Agenda item

The Committee received a presentation from NHS England and Leicester City Council on the Learning Disabilities Mortality Review (LeDeR) Programme. A copy of the presentation slides is filed with these minutes.

For this item the Committee welcomed to the meeting Louisa Whait, Regional Coordinator Midlands and East LeDeR Programme, James Lewis, Business Change Commissioning Manager, Social Care & Education, Leicester City Council, Steven Forbes, Strategic Director Social Care and Education, Leicester City Council, and Heather Pick, Assistant Director, Adults and Communities, Leicestershire County Council.

Arising from discussions the following points were noted:

(i)        There was an explicit requirement for NHS Trusts to notify the LeDeR programme if any patients with learning disabilities died whilst under their care. Once notified the LeDeR programme would conduct a review and ensure they had full information on the background of the deceased and the circumstances leading up to the death. The LeDeR programme had been allocated £1.4million nationally however this resulted in only £16,500 for Leicester, Leicestershire and Rutland. Therefore staff were being required to carry out work on the programme in addition to their normal jobs hence only a small number of reviews had been completed so far. Whilst additional funding for staff would be welcomed, Steven Forbes pointed out that it could be of benefit that local staff were working on this project, rather than additional staff being recruited, as they would be familiar with the local system and were enthusiastic. He stated that in his experience external reviewers were not always as successful. It was expected that once further reviews were completed the Leicester, Leicestershire and Rutland Steering Group would have a better sense of the local trends and issues which needed addressing and it was hoped to have completed 25 reviews by the end of 2018.  It was noted that some reviews were delayed to allow other statutory processes to take place first, or to allow the families of the deceased additional time to come to terms with the loss before investigations took place.

(ii)       Efforts were being made to increase the awareness and understanding of NHS staff with regards to the needs of patients with learning disabilities, and this would comprise of face to face training as well as E-learning to ensure that the experience of patients with learning disabilities was fully communicated. 

(iii)      In response to a question about the impact of Annual Health Checks it was explained that insufficient reviews had been completed to date to be sure of the impact, however it was important to ensure that as many people as possible undertook the checks. Leicester, Leicestershire and Rutland exceeded the national target for health checks by 10%. Supported Living Providers were being spoken to in order to encourage the people they supported to undertake the checks.

(iv)      With regard to a question about the impact of loneliness it was noted that in a significant proportion of the cases reviewed, the person with learning disabilities had been living with other people. However, early indications from the reviews carried out so far were that there was a theme of the person with learning disabilities suddenly losing the input of a key person in their support network. In addition 91% of patients with learning disabilities were not in a relationship therefore it was believed that a person’s relationships with other people did play an important role.

(v)       Members were of the view that more needed to be done to advise children on healthy eating to help prepare them for adulthood. Concerns were raised that due to human rights issues and the patient’s right to choose, action was not being taken by staff regarding young people that did not eat healthily. In response it was explained that patients with the appropriate mental capacity did have the right to choose, however the Mental Capacity Act 2005 permitted staff to intervene where patients did not have the necessary mental capacity.

(vi)      In response to a question regarding how the LeDeR programme could be confident that the current scheme would have a positive impact when similar initiatives in the past had not solved the problem, it was explained that the LeDeR programme covered the whole healthcare system whereas previous reports had focused on specific parts of the system. Conversations were now taking place with partners who had not been liaised with before. In addition the LeDeR programme had a higher profile which helped raise awareness more effectively. Reducing the mortality rates for people with learning disabilities was now a clinical priority for the NHS.

(vii)    There were difficulties with regards to information sharing between partners as a result of data protection regulations and also the inability of different computer databases to interact with each other. The Summary Care Record which was being developed would go some way to helping with these problems. There was an onus on social care staff to take responsibility to share information with partners when appropriate.

(viii)   In response to concerns raised by a Member regarding the lack of timescales in the LeDeR Programme Annual Report it was explained that one of the four clinical priorities for the NHS over the following 10 years was reducing premature mortality for people with learning disabilities and these priorities had tight timescales attached to them.

RESOLVED:

That the Learning Disabilities Mortality Review (LeDeR) Programme be supported.