We need to tune in to that individual and look beyond what they say or don’t say. If we were to do that we would enhance and save lives. If we don’t, we’ll continue to have people with learning disabilities dying avoidably.Read more
RCN Congress discusses diagnostic overshadowing and the role nurses can play in addressing this particularly for people with learning disabilities.Read more
Two new dramas which get inside the emotional realities of dealing with ethical dilemmas. When a confused young man with no I.D. and a Doctor Who fixation is brought into hospital, the staff have clear rules about how decisions can be made on his behalf. But when he starts to make his own wishes clear, are they right to listen? Starring Gunnar Cauthery, Clare Perkins, Simon Bubb, and Carl Prekopp. With Peter Polycarpou, Gerard McDermott, Jonathan Forbes, James Lailey, Alex Tregear, Susie Riddell and Elaine Claxton. Script Consultant: Jim Blair, St George's Healthcare NHS Trust. Produced and directed by Jonquil Panting.Read more
People with learning disabilities die on average more than 25 years younger than the rest of the population. The death of Sara Ryan's son Connor in NHS care led to today's Learning Disability Mortality Review. She said learning disabilities are now a life limiting conditionView Video
An NHS report has found that people with learning disabilities have a significantly shorter life expectancy than the general population.Read more
He wanted to live: Sister tells of anger over poor NHS care that 'robbed life' of brother who had learning difficultiesRead more
Public Health England Youtube webinar about the early deaths of people with learning disabilities. It’s been put together by Professor Pauline Heslop from University of Bristol, Gyles Glover from Public Health England and John Trevains from NHS England. It was recorded a few weeks ago – but you can still ask questions. It includes up-to-date data from Public Health England and the LeDeR programme.
This is why a review is not an investigation
We continue to be asked about the difference between a review and an investigation. So, LeDeR programme lead Professor Pauline Heslop has written these definitions to help:
Review: A review is usually a proactive process, often without a 'problem', complaint or significant event. It is often undertaken to consider systems, policies and processes. A review is a broad overview of a sequence of events or processes. It can draw on the perceptions of a range of individuals and a range of sources. The resulting report does not make findings of fact, but it summarises the available information and makes general comments. A review may identify some areas of concern that require investigation e.g. if there is some evidence of poor practice, in which case the appropriate recommendation for an investigation should be made.
Investigation: An Investigation generally occurs in response to a 'problem', complaint or significant event. An investigation is often initiated in relation to specific actions, activities or questions of conduct. It is a systematic analysis of what happened, how it happened and why. An investigation draws on evidence, including physical evidence, witness accounts, policies, procedures, guidance, good practice and observation - in order to identify the problems in care or service delivery that preceded the event to understand how and why it occurred and to reduce the risk of future occurrence of similar events.
Watch: Reducing health inequalities for patients with learning disabilities
This short video has been put together in a bid to help reduce health inequalities for patients with learning disabilities. It’s primarily aimed at GPs and GP surgery staff, but contains useful information about the LeDeR programme for everyone. Nicola Payne, clinical champion for London, has helped produce it so GPs can ensure they offer good quality care.
Web-based platform changes have improved auto-allocation
We update the LeDeR Review System twice a year, responding to issues raised by reviewers and local area contacts (LACs). One recent change relates to the auto-allocation of reviews to LACs.
When a notification is made, the LeDeR Review System automatically allocates it to a LAC, based on GP postcode. This was reliant on us being given a GP postcode. So, allocations now use GP postcode, address, phone number, or the deceased’s address, which has improved the allocation of reviews to LACs.
We are also currently testing other changes to the web-based platform, including those related to duplicate notifications, LAC/reviewer changes, and sharing redacted reviews.
eLearning to be rolled out in September
The LeDeR programme is developing an eLearning course to train reviewers, local area contacts and other stakeholders. The course is scheduled for release in September 2018. For reviewers, it is intended that eLearning will form part of a blended learning programme. Once new reviewers have completed the online learning, we anticipate they will be ‘buddied’ with an existing reviewer for their first review.
The eLearning platform will also hold training materials and supporting documents and will be available to access for a refresher, if needed, at any stage after completion.
Learning from deaths guidance
New guidance about working with bereaved families has been produced by the National Quality Board. It’s available here.
There is also a leaflet for trusts to provide to bereaved families, available here.
New LeDeR Learning into Action newsletter
To highlight best practice from around the country, we will be producing a new Learning into Action newsletter. Each edition will focus on a specific topic to tie in with issues identified in mortality reviews.
The first newsletter will focus on Aspiration Pneumonia. Anyone with any actions or best practice in relation to reducing deaths from Aspiration Pneumonia which they would like to be included, should email firstname.lastname@example.org. The topic of following newsletter will be infection (sepsis).
Paula McGowan’s son Oliver died aged 18, after hospital staff gave him a drug that he had pleaded not to be prescribed, having previously suffered a bad reaction.
Paula told BBC Politics Live she believed the death of Oliver, a high functioning autistic teenager from Bristol, could have been avoided if the nurses and doctors were trained about learning disabilities and autism.
Since his death, she has campaigned tirelessly for mandatory training for NHS staff. Her campaign will be debated in Parliament on Monday afternoon.