Learning Disabilities Mortality Review

Baroness Jolly Excerpts

Wednesday 15th May 2019 Lords Chamber

[Baroness Blackwood of North Oxford]

I thank the noble Baroness for her important questions. On her first point, which is that the Government have had the report since March, I should like to be very clear that this is not a government report; it is an independent report from the University of Bristol. It is free to publish it when it is ready, although it was commissioned by NHS England, so the Government are not in control of the timetable for publishing it.

The noble Baroness is 100% right, however, on her point about “do not resuscitate” orders. The reports that we have heard that disabilities such as Down’s syndrome are being used by some doctors as a reason not to resuscitate are entirely unacceptable. We are taking immediate action and a letter will be sent to health professionals to make clear that that is not an acceptable reason to put in place a “do not resuscitate” order. On her last point about resourcing and the effectiveness of the LeDeR programme, progress has been made in implementing it: 15 out of 24 of the recommendations have already been completed, and in others we are making real progress. NHS England has trained more than 2,100 experts to carry out reviews, 1,500 reviews have been completed and a further 1,500 are in progress, but I have no doubt that given the situation in which we find ourselves, questions will be taken into account by NHS England and the department.

[Baroness Jolly (LD)]

My Lords, I should declare my interests. I am chairman of Hft, a learning disability charity which cares for more than 2,000 adults. I thank the Minister for repeating the Statement and understand the limitation of her responses, but I am not sure that the Secretary of State’s words will console parents and other relatives of someone with a learning disability. If the Secretary of State were to take immediate action on any part of the leaked report, I should like it to be on the issue that the noble Baroness, Lady Thornton, just raised about “do not resuscitate” orders.

No one dies from a learning disability or Down’s syndrome. The reason for the annual report is to identify why people with learning disability die much earlier than the population average. Why and how well-trained doctors do not know and appreciate that appals me. Can the Minister put a note in the Secretary of State’s in-tray to suggest that this might be an area to look at urgently and remedy quickly? Can she ask him to ensure that all doctors in training learn to care for people with a learning disability, and that that is regularly refreshed as part of their ongoing professional development? Will she flag up to him that I look forward to discussing the report with him as soon as it is finally published?

[Baroness Blackwood of North Oxford]

The noble Baroness is absolutely right that this issue must be a top priority, and I assure her that the Secretary of State is taking it as such. I repeat that it is entirely inappropriate that disability of any kind—in particular, learning disability or Down’s syndrome—should ever be used as a reason for a DNR, and that NHS England will be writing to all doctors to remind them of this fact. It will be made absolutely clear.

The noble Baroness is right that there should be no reason for people with learning disability to have a different life expectancy. A commitment has already been made in the long-term plan to address those challenges, including increasing the uptake of annual GP health checks for people with learning disabilities to 75%, as it is recognised that physical care for those with learning disabilities is not as effective as it should be; creating a digital flag on patient records for all people with learning disabilities and autism by 2023; and reducing the number of in-patients with learning disabilities by half by 2024. We are increasing the pace with which we do that.

The noble Baroness’s last point, which is really important, concerns ensuring that all those working in the health system are trained to treat those with learning disabilities. A consultation on this matter has just closed and we will respond to that in the next two to three months.