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Learning Disabilities Mortality Review

Volume 791: debated on Wednesday 9 May 2018


My Lords, with the leave of the House, I will repeat the Answer to an Urgent Question given yesterday by my honourable friend the Minister for Care on the Learning Disabilities Mortality Review Programme annual report.

“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, as it is known, 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 £1.4m. 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”.

I thank the Minister for repeating that briefing. He may find that the decision about the date of the publication was actually that of NHS England and, frankly, publishing it on the Friday before a bank holiday is either incompetent or shameful. However, seven years after the Winterbourne View scandal and five years since the avoidable death of Connor Sparrowhawk, the findings of this review show a much worse picture than previous reports about the early deaths of people with learning difficulties. One in eight of the deaths reviewed so far show there to have been abuse, neglect and delay in treatment and gaps in care. Women with a learning disability are dying 29 years younger, and men 23 years younger, than the general population; 28% of the deaths reviewed had occurred before the age of 50, compared with just 5% in the general population. This is a terrible situation.

I would like to ask the Minister two questions. First, almost one in 10 of the people who have died have been in out-of-area placements, without the support of family, friends, or any local, familiar community support. The Government have repeatedly said that such placements must be avoided, so will the Minister tell the House what action is being taken to ensure that government statements and guidance on this matter are being followed? Secondly, will the Minister expand on the last part of the Statement, and tell us what action the Government are taking to address the alarming gap in life expectancy of people with learning difficulties?

I thank the noble Baroness for her questions and agree with her that it is a troubling report; it paints a troubling picture of the shockingly poor outcomes that people with learning disabilities have in terms of their mortality and morbidity. I would not disagree with her about that picture and I will come to the actions we are taking to try and address it.

On the publication, I agree with her that the timing was less than ideal. The department did not have sight of it; it was an independent report commissioned by NHS England. We are investigating that, but I agree it was not done as it should have been and we will endeavour to ensure that this does not happen again. On the areas of policy that she referred to, on out-of-area placements there is a programme called Building the Right Support, which is trying to increase the amount of care delivered in community settings, bringing people with learning difficulties, disabilities and autism out of in-patient care to more suitable care in the community. The intention is to reduce the use of in-patient beds for people in mental health hospitals by 35% to 50% between March 2015 and March 2019. It is an attempt to locate much more of that care in the community.

The noble Baroness also asked about other actions we are taking to improve outcomes. I want to focus on the annual health checks that are now available for adults and young people from 14-plus years. That is happening every year. We know the use of these checks is increasing; it has increased by 17% year on year up to 2017-18. There is a real ambition to raise that further by 64% in 2018-19 compared to 2016-17. We know this group does not always feel equipped to come forward and bring health issues to the notice of the health system. It needs extra support; it needs people to be on their side, checking in with them to make sure their issues are addressed. I think this is one way in which we will make some difference.

My Lords, I declare my interest as chairman of a learning disability charity that provides services for 2,500 adults in England. This report makes for uncomfortable reading for anyone involved in the sector and it should shock the general public. We are judged by how well we as a society care for those who are weak and vulnerable. On this count, we have failed. Each year, the deaths of 1,200 people with learning disabilities are avoidable. The standard of their care is not fit for purpose. There are not enough learning disability specialist nurses in the NHS and support staff are no longer being funded to support people with a learning disability in a healthcare setting.

I have three questions for the Minister. Do either the Department of Health and Social Care or Health Education England collect figures on how many health professionals attend training in dealing with people with a learning disability? What guidance is given to staff about the provision of written material in an accessible format? Finally, once admitted, learning disabled patients lose their funding from the local authority so they have no one who knows or understands them and they are left frightened and alone. Does the Minister believe this should be the case?

I thank the noble Baroness for raising excellent questions. We know that there is a need for more specialist nurses, and indeed that is one reason for the expansion of the number of nurse training places. The education and training of staff is a focus of the recommendations of this report and, equally, of the Mencap report. If noble Lords have not read that, I commend it too. Because it is a very good point, I will look into whether we are tracking the number of people who access training. Certainly there is now, and has been since 2016, an education and training framework for the care of people with learning disabilities. I believe that there is also one to follow for adults with autism, and that is welcome. However, as the noble Baroness says, it is about making sure that the staff use that training.

On the noble Baroness’s point about advocacy, I did not realise the funding issue that she raised existed. I will take that back and investigate it. I know that NHS England, the LGA and the Association of Directors of Adult Social Services have put out joint guidance on advocacy for this group of people, but I will investigate the funding point and write to her.

My Lords, I declare my interest as the chair of a social enterprise that creates communication resources for people with learning disabilities. My own research more than 25 years ago uncovered very similar shocking inequalities. The noble Lord has responded to a question about education but is it not now time for there to be mandatory education for all healthcare professionals? This is not a specialist matter. Does he agree that such training should be co-delivered by people with learning disabilities in order to reduce the fear and lack of understanding among health professionals when it comes to making reasonable adjustments? What action will be taken now?

The point that the noble Baroness makes about the involvement of people with learning disabilities in this process is critical. I did not respond to a question from the noble Baroness, Lady Jolly, about communications with people with learning disabilities. Having written a manifesto in the past and having had it translated into the Easy Read format, I know that this is critical. I know that there are attempts to make sure that communications are made in that format where it is helpful to do so.

On the noble Baroness’s question about training, we have a really good template which my honourable friend Caroline Dinenage mentioned in the other place yesterday, and that is dementia training. It is tiered, with tiers 1 and 2, and it has been rolled out very broadly across the health and care sectors with great success. Therefore, I think that we have a template for doing this, and I know that my honourable friend is taking that forward. It was a specific recommendation in the report by the University of Bristol. My honourable friend committed to take forward with NHS England all those recommendations, and that is what we will endeavour to do.

My Lords, given that the report recommends that there should be a named healthcare co-ordinator, yet there is a serious shortage of experienced learning disability medical and nursing staff and it will take some time for trainees to feed through the system, have the Government considered discussing with the GMC and the Nursing and Midwifery Council ways of attracting back into the service older, currently retired professionals who might have a great deal of wisdom and might be motivated to work in a specific area, act as a person’s advocate and provide on-site teaching in conjunction with the person? They could take on the role of communicator and navigator to develop a strategic pathway for the person with learning difficulties or disabilities, and they could also have a role in teaching people about the signs of sepsis, pneumonia and so on, so that there are early alerts.

The noble Baroness makes an excellent point. Clearly there is a need to recruit healthcare co-ordinators. One positive thing that I would highlight is a recommendation in the report from the University of Bristol regarding the sharing of health action plans between health and care agencies. That is already happening and is one positive step. Her idea about bringing back into the profession more experienced professionals to act as advocates is a very good one. A concerted effort is being made to do that through the Return to Practice programme. I do not know whether there is a specific strand relating to people with learning disabilities but I will take that away and investigate it.

On her point about signs of sepsis, pneumonia and other diseases, which are among the causes of this early mortality, some good progress is being made. NHS England is creating new pathways in those areas specifically designed for people with learning disabilities, and I believe that it will be publishing some of them this year.