1. Mental Health and People with Learning Disabilities Dr Karen Dodd Co-Director for Services for People with Learning Disabilities / Consultant Clinical Psychologist 13 th June 2016

2. What is a learning disability? In general, a learning disability (sometimes called Intellectual Disability) is a condition that affects learning and intelligence across all areas of life a learning difficulty is a condition that makes specific areas of learning difficult, but does not affect the overall intelligence of an individual e.g. dyslexia

3. Prevalence of mental health problems 1 in 4 people in mainstream experience a mental health problem at some point in their life (Singleton et al, 2001) People with learning disabilities demonstrate the complete spectrum of mental health problems, with higher prevalence than found in those without learning disabilities Estimated to be between 30 - 50% for People with Learning Disabilities

4. Joint Commissioning guide for MH in LD The prevalence of mental health problems in people with learning disabilities is considerably higher than the general population In addition to mental illness, people with learning disabilities often have coexisting autistic spectrum disorders, behaviours that challenge services, offending behaviour, or physical health conditions. It is often hard to distinguish between these conditions especially when people have more severe intellectual impairments.

5. What is a mental health service for PLD A mental health service for people with learning disabilities provides specialist and personalised assessment, and care, treatment and support. The aim is to both: (a) minimise the impact of mental illness and behavioural problems in order to (b) achieve an individual’s maximum potential and a life that that is fulfilling and integrated with the rest of society.

6. What are the mental health needs of people with learning disabilities? People with learning disabilities who have mental health needs, experience a wide range of problems and therefore require a wide range of services. They can have the full range of mental illnesses seen in the general population such as schizophrenia, bipolar disorder, depression, anxiety disorders, specific phobias, agoraphobia, obsessive compulsive disorder and dementia

7. What about challenging behaviour? A significant number of people with learning disabilities display behaviour problems that are described as challenging. These include aggressive behaviour directed towards others, self-injurious behaviour, and a range of socially unacceptable behaviours. Some of these behaviours may be sufficiently severe to lead to contact with the criminal justice system. Behaviour described as challenging should not be confused with mental health problems, although people may have both. There is also a high prevalence of autism spectrum disorders in people with learning disabilities who have mental health and behavioural problems.

8. Estimated prevalence rates in PLD Schizophrenia 3% Bipolar affective disorder 1.5% Depression 4% Generalised anxiety disorder 6% Specific phobia 6% Agoraphobia 1.5% Obsessive–compulsive disorder 2.5% Dementia at age 65 years and over 20% Autism 7% Severe problem behaviour 10–15%

9. Risk factors for developing mental health issues in people with learning disabilities People with learning disabilities are more likely to: –experience social exclusion, poverty and abuse –have few friends –have other long term health problems and disabilities such as epilepsy and sensory impairments. –be in risk-averse service cultures which contribute to restrictive environments with fewer opportunities to build self- efficacy and develop problem-solving skills –have fewer psychological and material resources to deal with adversity –have issues in communicating or articulating the symptoms of mental health.

10. Barriers to early identification of issues Getting problems recognised (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 Terminology and labelling Some people from BME communities found situation more difficult due to ‘stigma’ from community members Not being listened to Referrals passed from service to service, particularly if the person had mild/moderate level needs Lack of accessible information

11. What help is on offer in Surrey? People with LD should receive services from mainstream services with reasonable adjustments wherever possible First point of contact should be primary care – annual health checks should include checking re mental health and psychological issues Improving Access to Psychological Therapies (IAPT) should offer assessment and treatment for mild/ moderate anxiety and depression SABP IAPT and LD services are working together to ensure that people with mild LD can access mainstream / joint services to receive talking therapy for anxiety and depression.

12. What have we jointly achieved? The referral form for GPs to refer people has been amended to flag that a person has learning disabilities or learning difficulties Flagging system for people with learning disabilities on IAPTUS Introduction of Cumbria screening tool to identify people with learning disabilities and learning difficulties. Flow chart for IAPT agreed and in place. Easy Read Appointment letters Direct referral pilot started in Mid Surrey Prompt sheet developed to help IAPT workers complete GAD 7 and PHQ9 with people with learning disabilities

13. Text reminders sent to people with LD Easy Read Material for IAPT workers different types of therapy, Common Mental Health problems and for complaints. Amended CBT manual for IAPT workers Training for all 24 IAPT workers – this was videoed and evaluated. Video used for new starters in IAPT in Surrey and Barnet Joint groups being held. Support for individual work from CTPLD

14. What else is on offer? CTPLD offers a range of assessments, formulation and therapeutic interventions including: Mindfulness & LD Cognitive Behavioural Therapy Adapted DBT Group Specialist therapies e.g. Cognitive Analytical Therapy; Interpersonal therapy Family Therapy and Systemic approaches Non - talking therapies (Art Music Drama) Psychoeducational groups Medication

15. Support in crisis CTPLD Mainstream Home treatment team / Liaison Psychiatry services in A&E Admission to inpatient unit – either mainstream / LD Specific What next: Implementing an Intensive Support Service to support people within their own homes where possible.

16. What can support providers do? Recognise that people with LD can have emotional issues and will experience: Reasonable anxiety Reasonable sadness Reasonable anger Ask for further support when anxiety, sadness or anger goes beyond what is reasonable.

17. Leaflets Leaflets to assist staff and family carers to understand the issues Within each set, there is a main leaflet that looks at how we experience anxiety, sadness or anger in our everyday lives. It then looks at the issues for people with learning disabilities, making the point that we all experience reasonable anxiety, sadness and anger. This is followed by a range of leaflets describing specific issues where people with learning disabilities might experience reasonable anxiety, sadness and anger. We recommend that staff always have the main leaflet in each section together with the relevant specific leaflet.

18. Reasonable Anxiety Reasonable Anxiety and autistic spectrum disorders Reasonable Anxiety and behaviours that challenge Reasonable Anxiety and change Reasonable Anxiety and death Reasonable Anxiety and dementia Reasonable Anxiety and physical health

19. Reasonable Sadness Reasonable Sadness and control over your life Reasonable Sadness and feelings associated with having a learning disability Reasonable Sadness and health and wellbeing Reasonable Sadness and loss and change

20. Reasonable anger Reasonable Anger Reasonable Anger and being in control Reasonable Anger and communication Reasonable Anger and dementia Reasonable Anger and stigma

21. Feeling Down – Looking after my Mental Health http://www.learningdisabilities.org.uk/publicati ons/feeling-down-looking-after-my-mental- health/

22. Questions and Discussion?

23. Contact details Dr. Karen Dodd Surrey & Borders Partnership NHS Foundation Trust, Ramsay House, West Park, Epsom, Surrey KT19 8PB  DrKaren.dodd@sabp.nhs.uk  01372 205767