Mental Health and Learning Disability - Current ARC projects

1. Mental Health and Learning Disability - Current ARC projects David Grundy

2. About ARC (www.arcuk.org.uk) • Member led organisation (mainly voluntary orgs) • Offers members a voice and representation at a national level • News and policy updates • Various training LDQ - NVQ etc • CRB/POVA • Undertakes a wide range of projects of interest to members

3. About ARC • For example - • Handling Medication In Social Care Settings • Research project into Hospital Admission for People with a Learning Disability in Wales • Hosting National Learning Disability and Ethnicity Network (www.lden.org.uk) • Moving On Up project (www.movingonup.info) • The Candle project and the Clear Thoughts project

4. Mental Ill Health in Learning Disability • Having a Learning Disability is the single most significant factor identified in increasing the risks of mental ill health • The other common risk factors also apply to people who have a Learning Disability • Family breakdown • Social isolation • Poor communication • Little control or choice over life

5. Mental Health in Learning Disability • Young people with a learning disability have a greater chance of being exposed to negative life events • 65% of YP with LD grow up in poverty • 52% of YP with LD have a parent carer with mental ill health • 51% of YP with LD have a parent carer with no educational or vocational qualifications • 25% of YP with LD have a parent carer with physical health needs • 60% of YP with LD have been exposed to two or more of these negative life events • (Emerson & Hatton 2007)

6. Mental Health in Learning Disability • Times of change and transition can be difficult, especially for BME communities • Sometimes the mental health issues are ‘overshadowed’ • Increasing national focus on positive mental health/emotional well-being is this reflected in learning disability services? • Both Candle and Clear Thoughts look at positive mental health not just mental ill health

7. Interaction between LD & MH • Most young people with learning disabilities were not aware of the term ‘Mental Health’ • Families were suspicious of the term Mental Health and need for a separate, additional label • Most young people with learning disabilities had never heard of CAMHS • Young people with learning disabilities or the people they go to for advice are not well informed about mental health and mental health services • Some people from BME communities found situation more difficult due to ‘stigma’ from community members • FPLD (Foundation for People with Learning Disabilities) 2006

8. Interaction between LD & MH • Diagnostic Overshadowing ‘a tendency to attribute health problems to a person’s learning disability’ • (From Equal Treatment – Closing The Gapthe DRC report into health inequalities) • ‘Challenging Behaviour’ these behaviours often not seen as sign of mental ill health • Different Presentation - • Communication -

9. Problems of diagnosis • There are increased difficulties in diagnosis when someone has a learning disability. • Staff need to be aware of these issues (and make families aware of them). They can then help the professionals making a diagnosis.

10. Problems of diagnosis • Problems of psychiatric interview for people with a learning disability • Anyone communicating with someone who has a learning disability needs to consider the following factors • People can have a tendency to answer ‘Yes’ to questions • People can have a tendency to agree to with questions/statements

11. Problems of diagnosis • People can have a tendency to agree with a list of statements/questions as they struggle to remember the order of the points within a statement • People can have difficulties in reporting timescales -yesterday, last week, last year, 5 years ago etc • People can give an impression of understanding (they understand the word but not its meaning, importantly some words can have a range of different meetings in different contexts)

12. Related Issues • Autism • Sensory Impairment • Cultural Issues • Medication

13. Cultural Issues • 2001 census information - the mixed race group had the youngest age structure - half (50 per cent) were under the age of 16. The Bangladeshi, Other Black and Pakistani groups also had young age structures: 38 per cent of both the Bangladeshi and Other Black groups were aged under 16, and 35 per cent of Pakistanis also fell into this age group. This was almost double the proportion of the White British group where one in five (20 per cent) were under the age of 16.www.statistics.gov.uk

14. Cultural Issues • Cultural behaviours that may not be mental health ‘issues’ - withdrawn teenagers, dominoes • Many people from BME communities have had negative experiences when accessing (all) healthcare services • Families worry about responses and attitudes of others both within and outside their community • Cultural differences in perceptions of health and illness - Western Medical Model may differ from cultural ‘norm’

15. Autism • Autism is not a learning disability • Too often ‘mixed in’ in CAMHS • However - better than not dealt with at all! • YP can have LD, Autism and mental ill health • Similar but different skills and abilities required to work with Autistic YP • Sensory impairment (or over-stimulation) essential aspect of Autism - no eye contact as YP may not able to use hearing and vision senses together without over-stimulation

16. Sensory Issues • People with a learning disability are more likely to have problems with their hearing and vision than the general population. • Core basic physical ill health often also present • All these needs should be checked. Might want to be something services suggest happens during any waiting for an appointment. • Poor hearing - Missing verbal messages, no-one picking up signs = possible challenging behaviour = referral • Poor sight - Missing visual messages, no-one picking up signs = possible challenging behaviour = referral

17. Medication • People with a learning disability are over-prescribed medication (as a rule of thumb) • Norah Fry Centre project gives some evidence • Talking therapies need to be available to all • Any medication must be explained by prescriber in a manner which can be understood by patient • Implications of the Mental Capacity Act

18. Valuing People - Government White Paper focused on Learning Disability - 2001 6.23 Most psychiatric disorders are more common amongst people with learning disabilities than in the general population. As for their other health needs, peoplewith learning disabilities should be enabled to access general psychiatric services whenever possible. This will require mainstream mental health services to become more responsive, and specialist learning disability services to provide facilitation and support. Legislation and Best Practice • Disability Discrimination Act • Disability Equality Duty • Disability Rights Commission (now Equality and Equal Rights Commission) • Mencap ‘Death by Indifference’ and Independent Inquiry undertaken by Governement. • Mental Health Act • Mental Capacity Act • CAMHS Evidence Based Practice Unit - Anna Freud Centre • Need I go on!

19. ARC Resources • Candle • Clear Thoughts • Moving On Up • (www.movingonup.info) • Services For All • LDEN • (www.lden.org.uk)

20. ARC Mental Health in Learning Disability Projects • ARC currently undertaking 2 projects regarding mental health (both DoH funded) • Clear Thoughts - a knowledge centre for individuals, their families and frontline staff • The Candle Project - CAMHS and New Directions in Learning Disability and Ethnicity

21. Mental Health in Learning Disability Projects • Clear Thoughts - a knowledge centre for individuals, their families and frontline staff. Website looks at positive mental health and mental illness • A mainly web-based resource offering information and links to other sources of advice and support • Aims to be clear, accessible and easy to navigate around • Will offer ‘passive’ and ‘active’ resources • Involvement of a range of other organisations and professionals • 18 months into a 3 year project - time for amendment and improvements

22. Mental Health in Learning Disability Projects • The Candle Project - guidance and resources for ‘Tier 1’ (frontline) staff working with children and young people who have a learning disability and mental health issues • Large resource covering the key areas of Mental Health, Learning Disability, Ethnicity and Transition • Will be of use in a range of settings and services • Focus on practical steps people can take • Makes the links between an • Individual’s development • Their culture • Their lifestyle • Their environment • and their mental health

23. The Candle Resource • The resource is easy to use and offers guidance that can be used in a number of ways, these include – • A ‘pick up and read’ resource for teams and individuals facing general or specific problems. • A tool for discussion within team meetings or with other professionals. • For individual personal development and training. • Developing a training programme for staff. • A signpost to other resources and material that will assist staff. • A signpost to other organisations and government departments involved in CAMHS provision

24. TheCandleResource • Additional sources of advice and support are highlighted throughout the resource and these can help with specific problems • Individuals or organisations can freely photocopy the handouts, case studies and tips • These can be used to help think through the key issues individually or as a team during team meetings, away days or informally

25. The Candle Resource • The development of the resource has involved professionals from all aspects of care and support for young people and their families • It encompasses a range of research projects involving families and young people themselves • It highlights and encourages good practice throughout • It aims to equip people who would not consider themselves to be experts to identify early warning signs of mental health issues and how to intervene appropriately

26. The Candle Resource • Candle is a resource not a full training package • There is no need to ‘complete’ it • As much as I’d love you to use all of it - it can be broken down into much smaller section • Some of the sections will be more useful to different areas of work than others • Pick and Mix to fit your needs

27. Mental Health in Learning Disability Projects • The Candle Project - is a FREE resource! • It is free to download from the Clear Thoughts website • www.clearthoughts.info • Or available in hard copy - £25.00 for B&W or on CD £5.00

28. Mental Health in Learning Disability Projects • Separate page on the site for the Candle Project resource from which files can be downloaded - link on the homepage • www.clearthoughts.info • Hopefully you will find both of them useful

29. A final plea! • Everyone is different - we are made up of a range of influences, abilities and background • Without considering the whole person diagnosis, treatment and recovery will be much harder • Professionals must get out of their boxes • Ensure respect and value differences • Treating people as individuals not conditions or cultures • Finally a personal plea for the removal of separate ‘cultural awareness’ ‘learning disability’ and ‘mental health’ training days • We must be holistic

30. Thank you • Any questions? • david.grundy@arcuk.org.uk