This report for Cornwall and the Isles of Scilly is the first report and covers the period 1 July 2017 to 31 December 2019. The purpose of the report is to share the findings and the learning from the reviews completed.
The learning disability mortality review (LeDeR) programme is a national project delivered by the University of Bristol and was introduced following the confidential enquiry into premature deaths of people with a learning disability (CIOPLD 2013). The enquiry had found that for every 1 person in the general population who dies from a cause of death amenable to good quality care, 3 people with learning disabilities will do so. The enquiry highlighted that people with learning disabilities tended to die 20 years younger than those without a learning disability. The LeDeR programme was established to support local areas to review the deaths of people with learning disabilities, identify learning from those deaths, and take forward the learning into service improvement initiatives. The programme is led by the University of Bristol, and commissioned by the Healthcare Quality Improvement Partnership (HQIP) on behalf of NHS England.
The NHS long-term plan confirms that the NHS will continue to fund the LeDeR programme. It stated: “Across the NHS, we will do more to ensure that all people with a learning disability, autism, or both can live happier, healthier, longer lives.” The plan went further in saying: “Action will be taken to tackle the causes of morbidity and preventable deaths in people with a learning disability and for autistic people” and “the whole NHS will improve its understanding of the needs of people with learning disabilities and autism and work together to improve their health and wellbeing”.
Cornwall and the Isles of Scilly has a combined population of 543,523 people. There are 2.890 people with a learning disability on the GP registers.
The LeDeR programme in Cornwall and the Isles of Scilly is led by NHS Kernow. The programme has a learning disability programme manager, supported by a project manager and a recently appointed interim local area contact.
Since the LeDeR programme commenced there have been 67 deaths reported between July 2017 and Dec 2019 to date. 15 of these deaths having been reviewed. There have been a number of challenges faced both nationally and locally sourcing reviewers with adequate capacity to undertake the work.
An additional £5 million was invested by NHS England and NHS Improvement (NHSE/I) in 2019/2020 to address the backlog of un-reviewed cases and increase the pace with which reviews are allocated and completed. Cornwall has been provided with £35k funding from NHSEI to fund reviewers on a zero hours contract. Alongside this a backlog project run by North England Commissioning Support (NECS) has been allocated 23 of the Cornwall reviews to complete.
LeDeR reviews are not investigations of care but aim to develop learning and improve care.
The focus of the reviews is to:
For each death, there is an initial review. Someone who knew the person well, such as a family member, is invited to contribute their views. This is a fundamental part of the review. The reviewer will also look at relevant case notes relating to the person who has died and will make contact with relevant organisations/agencies to discuss cases and access notes if required. This involves the range of agencies that have been supporting the person who has died (e.g. health and social care staff).
The review looks at 3 levels of care:
Once a review is completed it is submitted to the local LeDeR review panel. This panel is chaired by the 1 appropriate person (LAC) with representation from health, social care, acute hospital, the community learning disabilities team, a person with a lived experience of learning disabilities, families and carers. The purpose of the panel is to:
The LeDeR steering group has been in place since the commencement of the LeDeR programme in 2017.
The steering group consists of representatives from a number of statutory and voluntary agencies working alongside key stakeholders including people with learning disabilities, families and carers.
The steering group reports to the Cornwall and Isles of Scilly Safeguarding Adults Board and the NHS Kernow learning disabilities and autism steering group.
*Open includes –waiting to be allocated, with a reviewer and part of back log project
The total number of deaths reported from the start of the LeDeR programme from July 2017 to December 2019 is 67, of which:
Of the 15 completed reviews, pneumonia was identified as the primary cause of death on the majority of death certificates. Other causes of death included those which were cardiac related and cancer related.
There were a total of 64 people eligible for an LeDeR review during this period with an equal proportion of males and females.
Average age of death total: 55
Average age of death adults: 58
Average age of death children: 15.5
A total of 32 people in the cases reported were noted to have passed away in 1 of the acute hospitals serving the population of Cornwall (1 of which is sited in Devon), however the number of individuals who died in their usual place of residence was lower at 28. The 3 people who died in the hospice were all under the age of 18.
Of 15 completed reviews, 3 have been referred to the Office of the Coroner.
The majority of our reviews graded the quality of care provided at 2. However, 2 reviews showed a significant concern around the quality and timeliness of care and scored 5 and 6.
Although the quality of care scorings are an indicator, we have reviewed each case through the local LeDeR panel to assure both the quality of the review and the learning to be taken forward into recommendations for change.
1 case has required a multi-agency review which resulted in a number of recommendations regarding primary care interface and accessibility of professional input. The key recommendations from the review were:
The remaining case that was scored as unsatisfactory has been subject to review by the local acute hospital. As a result of the review, the acute hospital (Royal Cornwall Hospitals NHS Trust (RCHT)) co-produced a short film about the need for individuals with learning disabilities to be treated equitably and fairly. The individual’s mother co-produced the film with the hospital.
As the care pathway over the preceding years for the individual in question was complex and involved other episodes of poor practice and discrimination, NHS Kernow has commissioned a local, parent led organisation to work with the individual’s parent to produce a more in-depth film about his involvement with health services and how things can be improved. When completed, this will be presented to the CCG governing body and published on our website.
There have been 4 deaths of children/young people under the age of 18 reported.
All child deaths follow statutory review processes, including child death overview panel (CDOP) prior to review by LeDeR panel
The 4 deaths are yet to be reviewed by our local LeDeR panel. These will be reviewed in quarter 3 2020.
The following list of recommendations is a headline summary of those made by local reviewers and providers of care and has been ratified by the LeDeR steering group. The LeDeR steering group maintains a learning onto action log for specific recommendations for individual cases.
As a result of LeDeR mortality reviews and other local learning disability mortality review processes, the following developments have been implemented in our local area:
All individuals with a learning disability receiving secondary specialist care receive a check to ensure that the annual health check and flu vaccination have been offered.
RCHT, the local acute hospital, has implemented a series of processes to ensure all individuals are triaged appropriately in ED. A pack has been produced for front line professionals in ED. An ED flowchart for people with learning disabilities has been implemented.
Training for health professionals on the implementation of TEPs for people without capacity has been implemented. An audit has been carried out on all TEPs applied to individuals with learning disabilities and recommendations have been recorded.
A trial of the “bedside folder” for carers of people with learning disabilities has been commenced. This includes an introduction to the ward, a hospital passport and communication sheet.
An acute hospital checklist has been introduced for named health professionals to ensure all reasonable adjustments are being made and the correct referrals processes are in place.
Project funding from NHSE/I has been secured to co-produce 2 patient stories from a family perspective for use in communicating the importance of listening to relatives about their loved ones.
The LeDeR programme has made a slow start with regards to the rate of reviews undertaken. NHS Kernow has, with the support of NHSE/I, recruited to the LAC role to give dedicated time to the programme, ensure timeliness of reviews and ensure that the learning from every individual’s death informs better practice in all of our health and social care services
Every LeDeR review completed is now presented to a panel consisting of people with lived experience, including family members, and professional leads from our health providers. This ensures that learning from deaths can be quickly transformed into action in our primary, secondary and specialist care providers, alongside health and social care commissioners.
The panel provides a safeguard against submitting reviews to LeDeR that have only had scrutiny from 2 clinicians and ensures that a focus from individuals who have experienced the health and social care system is brought to the process.
Our local LeDeR process has benefitted from membership of acute care colleagues at both the steering group and review panel. The structured judgement review process within acute hospitals, as well as the thematic review carried out by RCHT has resulted in clear and measurable actions within our acute sector.
The involvement of family members of the deceased individuals in our LeDeR programme is essential and we wish to build on their current involvement over the coming year. We will be working with NHSE/I to complete a film involving 2 bereaved parents to describe the story of their loved ones, to examine the positive and negative aspects of their care and to ensure that the importance of equitable, fair and safe treatment for people with learning disabilities is understood and championed at a senior leadership level.
The themes that are dominant in the reviews of deaths in people with learning disabilities, whilst based on low numbers of reviews, include:
All 3 of these themes are being addressed through the learning into action grid and through local action plans in the acute and primary care sectors.
The LeDeR programme has been slow to complete reviews and has encountered difficulty in finding a model of reviewing that can meet the demand in our area. The following recommendations are to support the recovery and development of the local LeDeR programme in 2020 to 2021.