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

2. Aims of the feasibility study (1)Could a national clinical generate reliable data about the quality of care provided by healthcare organisations to people with learning disabilities? (2)Is a national clinical audit an effective way of driving improvement within NHS organisations? (1)Could a national clinical generate reliable data about the quality of care provided by healthcare organisations to people with learning disabilities? (2)Is a national clinical audit an effective way of driving improvement within NHS organisations?

3. Aims of the feasibility study NALD commences May 2013 Produce standards and audit tools May 2013 – July 2013 Recruit health services and collect data for audit Aug 2013 – Nov 2013 Data analysis and report results to services Dec 2013 – Jan 2014 Collecting feed back from stakeholders Feb 2014 – April 2014 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 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 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:  Continued on from discussions with Advisory Group and carried out literature review  21 standards developed for both acute and mental health services: -Reasonable adjustments-Psychotropic medication -Physical health and recording of information-Discharge planning -Capacity and decision making-Staff training -Managing challenging behaviour

7. Secondary care audit tools  Organisational checklist  Case note audit  Distributing staff, patient and carer questionnaires  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  Feedback survey  Observation surveys  Distributing patient questionnaires Community learning disability teams

9. Participation in the audit Acute hospitals Mental health services London62 Nottinghamshire01 Lancashire11 South Wales23 Community learning disability teams were recruited in every region

10. Data collection Acute hospitals (N = 9) Mental health services (N = 7) Organisational checklist 97 Case note audit 10967 Staff questionnaires 440174 Patient questionnaires 4314 Carer questionnaires 6420

11. Primary care audit findings Main findings from primary care audit Patients who had an annual health check in preceding 12 months52% Patients with an annual health check who had details of a Health Action Plan included 17% Patients who had an annual health check in the preceding 12 months and also had: An assessment of vision An assessment of swallowing An assessment of hearing 8% 10% 45% Woman aged 25-64 who had a cervical screening test in the preceding 5 years24% Woman aged 50-70 who had a breast cancer screening test in the last 3 years36%

12. Secondary care audit findings Main findings from secondary care auditAcuteMental health System identifying people with LD (organisational checklist)6/92/6 Record in notes of a health passport being used (case note audit)32%12% Record in notes of BMI/weight (case note audit)70%68% Learning disability training provided on induction (organisational checklist) 1/90/6 Staff reporting to have not received learning disability training (staff questionnaires) 52%55%

13. Secondary care audit findings (continued) Main findings from secondary care auditAcuteMental health Employing an LD liaison nurse (organisational checklist)5/93/6 − LD liaison nurse available in the evening0/50/3 Record in notes that drug treatment used for challenging behaviour (case note audit) 62%97% Record in notes of physical restraint used for challenging behaviour (case note audit) 14%47% Record that de-escalation techniques used before drugs or physical restraint (case note audit) 79%74% Record in notes that psychotropic medication prescription was reviewed on discharge (case note audit) 44%71%

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

15. Feedback from pilot sites Local reportsGeneral Feedback What information was most and least useful? Challenges Identifying patients Talking points Staff training - priority area Benchmarking performance Using report as evidence Learning process Support for a future audit Any important information missing ? Does the information allow you to identify areas of practice that need to be improved? Who have/will you share the information from the audit with? Would you be willing to participate in a future national audit of this kind?

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) 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. 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 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