People with Learning Disabilities: Acute Illness

Question

Asked by

To ask His Majesty’s Government what assessment they have made of the recommendations in the National Confidential Enquiry into Patient Outcome and Death report Acute illness in people with a learning disability, published on 11 June; and whether they intend to ensure those recommendations are implemented by NHS Trusts.

My Lords, we welcome the National Confidential Enquiry into Patient Outcome and Death’s report and its recommendations. NHS England has circulated learning from the report across the health and care system for regional teams to share it with integrated care boards. NHS accountability arrangements are in place, and immediate improvement actions are under way, including the reasonable adjustment digital flag. The Government are committed to high-quality care for people with a learning disability.

My Lords, enough is enough. Currently, with everything in place, people living with a learning disability still die on average 20 years earlier than their non-learning disabled peers. The key missing part of the jigsaw is a statutory independent review of every such death, legally compelling NHS trusts and other providers to implement the improvements identified. Why are this Government content to rely on the toothless, non-statutory reviews that have changed nearly nothing, and allow this 20-year life expectancy gap to continue?

I certainly accept the point, and I am not quibbling about the number, because 19 years, which is where we are now, is totally unacceptable. In addition, there is the high percentage of avoidable deaths, which I know the noble Lord is very alive to. While I share the view that this is unacceptable, I would not put it all down to reports. I can say that there are strong expectations of ICBs. As I have mentioned, they are kept to account, and we are continually ensuring that the death of every autistic person and those with a learning disability that is notified is reviewed. The new national-level patient dataset will certainly provide what I would call a single point of truth, which has not been there in the past.

My Lords, the report highlights that, for almost two-thirds of these patients, there was no assessment of mental capacity. However, when people are ill and frightened, mental capacity is incredibly important for being able to communicate with people, to make a diagnosis and to monitor a response to treatment. Without communication, of course the outcomes are worse than they might otherwise be. How will the Government improve the assessment of mental capacity across the board and implement the recommendations in the report?

Guidance was issued not many months ago on this point, and I expect to see improvements. The report found that well under 50% of patients or their carers were asked about reasonable adjustments. It is not acceptable, but that is why we have brought in the mental capacity assessment guidance and the reasonable adjustment digital flag. These will make a major difference.

My Lords, in her Answer, the Minister mentioned accountability. Given that the report demonstrated that the gaps are very significant, with something like 50% of hospitals not even being able to record a patient’s learning disability on their digital record, what are the Government doing to track progress on hitting these recommendations, and what are the accountability measures? If trusts do not deliver this quickly, who gets fired?

There are financial sanctions for providers that could be brought into play. On accountability, delivery is monitored through NHS governance and assurance processes. This includes the NHS operating framework, annual assessment of ICB performance, regional oversight and review of local delivery plans.

My Lords, the tragedy is that Lord Rix many years ago pointed out the same problems and no progress has been made. My noble friend is putting faith in ICBs, but she knows that their resources will be reduced in terms of headcount. Going back to the question by the noble Lord, Lord Harper, does she not think that accountability needs to be placed with NHS trusts? They need to be required to establish specialist teams, which we know lead to better outcomes, and have a response in relation to communications. Should we not be putting responsibility where it actually lies, rather than relying on ICBs to commission this?

I have to vary a bit on that point from my noble friend, who I know brings a tremendous interest to this area. It is right that local services are locally provided, but I do not accept the analysis that this is handing it over to an unaccountable local provision. I outlined to the noble Lord, Lord Harper, the specifics of accountability. All the actions that are identified in the inquiry’s report will make major progress. I assure my noble friend that we will keep this continually under review. I am sure that there are always improvements that we can make, and we are committed to doing so.

My Lords, specialist training in the care of people with a learning disability is critical to reducing avoidable mortality. Will the Government fund dedicated senior clinician roles in learning disability medicine across community, acute and mental health settings to provide the leadership that is necessary to improve healthcare outcomes for this population?

There are a number of aspects to that area. We have greatly increased the mandatory training requirement and the numbers who have been trained. The noble Baroness also points to the importance of a multidisciplinary approach. We have seen an increase in nursing staff in that regard. It is a matter for the local provider to decide, but the workforce plan, which we will be seeing soon, will be very helpful in this regard.

My Lords, the report identifies significant variation in the recognition and treatment of acute illness among people with learning disabilities. The Minister talked about guidance, but could she be more specific? What specific help does her department aim to give to those areas, trusts or ICBs deemed to be underperforming? Given the new Prime Minister’s pledge on further devolution, how will the department resolve that tension between local decision-making and central government intervention, especially in underperforming areas?

That is the reason for the accountability measures that I have outlined. I should add that transparency is absolutely key to that. The guidance that we have issued about supporting the identification of people with learning disability is important; we are at that basic level. That is where we have started, but it will push this forward. Further to my answer to the noble Baroness, Lady Finlay, the guidance for acute hospital staff, for example, included standardised mental capacity assessment forms; they were not in place previously. Each ICB is required, via statutory guidance, to have an executive lead on learning disability and autism.

My Lords, every question that has been asked has shown that the system is failing: people are still dying. The key point is that the accountability mechanism is missing or is too diluted to work. Why do the Government allow this system, which kills people early, to continue? What has the Minister not heard in this debate that assures her that the system is working and that it will somehow change for the better? Evidence and history tell us that the system is broken.