LeDeR Event - 2018/10/12


CPCF Attendees: Gill Davies and Mark Davies



Forum Members For

Allerdale Copeland Furness South Lakes Eden Carlisle
Event Title: How is Cumbria responding to meet the challenges of LeDeR implementation? Learning and sharing event
Event was held by: North East and Cumbria Learning Disability Network. Presentations were also given by representatives of local health authorities and People First
Event took place at: People First Building, Milbourne Street, Carlisle, CA2 5XB
Date of Event:  12th October 2018

The purpose of the Event:

To discuss the findings of the The Learning Disabilities Mortality Review Annual Report (LeDeR) 2017, see link:


For parent carers, or for anyone in fact, this is upsetting to read, as it shows people with learning disabilities live for 20+ years less than the general population, and this disparity may not be getting better.

This is an important review and is now being carried out throughout the country on an annual basis.

The outcomes of the Review and this event:

The reasons why the situation does not appear to be improving may be due to the method of reporting and collection of statistics. There will be annual reviews and the manner of reporting and the number of cases reviewed should improve with time, and a better view of trends, whether for better or worse, will become apparent.

Continued on next page

Other talks mainly centred around improved understanding by professionals of indications of illness and deteriorating conditions affecting people with learning difficulties who cannot express themselves or communicate adequately. On this issue, one point forcefully put forward by providers of services (for example Carlisle Mencap and Chrysallis) and parent carers present, was the need for health professionals (eg doctors) to fully take on board the views of family members and paid carers; when these carers say the person they are caring for is suffering and is seriously ill, medical professionals should fully accept what carers say. There was one case study with harrowing details, where the medical professionals failed to take into account the concerns of the carers.

This was an enlightening event for parent carers, and the organisers stated their hope that for events in future years, more parent carers would become involved and attend.


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