The LeDeR Programme supports local areas in England to review the deaths of people with learning disabilities aged 4 years and over. Its main aims are:

• To support improvements in the quality of health and social care service delivery for people with learning disabilities.
• To help reduce premature mortality and health inequalities for people with learning disabilities.

A confidential telephone number and website enables families, health and social care providers and other key people to notify the LeDeR team of the death of someone with learning disabilities.

An initial review of the death will then take place. The purpose of this is to provide sufficient information to be able to determine if there are any areas of concern in relation to the care of the person who has died and if indicate, a more in-depth, multiagency review will then be conducted to see if any further learning could be gained that would contribute to improving practice. The reviews also identify areas of good practice which can be shared.

As part of the review, the local reviewer would speak to family members, friends, professionals and anyone else involved in supporting the person who has died to find out more about their life and the circumstances leading to their death.

The Annual Report on Learning Disability Mortality Reviews (LeDeR) for Barnsley 2019/20 can be viewed below.

Barnsley LeDeR Annual Report 2020 - 2021

TheLeDeR Annual Report for 20/21 was approved by the Barnsley CCG quality and patient safety committee.  on 19^th August.

 

Barnsley LeDeR Annual Report 2019 - 2020

This report was approved by the Barnsley CCG quality and patient safety committee. 

 Background Information

1) National picture

Information from the national LeDeR report published in July has been presented in an update to the previous committee.

Committee members’ attention is drawn to the statistics and recommendations listed in that report as a starting point for discussions about quality and improvement of LD care provision in Barnsley.

Nationally, there is a drive to embed Annual Health Checks (AHCs) for all people with a learning disability and this will become a key deliverable.

2) Local update on reviews

2.1 At the previous report to QPSC  the local position was:

• 57 cases in the backlog cohort

• 42 backlog cases being completed by NECS
• 11 reviews in backlog allocated to Barnsley CCG’s reviewers
• 2 reviews of deaths between 1^st March and 31^st May 2020 allocated to a CCG reviewer and are to be reviewed as a priority due to possible Covid 19.
• 4 new reviews (since July 2020) – unallocated at present
• A number of previously completed reviews are either in archive or awaiting Quality Assurance checks / approval. The LAC is currently working through these and will be compiling themes for learning into action. 

2.2 The current position is:

• 26 outstanding reviews in the backlog cohort
• NECS now have 11 outstanding reviews to complete – of all completed reviews all have been approved by the LAC and accepted and archived by LeDeR
• NECS have returned 2 reviews to the CCG to arrange Multi Agency Reviews (MARs), as concerns were identified that require further investigation and actions
• Barnsley CCG local reviewer has completed 3 reviews which have all been approved by the LAC and accepted and archived by LeDeR
• Barnsley CCG has 8 backlog reviews to complete before December 31^st 2020
• Barnsley CCG has 5 new reviews – all are currently within allocation and completion timeframes

2.3 It has been identified by the local reviewer and NECS that a key factor holding up completion of reviews is obtaining GP notes, with some GP practices citing resource issues and requesting funding for providing information. This can usually be resolved with and intervention by the LAC. If reviewers can gain direct access to the GP records systems this tends to be the best resolution. A further factor is that Structured Judgement Reviews (SJRs) for people who die in hospital have not been completed in all cases. This held up a number of reviews. NHSEI issued guidance which has enabled some reviews to be completed in the absence of an SJR and the issue has been resolved in conversations with BHNFT. SJRs will now be completed in all cases.

2.4 Engagement with families shows a mixed picture. As many of the cases passed away between several months and 1 – 2 years ago, it is not surprising that some families feel they have moved on. Whilst this is understandable, it means that a less rich picture of the person is gained and also there is a missing perspective about the care they received.

2.5 The CCG has been awarded a small amount of funding through the South Yorkshire and Bassetlaw Integrated Care System (SYBICS) (IRO £6,000) towards increasing its reviewer resource. The LAC has recruited reviewers from SWYFT on a case by case basis and has also offered overtime to the CCG’s local reviewer.

Correspondence has recently been received with a further offer of a small amount of funding IRO [XXXX]. One colleague in SWYFT has been allocated a review and this is progressing. A further colleague has recently completed training and is waiting to be added to the system by the LeDeR team. A suitable case has been identified and will be allocated. The CCG’s local reviewer acts as ‘buddy’ to the SWYFT reviewers. BMBC have also been approached to request if any Social Workers would be willing to train as reviewers. A plea has also been made if they are able to arrange the MARs for the 2 cases that require it.

2.6 NHSEI has made a central regional administrative resource available to CCG’s. This is to help with collating and uploading information. The local reviewer will use this resource as much as possible to alleviate admin resource pressure within the CCG and to expedite information gathering.

2.7 In all cases where information has been fully collated, the CCG’s local reviewer has progressed cases quickly. Three cases have been completed and signed off. A number of cases are progressing well and the LAC and local reviewer meet regularly to discuss the completion trajectory. As things stand currently, completion by the due date should be possible. This statement is made with some caution as Wave 2 of the pandemic may affect factors such as local reviewer resource or the ability to collate information necessary to complete reviews.

3) Emergent themes from completed reviews

3.1  A picture is emerging from the archived reviews of causes of death that are in line with main themes from the national findings:

• Respiratory conditions, strong theme is Aspiration Pneumonia
• Cardiovascular disease
• Epilepsy related
• Cancer
• 2 deaths during Covid 19 Wave 1 – 1 where Covid 19 not the cause of death, the other case is currently being reviewed

3.3 The LAC is currently setting up a tracker for all archived cases in line with national guidance and more detailed thematic data will be analysed and presented to a future committee and used to inform and influence strategic and operational planning across Barnsley.

3.2 More work is needed to understand the number of deaths in Barnsley and if they are being accurately captured. The LAC is currently seeking to review the Learning Disability joint register to understand the current position in terms of whether Barnsley are certain of the LD population and if deaths are being recorded correctly. 

3.3  Some general themes are emerging about how local health services are managing the health of people with learning disabilities:

• Inconsistent picture re: local GPs routinely carrying out Annual Health Checks (AHCs)
• The need for health services to make reasonable adjustments, especially for people with complex behaviour
• Correct application of Mental Capacity Act is variable

4) Learning into action

4.1 As the Barnsley picture is only just emerging it is not possible at this stage to give a comprehensive view of how health and social care systems in Barnsley need to approach the care of people with learning disabilities. From the themes already identified there is scope to work with local GPs to provide AHCs. Working this into the Primary Care Network DES may need to be considered.

4.2  Barnsley CCG have joined the ICS LeDeR ECHO training faculty and will be involved in designing and delivering training to the caring work force in the next few months.

4.3 As part of the care homes support, NHSEI have supplied a number of Pulse Oximeters to care homes in the borough. The LAC has negotiated a number of these to be distributed to community residential and supported living services and also to the 4 day centres. The aim of this is to carry out a pilot to use the Oximeters and training package that comes with them to determine if any positive impact is made, thus avoiding any potential deaths form respiratory deterioration.

4.4 Although Barnsley has some way to go in fully understanding the context and delivery of the LeDeR programme locally, progress has been made in the recent months and the position is stronger in terms of completion of reviews and the available data to feed into commissioning structures and affect future outcomes for Barnsley’s learning disability community.