Yesterday, there were two big reports published about people with learning disabilities:
The LeDeR Report is the third annual report of the English Learning Disabilities Mortality Review (LeDeR) programme.
It gives information about people with learning disabilities who have died.
The CQC Report which looks at restraint, seclusion and segregation for people with a mental health problem, a learning disability or autism.
These reports are very important to people with learning disabilities so here is what they say and what we think about it.
What the reports say:
The LeDeR programme has been told about 4,302 people with learning disabilities who have died.
Six out of every 10 of the people who died were male. Four out of every 10 of the people who died were female.
The average age at death for people with learning disabilities who died was 59 years old.
This means women with learning disabilities are dying 27 years younger than the general population.
62% of people with learning disabilities died in hospital. This is much higher than in the general population.
People mostly died from: Pneumonia, Aspiration Pneumonia, Sepsis, Dementia, the heart not getting enough blood, and epilepsy.
Only one third of reviews said that the person had received the best possible care.
Only 48% of deaths reviewed in 2018 received care that met or was better than good practice
Seventy-one adults with learning disabilities received care so bad that it made them unwell or caused their death.
The report then made lots of recommendations, including:
NHS supporting the Clinical Commissioning Groups to look into why people with learning disabilities are dying and developing guidelines to help families voice their worries about their family member’s care.
This report focuses on 39 people who are cared for in segregation on a learning disability ward or a mental health ward for children and young people.
Segregation means they have to stay in a room on their own because the doctors think they might be a threat to themselves or other people
On average, the people in segregation were living 54 miles from their homes. Not all of them lived on wards that were for people with learning disabilities and or autism.
31 out of the 39 people in segregation had autism.
Many staff did not have the right training and skills to work with people with autism who also have behavior that is seen to be challenging.
13 out of the 39 people had to stay in segregation because there was no place for them to go if they left hospital.
The report says that “The system is not fit for purpose” and has failed people who are in segregation.
What we think
We think the findings of these reports are really bad. They show that many people with learning disabilities are not getting the care they need to live good lives.
Although the findings seem shocking, we do not think they tell us anything new.
My Life My Choice has been campaigning for change since the death of Connor Sparrowhawk and the Winterbourne View Scandal many years ago.
We have known for a long time that people with learning disabilities are not getting good enough care.
We think there should be more effort to get people back into the community, rather than locking them up in hospitals.
We are particularly disappointed with the recommendations.
They should recommend more than just ‘consider’ the human rights of people with learning disabilities, do mortality reviews on time or that they do another report.
They should be recommending that everyone has good care and they get people out of hospital and into the community.