabilities What helps. IAPT services work best for people for learning disabilities when: • IAPT staff and learning disability staff have developed good working relationships and can co-ordinate their input. • have prior experience of the needs of people with learning disabilities • are adapting their materials and their work practices for this client group. • involve family and carers in their work. • their managers are happy to support them to work more flexibly and at a slower place. • access training and consultation from local learning disability specialists. What hindered Piecemeal support for work with people with learning disabilities within IAPT, and initiatives vulnerable to service cuts. This work does not appear to be a priority for commissioners, who generally do not set local goals regarding access to IAPT for people with learning disabilities. People with learning disabilities can struggle to see themselves, and be viewed by service systems, as legitimate candidates for IAPT services. What is needed Clearer statements of inclusion in IAPT services for people with learning disabilities. Recording systems that allow for monitoring of people with learning disabilities’ access to IAPT. Training for qualification of PWPs and other IAPT therapists to include material on working with people with learning disabilities, where possible delivered with the involvement of people with learning disabilities. Pathways for joint working between IAPT services and local specialist learning disability services. Clear goals and targets regarding use of IAPT by people with learning disabilities specified by commissioners and funded appropriately. Next steps for project • Update the IAPT Good Practice Guidance • Influence inclusion of ld in National data set • Develop ld champions in IAPT north of England • Evaluation report and research report Disseminate nationally • Influence policy and practice Visit www.learningdisabilities.org.uk IAPT Report King’s College, London and the Foundation have been involved in a project looking at the experiences of people with learning disabilities when using IAPT and have written a report and easy read executive summary about this. Download this report and easy read executive summary from our website. http://www.fpld.org.uk/content/assets/pdf/publications/iapt-and-learning-disabilities-report.PDF http://www.fpld.org.uk/content/assets/pdf/publications/easy-read-iapt-research-report.PDF MHLD Report and Easy Read Guide The mental health of people with learning disabilities is often overlooked and if recognised, services do not adapt to meet their needs. We did a survey of people with learning disabilities, their families and p eople who work in mental health services to see how well these services were supporting people with learning disabilities. We have produced a report, Feeling Down improving the mental health of people with learning disabilities, with recommendations about how these services can better meet people’s needs. We have also produced an easy read guide, Feeling Down: looking after my mental health, to help people with learning disabilities think about their mental health needs and support them to prepare for their visit to their doctor to talk about their feelings. http://www.fpld.org.uk/content/assets/pdf/publications/feeling -down-report-2014.pdf http://www.fpld.org.uk/content/assets/pdf/publications/feeling -down-guide.pdf Contact Christine Burke Foundation for People with Learning Disabilities Colechurch House 1 London Bridge Walk London SE1 2SX Tel: 07985417808 [email protected]