Learning Disabilities Mortality Review

Baroness Keeley Excerpts

Tuesday 8th May 2018 Commons Chamber

[Barbara Keeley (Worsley and Eccles South) (Lab)]

To ask the Secretary of State for Health and Social Care to make a statement on the learning disabilities mortality review. [Interruption.]

[Mr Speaker]

Order. There is a certain amount of chuntering from a sedentary position. The Secretary of State has been with us, but Minister Caroline Dinenage will answer the urgent question, and we look forward to her answer.

[The Minister for Care (Caroline Dinenage)]

The Government are absolutely committed to reducing the number of people with learning disabilities whose deaths may have been preventable and have pledged to do so with different health and care interventions. The learning disabilities mortality review programme was established in June 2015; it was commissioned by NHS England to support local areas in England to review the deaths of people with a learning disability. Its aims were to identify common themes and learning points, and to provide support to local areas in their development of action plans to take forward the lessons learned.

On 4 May, the University of Bristol published its first annual report of the LeDeR programme, covering the period from July 2016 to November 2017. The report included 1,311 deaths that were notified to the programme and set out nine recommendations based on the 103 reviews completed in this period. The Government welcome the report’s recommendations and support NHS England’s funding of the programme for a further year at £1.4 million. We are already taking steps to address the concerns raised, but the early lessons from the programme will continue to feed into our work, and that of our partners, to reduce premature mortality and improve the quality of services for people with learning disabilities.

[Barbara Keeley]

Mr Speaker, I think it is disgraceful that the Secretary of State has just run out of the Chamber, rather than answering this question himself—it is disgraceful.

Seven years after Winterbourne View and five years since the avoidable death of Connor Sparrowhawk, the findings of the review show a much worse picture than previous reports about the early deaths of people with learning disabilities. One in eight of the deaths reviewed showed that there had been abuse, neglect, delays in treatment or gaps in care. Women with a learning disability are dying 29 years younger than the general population, and men with a learning disability are dying 23 years younger. Some 28% of the deaths reviewed had occurred before the age of 50, compared with just 5% of the general population who had died by that age.

The Secretary of State announced to the House in December 2016 that he would ask the review for annual reports on its findings, so why was a review of this importance published during the recess, before a bank holiday weekend in the middle of local election results, giving Members little chance to scrutinise its findings? When asked about the report on the “Today” programme on Radio 4, Connor Sparrowhawk’s mother, Dr Sara Ryan, said that she was

“absolutely disgusted by the report”

and that the way it had been published at the beginning of a bank holiday weekend

“shows the disrespect and disregard”

there is for the scandalous position of people with learning disabilities shown in the report.

Only 103 of 1,300 cases passed for review between July 2016 and November 2017 have been reviewed. That is a paltry number. The report cites a lack of local capacity, inadequate training for people completing mortality reviews and staff not having enough time away from their duties to complete a review.

If there are issues around capacity and training, what is NHS England doing to rectify this? Sir Stephen Bubb, who wrote the review into abuse at Winterbourne View, said this in response to the report:

“there can be no community more abused and neglected than people with learning disabilities and their families. How many more deaths before we tackle this injustice?”

Dr Sara Ryan said:

“things have actually got worse than they were 10 years ago”.

What action will the Government take to show the families of people with learning disabilities that their relatives’ lives do count?

[Caroline Dinenage]

I thank the hon. Lady for raising this issue; the report makes for very troubling reading.

On the date of publication, the hon. Lady will be aware that this was an independent report prepared by the University of Bristol and commissioned by NHS England, which wanted to look into this really important issue, and because it was an independent report, it did not actually alert us to publication, so we had no more notice than she did. We are investigating through NHS England and others why that happened.[Official Report, 9 May 2018, Vol. 640, c. 8MC.]

As the report clearly identifies, there is still more work to do, and we will work with partners to see how the recommendations may be implemented. We are committed to learning from every avoidable death to ensure that such terrible tragedies are avoided in the future. She mentions Dr Sara Ryan, whose son, Connor Sparrowhawk, died in such tragic circumstances in my own Southern Health Trust area. She and other parents like her are testimony to the incredible dedication of people who have worked so hard to get justice for their loved ones at a time when they feel least able to do so.

We have done several things already. We have introduced a new legal requirement so that from June every NHS trust will have to publish data on avoidable deaths, including for people with a learning disability, and provide evidence of learning and improvements. We are the first healthcare system in the world to publish estimates of how many people have died as a result of problems in their care. Learning from the review is also informing the development of the pathways of care published by NHS England and the RightCare programme, which is tailored to the needs of people with learning disabilities. Pathways on epilepsy, sepsis and respiratory conditions will be published later this year.

We have introduced the learning disability annual health checks scheme to help ensure that undiagnosed health conditions can be identified early. The uptake of preventive care has been promoted and improved, while the establishing of trust between doctors and patients is providing better continuity of care. We have also supported workforce development by commissioning the development of learning disabilities core skills education and training framework, which sets out the essential skills and knowledge for all staff involved in learning disability care.

As I said, the report makes for troubling reading, but we asked NHS England to commission it so that we might learn from these deaths and make sure that trusts up and down the country are better equipped to prevent them from happening in the future.