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The Annual Report of the Learning Disabilities Mortality Review makes for depressing reading

Human rights partner Merry Varney assesses the latest LeDeR review

Posted on 09 May 2018

The Annual Report of the Learning Disabilities Mortality Review - which has the mystifying acronym LeDeR – makes for utterly cheerless reading.
Having had the privilege to work with many families of people with learning disabilities, sadly many of them bereaved, over the past decade, my heart sank on reading the three ‘headline’ learning areas (that is those most commonly identified):
  1. Inter-agency collaboration and communication
  2. Awareness of the needs of people with learning disabilities
  3. The understanding and application of the Mental Capacity Act (MCA): 
It was only a slight relief that the Executive Summary acknowledged:
“Most of the learning to-date echoes that of previous reports of deaths of people with learning disabilities, and the importance of addressing this cannot be over-estimated. We have a responsibility to families and others to ensure that any learning points at individual level are taken forward into relevant service improvements as appropriate.”
Is it any wonder that such a damning report was published, initially without an ‘Easy Read’ version, in an unobvious place on HQIP’s website, on the day of the local council results with very little engagement with the media that I could determine?
The distressing realisation for me from the report is that, having been instructed in many legal cases on behalf of families seeking truth and accountability in relation to the substandard care of a loved one with learning disabilities, the lessons from these cases are not being learned.
Having been able to enjoy  time with my family over the weekend, I couldn’t stop myself thinking about these families who take ‘the battle’ on, challenging substandard care.
In particular, I thought of Eileen Smith’s family, and the efforts of the Senior Coroner for Hertfordshire, who has since retired, who held a full and fearless Inquest into Eileen’s death and helped the family feel like the wider objective of protecting others may have been achieved.
Eileen had a learning disability. She died as a result of a gross failure in her care while she was in hospital. I was instructed by her niece, and, following an appeal, she was granted legal aid for representation in the Inquest.
The Coroner delivered a narrative Conclusion recognising the gross failing and providing a highly critical lengthy ruling. In his findings the Coroner voiced his concerns that Eileen’s purple folder – a folder containing important information about Eileen such as her needs, medical history and important contacts, which was part of a local initiative to improve care for patients with a learning disability – was not properly reviewed on Eileen’s admission. He said:
“…what is the point of having a purple folder with all the details of that person’s disability without studying it carefully and being able to assess the patient in the light of the information contained therein. The learning disability protocol supplied to the inquest also confirmed the importance of the information from carers and I feel there was also a failure not to contact either the home or Eileen’s niece …”
Seems to me to be highlighting similar issues as the LeDeR report….consultation with carers and family is a requirement under the Mental Capacity Act; the purple folder a form of reasonable adjustment not being properly implemented, and yet it also should be a way to promote inter agency communication….
The Coroner’s ruling went on to include this important message to those who had been responsible for caring for Eileen at the time of her death:
"My judgment for a person who has  a learning disability it is so important to be proactive, not to make assumptions and be imaginative in finding ways to ensure that person receives the treatment that need. This involves discussions with experts but in particular those such as carers and family who know the patient well and very importantly the patient knows them."
The Coroner felt the evidence he had heard showed potential risks to other lives, and hence at the end of the Inquest, he sent a ‘Prevention of Future Death report’, by way of a letter enclosing his comprehensive factual ruling, to the Secretary of State for Health. 
It was sent in August 2015, and – as now echoed in the LeDeR report – refers to the need for learning disability awareness training and audits regarding reasonable adjustments. It was sent in the hope of sharing lessons: the Coroner wrote:
“I heard so much about Eileen and was privileged to receive lovely photographs of her. She was clearly a happy and lovely lady and…I find it very sad that she died in such circumstances. I therefore hope that any other similar death can be prevented.”
You can read the Department of Health's response.
I have read it multiple times and struggle to see how it at all  answers the Coroner’s report. 
The same problems still exist. There have been opportunities for change in the past which have clearly not been taken and LeDeR is undeniable evidence of that.  
Will the LeDer report lead to improved care? I certainly hope so, but history suggests this is a forlorn wish.
We are asking for change from a Government who intervened recently in a case against Portugal, in front of the Grand Chamber of the European Court of Human Rights concerning the right to life and the Court noted: 
“the United Kingdom Government emphasised that the Convention contained no express provision recognising a right to the provision of any kind of health care, nor a right to be provided with health care of any particular standard.” 
I think this speaks volumes about why people still have to ‘battle’ over the standard of care received by a loved one and why I’ll continue to help them emphasise that every person with a learning disability is entitled to receive a safe, reasonably adjusted (as appropriate), equal level of healthcare as anyone else.


Merry Varney
Court of Protection Human rights Inquests Judicial review

Merry Varney

Merry is a partner in the human rights department and head of the Leigh Day inquest group