What is the LeDer Programme?
The LeDeR Programme is the national programme which reviews the deaths of people with learning disabilities across the country. It was established in response to the recommendations made in the Confidential Inquiry into the Premature Deaths of People with Learning Disabilities (2013) with the aim of supporting local areas to review the deaths of people with learning disabilities, identify learning and areas of both good practice and where service improvement is required. There is a national and regional governance framework which the Surrey System feeds into.
The Surrey LeDeR Mortality Review Annual Report covers the period between 1st April 2020 and 31st March 2021, and this reflects the period reported by the national team in the National Annual LeDeR Report. It gives an overview of the LeDeR programme and how this has been implemented across Surrey Heartlands, Surrey Heath and North East Hampshire and Farnham CCG areas. It provides an overview of the number of deaths that have been reported to LeDeR for these areas throughout this period and summaries the learning that has come from the completed reviews.
During this period, the CCG focussed on reviewing the notifications of death of people with a Learning Disability that, as reported last year, had been delayed by lack of dedicated resource to complete them. With the support of the CCG and with additional resource provided by staff employed by the North East Commissioning Support Unit (NECSU), 239 reviews were undertaken during the year with good practice, learning and recommendations for improvement being identified in each case. 152 of these reviews were completed by the local Surrey Heartlands team and the remaining 87 being completed by NECSU.
The key findings from this report in this year included:
- In Surrey, women with learning disabilities died 21.6 years sooner than the general population and men with learning disabilities died 10.7 years sooner than the general population.
- The most common cause of death during this period was Covid-19, followed by pneumonia, sepsis, cancer and aspiration pneumonia.
- There was lower reporting of deaths of people from Minority ethnic communities and disproportionately high numbers of deaths in people who were Black / Black British (but due to the numbers very small this finding must be interpreted with caution).
- 68% of the people who had died had had an annual health check completed and recorded in the last year.
- There was a very low uptake of cancer screening in all of the cases that were reviewed.
- Although not a direct cause of death, it was identified that constipation and polypharmacy (the use of multiple medications) were two recurring factors that were found in the reviews.
- During the first wave of the COVID-19 pandemic, concerns were raised about the potential for “blanket” decisions being made around resuscitation, particularly for more vulnerable populations. As a result, this was reviewed as part of the LeDeR process. We found that ‘Do not attempt cardio-pulmonary resuscitation orders’ were completed correctly and followed in 77% of the reviews. This reflects the work carried out in response to the 2019 LeDeR annual report findings and local recognition of the need to address this potential issue particularly during the pandemic and to continue to do so going forward.
- On completion, the reviews are given a grading of care. 48% of reviews indicated that the care received met or exceeded expected good practice. This is an area of focus for continuous improvement.
There was a lot of evidence of reasonable adjustments being made for individuals to support their care and good practice that also helped improve their experience of care. These included areas such as: Communication of need, specialist equipment provided, good multi-professional liaison, End of Life Care and responsive medical care. Individual families often spoke of the compassionate way that healthcare staff, despite the difficulties of the pandemic had communicated with them and also helped them visit or use technology to talk to their loved one.
Actions and Recommendations
There are a number of actions that have been identified as a result of undertaking our reviews and these have been developed into key priorities that will be focussed on over the coming year. These are:
- To work to ensure that we hear the voices of people with lived experience and others from minority groups. This will help us improve access to services, reduce health inequalities and prevent premature mortality.
- To maintain focus on LeDeR priorities during a time of changing landscapes within the Surrey Clinical Commissioning Group / Integrated Care System (CCG / ICS).
- To improve the uptake of cancer screening across Surrey Heartlands CCG / ICS and ensure that the Mental Capacity Act (MCA) is followed when making decisions around screening.
- To increase confidence and skills in identifying when a family member may be deteriorating through the expansion of the delivery of Restore 2 Mini training to family carers.
- To increase awareness and expand the use of the ReSPECT documentation.
- To support the implementation of the Oliver McGowan training.
- To work with the medication management team to ensure that people with learning disabilities and autism receive the right medication to meet their needs and medication is reviewed regularly.
- To work to ensure that people with learning disabilities and autism receive good bowel management. Surrey Heartlands CCG / ICS will work with both health and social care colleagues to improve awareness and management of constipation to implement best practice across the system.
These recommendations will be taken forward by the Surrey LeDeR Governance Group as part of wider programmes of improvement work across the ICS and progress will be reported within future reports.
More information about the LeDeR programme.