LeDeR Activities in Coventry and Warwickshire Q2 2024

Learning from the Lives and Deaths of People with a Learning Disability and Autistic People(LeDeR) Quarter 2 Report - 1stJuly 2024 30th September 2024

Purpose This report provides an overview of LeDeR activity in Coventry and Warwickshire during Quarter 2, 1st July 2024 -30thSeptember 2024, where Q2 is utilised hereafter, it is with reference to this period. It includes a summary of notifications to LeDeR, LeDeR reviews completed, and an update on progress made in relation to learning identified. Context Learning from the Lives and Deaths of people with a learning disability and autistic people (LeDeR) has been established since 2017 and is a national service improvement programme overseen by NHSE. Responsibility to deliver a LeDeR programme is devolved to local Integrated Care Systems (ICSs). In Coventry and Warwickshire, the programme is delivered with collaboration between partners across health, care services, public health and the community and voluntary sector. From 1st January 2022 the LeDeR programme was extended to also include the review of Autistic adults who have died from this date onwards. 2

Local Priorities Through our 2023/24 annual report we recognised the key themes that were being highlighted by our reviews. No area is more deserving of time than another however we were also realistic in the limitation of the subgroup and need for prioritisation of resources. We will continue to conduct focused reviews where the death was attributed or due to pneumonia or constipation along with the nation requirement to conduct focused reviews for all autism only referrals, referrals for a person from a black and minority ethnic background and any reviews that we could ascertain further learning from. This will be reviewed at the end of Q4. National Priorities 2024/25 The national LeDeR team have set out several high-level impact actions for all local LeDeR teams to address in 2024/25. 1 Reduce avoidable mortality in the 3 clinical priority areas for Learning Disability and Autism 2 Focus on co- morbidities associated with premature death and Advanced Care Planning including DNACPR / ReSPECT 3 Assure and Sustain Performance 4 Improve the quality of LeDeR reviews and actions from learning 5 Improve access and understanding of the importance of LeDeR review 6 Improve accuracy of Learning Disability Registers On page 8 we will explore these further linking them to the trends and workstreams within Coventry and Warwickshire. 3

Notifications and Completed Reviews First half of 2024/25 Notifications received Q1 Q2 Learning Disability or Combined Learning Disability and Autism Diagnosis of Autism Only Within the referrals received Ethnicity of black or ethnic minority background 15 9 24 1 3 4 1 1 2 2 0 2 Out of Scope Open Reviews as of 30.09.24 Completed Reviews in Q2 Of the completed focused reviews: 11 Pneumonia 30 Open Reviews 16 Completed Reviews 2 Black, Asian, or Minority Ethnic (In both cases they also has a cause of death of, or relating to pneumonia) Of these 30 reviews, 10 reviews remain on hold awaiting outcomes of external investigations including safeguarding, police, and seriousincident reporting. 0 Constipation Year of Notification 1 from 22/23 12 from 23/24 3 from 24/25 Year of Notification 4 from 22/23 5 from 23/24 21 from 24/25 0 COVID-19 11 Focused 5 Initial 12 Focused 18 Initial 0 Autism 0 Detained under the Mental Health Act in 5 years 0 Other learning to be taken 4

Quality of Care All reviews are graded on the quality of care and availability and effectiveness of services. The table below details the gradings for Q2. Definition Quality of the care the person received Review level Focused 6 - Excellent and exceeded the expected standard 5 - Good and met the expected standard 8 Availability & effectiveness of services Focused 0 Initial 1 Initial 0 1 2 7 4 4 - Fell short of the expected standard, but this did not significantly impact on the person s wellbeing 3 - Fell short of the expected standard and did impact on well-being but did not contribute to the cause of death 2 - Fell short of the expected standard and did impact on well-being and/or had the potential to contribute to the cause of death 1 - Fell short of the expected standard, and this contributed to the cause of death 1 1 4 1 1 0 0 0 0 0 0 0 0 1 0 0 Review graded as 1 - this relates to a review that had been on hold for a protracted period of time due to other investigations. Once the LeDeR review was able to be conducted learning and actions had already been completed by the ICS and no further action was required. 5

Review Data Cause of death Gender 10 8 5 were females 6 4 8 2 1 1 1 2 1 2 0 11 were males RESPIRATORY SEPSIS ORGAN FAILURE NEUROLOGICAL DEMENTIA CANCER GASTROINTESTINAL Respiratory deaths continue to be the leading cause of death. In 10 of the 16 reviews completed Pneumonia was stated on the death certificate. Age Place of death 81% of deaths occurred in a hospital setting Home 19% UHCW 25% 60-69 (7 people) 50-59 (3 people) 18-29 (2 people) 40-49 (2 people) 70-79 (2 people) SWUFT 19% 61.5 years was the median age of death, with ages ranging from 20 72 years of age. GEH 37% 6

Focused reviews NHSE KPI s The NHSE KPI is for a minimum of 35% of reviews to be focused. As of September 2024, Coventry and Warwickshire are performing at 65%. COVENTRY AND WARWICKSHIRE 65% MIDLANDS 42% Timescales ENGLAND 30% The NHSE KPI is for all reviews to be completed within 6 months of notification. Coventry & Warwickshire have completed 100% of reviews within 6 months, as of September 2024. COVENTRY AND WARWICKSHIRE 100% MIDLANDS 42% ENGLAND 30% 7

Positive practice community liaison nurse went over and above to ensure that B was able to access breast screening though she was in a wheelchair This gentleman received excellent continuity of care in a bespoke package that was delivered in his family home by the same carer for 20 years. His family were extremely happy with the care he received. Areas for improvement We are continually seeing a lack of through documentation regarding cancer screenings and best interest decisions that are made. Measuring and recording of weight is inconsistent across Coventry and Warwickshire. Referral pathways for people with above and below healthy BMIs are unclear. 8

Coventry and Warwickshire 2024/25 Key Aims, Measurables and Progress. National Aim Reduce avoidable mortality in the 3 clinical priority areas for Learning Disability and Autism Coventry and Warwickshire Key Aims Measurables Progress during Q2 To explore trends and data for deaths where respiratory, cardiovascular & cancer are the main cause Deaths recorded Subgroup work during Q1 focused on Coventry and Warwickshire's leading cause of death, pneumonia and aspirational pneumonia. During Q2 we have produced easy read document for Pneumonia, Aspiration Pneumonia and the Pneumococcal Vaccine. During Q3 these will be taken to our focus group for experts by experience to evaluate and we aim to launch our Pneumonia information pack in November. Collaborative working with CWPT cancer project continues. Systemwide work has continues in line with the new NHSE guidelines for health and care passports. This was addressed with our Q2 subgroups. During Q3 CWPT will continue work and feed back to the subgroup. Avoidable deaths To continue to support other work programmes to allow for the LD/A voice and their needs to be heard LeDeR Subgroup to explore and action what work is needed in these areas 9

National Aim Focus on co-morbidities associated with premature death and DNACPR/ ReSPECT Coventry and Warwickshire Key Aims To explore local available data on the prevalence of co-morbidities for people with a learning disability and autistic people in Coventry & Warwickshire e.g. epilepsy, obesity, mental health Measurables Review data Progress during Q2 AHC Uptake:The latest official data published by NHS England Digital shows that 1,076 AHCs were delivered between April - August 2024. If also including the September figure obtained from our local SitRep (227), this would show a cumulative figure of 1,303 for April Sept, which is 269 AHCs more than at the same stage of 2023/24. Local DNACPR / ReSPECT audits To collect data on co-morbidities within our LeDeR reviews to notice any local trends and themes AHC Quality: Our report detailing the 2023/24 Quality & Under-served Population has been signed off is in now publicly available here. Scoping commenced to be able to better identify those with a learning disability who are end of life and how to improve end of life care planning for those individuals. Continue to link in with systemwide Advance Care Planning including DNACPR/ReSPECT work programmes Completed reviews have identified the need for dedicated work around weight management. During Q2 we have started work within our subgroup on weight management of both over and underweight people. Data and resource pathways are being collated, work to continue into Q3. LeDeR intelligence will continue to feed learning themes into Palliative and End of Life Care work programmes. 10

National Aim Assure and Sustain Performance Coventry and Warwickshire Key Aims Measurables Progress during Q1 All reviews to be completed within 6 months Reviews completed Coventry and Warwickshire LeDeR team continues to meet national KPI s (see page 7) The NHSE KPI is for all reviews to be completed within 6 months of referral. Coventry & Warwickshire have completed 100% within 6 months, as of September 2024. At least 35% of completed reviews to be focused Focused reviews complete The NHSE KPI is for a minimum of 35% of reviews to be focused. As of September 2024, Coventry and Warwickshire are performing at 65%. During Q2 we have successfully recruited into 3 LeDeR positions and we look forward to welcoming the new members of the team during Q3 this will ensure a sustainable LeDeR programme team. 11

National Aim Improve the quality of LeDeR reviews and actions from learning Coventry and Warwickshire Key Aims Measurables Progress during Q2 Partake in peer review opportunities Quality of reviews Allied Health professionals identified to join the LeDeR Local Governance Group Feedback learning from peer review into LeDeR programme team Two Clinical Lead Learning Disability GPs have been appointed to work alongside the LeDeR programme, as well as the wider LDA workstreams in the clinical transformation team Strengthen the quality of reviews by including allied health professionals and primary care in the review process and governance group Recruitment of another expert by experience has been secured to further inform the LeDeR programme Our Local Area Contact continues to partake quarterly in peer supervision with other ICB s across the midlands Peer supervision for senior reviewers with other ICB s across the Midlands has commenced. We presented at the LeDeR Peer support group sharing to other systems how we are reporting on the high impaction actions outlined by NHSE. 12

National Aim Improve access and understanding of importance of LeDeR review Coventry and Warwickshire Key Aims Measurables Progress during Q2 Continue to promote LeDeR across all underserved communities Ethnicity reporting Autism reporting Links with Coventry and Warwickshire Provider Forum established. The LeDeR programme has linked in with lead MEOs in all acute trusts to help improve accuracy of reporting especially for those with a diagnosis of autism or from ethnic minority backgrounds Continue to link in with other work programmes to help promote LeDeR Our Annual Report will highlight key messages and spread awareness for underserved communities Intersectionality working group continues to explore local available data Our AHC Quality report has key recommendations around the importance of accessible and accurate ethnicity data this has been shared and presented locally and nationally. Links with Homelessness services have been made to explore the promotion of LeDeR within an underrepresented population. 13

National Aim Improve accuracy of Learning Disability Registers Coventry and Warwickshire Key Aims Measurables Progress during Q2 Use gold standard GP practice to create tool kit for improving learning disability registers including list cleansing Number on learning disability register measured per practice LD Awareness Sessions (for GP Practices): The first of four 2024/25 virtual LD Awareness sessions took place on 18th July. Delivered by LD nurses from CWPT s Community LD Team, the content includes key AHC messages, along with the importance of reasonable adjustments and findings from the LeDeR programme, amongst other important areas regarding supporting people with a learning disability in a GP practice setting. Use those accredited with the Learning Disability Friendly Badge to pilot tool kit Continue to explore local population data Learning Disability Friendly Badge: Our first two panel meetings (in April and July) have seen a total of 10 GP practices be awarded with the Learning Disability Friendly Badge. The panels consist of different members of the ICS, along with an expert by experience and project workers from the local charity, Grapevine. The next panel meeting will take place on 18th October to look at new applications sent in from practices. We will continue to support practices and cascade messages around issues with inaccurate coding on Learning Disability registers Collaborative working with the ICB Quality team to help create a resource pack for practices on how to improve the uptake and quality of AHCs 14

Glossary AHC Annual Health Check CWPT Coventry and Warwickshire Partnership Trust DNACPR Do Not Attempt Cardiopulmonary Resuscitation DoLS Deprivation of Liberty Safeguards GP General Practitioner GEH George Elliot Hospital ICB Integrated Care Board ICS Integrated Care System KPI Key Performance Indicator LeDeR Learning from the lives and deaths of people with a learning disability and autistic people LD Learning Disability LD/A Learning Disability and Autistic People MCA Mental Capacity Act NHSE National Health Service England Quarter 1: 1st April - 30th June Q1 Quarter 2: 1st July - 30th September Q2 Quarter 3: 1st October - 31st December Q3 Quater4: 1st January 31st March Q4 ReSPECT Recommended Summary Plan for Emergency Care and Treatment SWUFT South Warwickshire University Foundation Trust UHCW University Hospital Coventry and Warwickshire 15