National Audit of Learning Disabilities: Feasibility Study (NALD - FS)

1. National Audit of Learning Disabilities: Feasibility Study(NALD - FS) Aarti Gandesha, Programme Manager & Pamela Gallagher, Project Worker Royal College of Psychiatrists

2. Aims of the feasibility study • Could a national clinical generate reliable data about the quality of care provided by healthcare organisations to people with learning disabilities? • Is a national clinical audit an effective way of driving improvement within NHS organisations?

3. Aims of the feasibility study Final report submitted to HQIP – includes recommendations for a future audit April 2014

4. Primary care audit criteria • 28 criteria developed through a consensus technique • Themes: - Learning disability and recording of information - Physical health and recording of information - Psychotropic medication - Mental health and recording of information

5. Primary care methods • MIQUEST queries to access the primary care data. • A third party organisation, PRIMIS, was brought in to write the MIQUEST queries and extract the data. • Only data that could be extracted from record systems were considered for this feasibility study

6. Secondary care audit standards • Continued on from discussions with Advisory Group and carried out literature review • 21 standards developed for both acute and mental health services:

7. Secondary care audit tools • Organisational checklist • Case note audit • Distributing staff, patient and carer questionnaires Same audit tools for acute and mental health services

8. Secondary care audit tools • Feedback survey • Observation surveys • Distributing patient questionnaires Community learning disability teams

9. Participation in the audit Community learning disability teams were recruited in every region

10. Data collection

11. Primary care audit findings

12. Secondary care audit findings

13. Secondary care audit findings (continued)

14. National Clinical Director of Learning Disabilities Pilot sites The Care Quality Commission People with learning disabilities Commissioners Collecting feedback from stakeholders Carers of people with learning disabilities Welsh Government • Links through Advisory Group: • Royal College of Nursing • Royal College of Physicians • Royal College of General Practitioners • The Confidential Inquiry Team • Mencap • Royal College of Psychiatrists’ Faculties: • Faculty of adult psychiatry • Faculty of learning disabilities • Faculty of liaison psychiatry

15. Feedback from pilot sites

16. Feedback from people with Learning disabilities – Have your Say & Self Advocates Workshop Themes : Hospital information, staff training, GPs & annual health checks. • “They use too much jargon they just talk to each other.” • “Staff should have training in learning disabilities – it is not right that they don’t know things they should.” • People with carers get reminders [to go to annual health checks], not fair to people with no carer.” • Talking points: • Experiences of being ignored and patronised • Having to rely heavily on carers (jargon, health passports) • Upset at the lack of staff training, self advocates discussed staff attitudes towards the training • Difficulties with GP (jargon,1 topic per appointment and waiting times)

17. Feedback from carers – London based focus group Themes: Communication, staff training, carer’s involvement • “Why do we have to be the parent, the nurse, the physiotherapist, the doctor? Why can’t we just enjoy our children? Why do we have to take on these roles? Why aren’t people performing? Why do you have to fight for everything?” • “My GP’s petrified if I take my child there to be quite honest. She doesn’t give her antibiotics, she doesn’t give her anything that she needs, all she says is, take her to the hospital…I shouldn’t have to take her 30 miles when my GP’s less than a mile away.” • Talking points: • Carers not taken seriously – wasted resources and time • Staff’s expectations of carers duties when child is in hospital • Suspect health professionals fear their children • Fear of what will happen when they die/if they become ill • Support a national audit but advised to ask more evidence based questions

18. The final report • Submitted to HQIP at the end of April 2014. • Based on the findings of the audit and the feedback we collected from stakeholders, we made recommendations of what a future audit could look like: What information we should be focusing on, what services should take part, how data should be collected. • Not publically available yet – still waiting for go ahead from HQIP. • As yet, no decision made by NHS England about how to proceed.

19. Contact us…… Aarti Gandesha, Programme Manager agandesha@rcpsych.ac.uk 0203 701 2697 Pamela Gallagher, Project Worker pgallagher@rcpsych.ac.uk 0203 701 2698 www.rcpsych.ac.uk/nald