General Practice – Learning Disability Education Day

1. General Practice – Learning Disability Education Day Dr Meena Anand, GP Principal, Brookfield Park Surgery Clinical Lead – Learning Disabilities Camden CCG 17/05/2017

2. People with learning difficulties are at significantly higher risk of early, preventable death than other groups. Some of the reasons relate to higher levels of deprivation and social exclusion, and some lifestyle factors, such as being overweight or obese. • However, access to health services also plays an important part. Therefore continuing action to improve the health and access to health services for people with learning disabilities is an important priority in Camden. • December 2016: Report published by NHS Digital, in collaboration with Public Health England, highlighted differences in the health outcomes of people with learning disabilities, which included: • Females with a learning disability had an 18-year lower life expectancy than the general population, while males with a learning disability had a 14 year lower life expectancy than the general population. • People with learning disabilities were 26 times more likely to have epilepsy, 8 times more likely to have severe mental illness and 5 times more likely to have dementia. They were also 3 times more likely to suffer with hypothyroidism and almost twice as likely to suffer diabetes, heart failure, chronic kidney disease or stroke. • 1 in 2 eligible women with a learning disability received breast cancer screening compared to 2 in 3 eligible women without a learning disability Setting the Scene

3. Setting the Scene - Camden

4. The number of people recorded on GP Learning Disability registers has increased in Camden since 2006/07, as it has done in London and England (likely due to incentive schemes – QoF Learning disabilities register / Direct Enhanced Service). The prevalence in Camden is lower than the London and England averages, which at least in part, is likely to be related to high levels of mobility in and out of the borough among younger and middle aged adults. 53% of patients with LD had health checks in Camden (National target – 79%) UPDATED: Jan 2017 54.9% had LD health checks(England average 37.1%), top 10 performing CCGs for this indicator. A learning disability (LD) diagnosis was recorded for 544 people (all ages) registered with a GP in Camden, of which 477 were adults (aged 18+) according to the Camden GP dataset as of September 2012. In Camden 97.1% of those patients on the GP Learning Disabilities registers receive care for a long term conditions (London Region 86.6%, England 83.9%) What are we doing well and what can be improved? Setting the Scene - Camden

5. Accessible Information Standard Overview Emdad Haque (Equality & Diversity Manager, NELCSU) Accessible Information Standard: a solution for providing information in Easy Read Richard Lohan (Accessible Information Officer, London Borough of Camden) Role Play – What’s good and what could improve about healthcare in primary care Surge (advocacy group supporting people with mild to moderate learning disabilities) A carers experience of general practice Allegra Lynch (Chief Executive Officer, Camden Carers Centre) & Diane Pearson (Carer) Overview

6. Lessons learnt from Royal Free NHS Foundation Trust (RFH) & University College London Hospitals NHS Foundation Trust (UCLH) Tim Buck, Clinical Nurse Specialist (Learning Disabilities), UCLH NHS & Sarah Lally, Acute Liaison Nurse (Learning Disabilities), RFH Reflections upon the day Dr Meena Anand Overview

7. Emdad

8. Accessible Information Standard Emdad Haque NEL CSU emdad.haque@nhs.net 17 May 2017

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12. The AIS applies to – and therefore must be implemented and adhered to by NHS Trusts, GP practices, private providers, voluntary sector organisations and public health. This is set out in section 250 of the Health and Social Care Act. 12

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16. From 1st August 2016 onwards, all organisations that provide NHS care or adult social care are legally required to follow the Accessible Information Standard. 16

17. Which patients are affected The Standard applies to patients and service users who have information or communication needs relating to a disability, impairment or sensory loss. It also applies to parents and carers of patients or service users who have such information or communication needs, where appropriate. Individuals most likely to be affected by the Standard include people who are blind or d/Deaf, who have some hearing or visual loss, people who are deafblind and people with a learning disability. However, this list is not exhaustive.

18. How we should implement it for existing patients Providers are not required to retrospectively trawl records to identify patients who may have information and communication needs. Identification of patients with needs (and recording of how those needs should be met) must take place as patients register or first interact with services and for current patients opportunistically as they contact the service. For example, a question should be added to new patient registration forms and existing patients should be asked about their needs next time their details are reviewed.

19. What should GP practices do • Establish local process/protocol for meeting the five key steps for GP practices • How to identify people with additional communication needs • How to record details on people’s files • How to flag needs at the point of patient contact • When and how to share people’s needs • How to meet people’s needs

20. Like to know more https://www.england.nhs.uk/ourwork/accessibleinfo https://www.bma.org.uk/advice/employment/gp-practices/service-provision/accessible-information-standard

21. Richard

22. Richard Lohan | CLDS Camden learning disabilities service Easier to understand accessible communication | accessible information

24. What is the reasonable adjustment for people with learning disabilities?

25. more time

26. annual health checks health action plans

27. speak slowly no jargon no difficult words one idea at a time repeat if necessary check understanding communication

28. patient registration appointment letters appointment cards health check info use of photos website easy read information

34. reception signage leaflets screens alerts environment

35. photosymbols.com drjargon.com easyhealth.org.uk rixwiki.org richard.lohan@camden.gov.uk | CLDS | 020 7974 2563

36. SURGE

37. We are the SURGE Reps Speaking Up Rights Group Experts We all have learning Disabilities.

38. We speak up to Doctors, GP’s and the Council in Camden to name a few. We tell them what is important for people with Learning Disabilities when you Support Us.

39. We also do Training and Easy Read. You can email us at surge@advocacyproject.org.uk or Ring our supporter Brendan on 079 39 53 38 63

40. Camden Carers Service

41. Tim & Sally

42. Learning Disability Specialist Nurses - Acute Wednesday 17th May 2017 Tim Buck - UCLH Sarah Lally - RFH

43. What do we do? • Support patients, families & carers • Support teams & promote joined-up working • Act as a link to services & information • Help plan admissions • Help with discharge planning • Liaison with Community Teams • Advise on mental capacity assessments/best interest conversations. • Training staff

44. Support tools • Hospital Passport • Easy-Read Information • Easy-Read Discharge Information • Health advocacy services • Patient films

45. Patient films • https://www.youtube.com/watch?v=ZtkRGbEPO8c&list=PLazCbfp_tqxyX0iT7NfLdcyfDCQ0N2gfz#action=share

46. Working together with GPs • ‘Learning Disability’ to be clearly marked on referral form- not learning difficulties. • Promote the hospital passport with patients if you know of upcoming admission. • Let patients/carers know they can contact us if worried about admission. • Sharing information – GP LD registers?

47. How can we help you?

48. Hampstead Group Practice – Approach Appoint designated lead for LD Easy read website Easy read cards attached to all registration forms Easy read annual health check invitation letter Simplify waiting room screens Resources on the intranet for GPs - i.e. LD easy read leaflets 7. Raising awareness of useful instructional videos for LD patients 8. Staff education - In house teaching session to be arranged with LD representatives - Ensure front line staff have a good level of LD awareness Reflections upon the day

49. The patients perspective The carers perspective Facts and Statistics Accessible Information Standard Lessons learnt from local acute providers What were doing well and what we can do better Reflections upon the day