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Learning Disabilities: Premature Deaths

Volume 755: debated on Wednesday 30 July 2014


Asked by

To ask Her Majesty’s Government what progress has been made with regard to the recommendations of the Confidential Inquiry into the premature deaths of people with learning disabilities in the year since their response to the Confidential Inquiry.

My Lords, actions are under way with a range of national delivery partners and at local level in response to the inquiry’s recommendations, including improvements in the identification of people with a learning disability, the auditing of reasonable adjustments, and the provision of health checks. Progress is monitored through the Learning Disability Programme Board.

My Lords, I welcome the commitment in the NHS business plan and the Department of Health mandate to try to reduce premature mortality in people with learning disabilities, and in particular to establish a national mortality review function, but until the necessary data linkages have been made, the review cannot begin. What action is being taken to ensure that the Health and Social Care Information Centre will prioritise the collection of the data required, such as identifying people with learning disabilities and their causes of death, so that the review can indeed begin?

My Lords, the specification for the mortality review function is under development, and we all wish to see that work proceeded with rapidly. Data to support the function will be needed from both national and local sources. Work is under way with NHS England, the Health & Social Care Information Centre and Public Health England to derive data to underpin both the mortality review function and the NHS Outcomes Framework. However, it is important that this should take full account of wider developments in the collection and sharing of patient data, and this will inevitably impact on the pace of progress. As I am sure the noble Baroness recognises, it is vital that we get that right.

My Lords, my noble friend will undoubtedly remember that we had a discussion in this House on the problems of the deaf in trying to access healthcare, and how that leads to other problems. Will there be a pan-disability look into this problem? It is clear that those who have problems communicating in forms of consultation with the NHS get bad results from it.

My Lords, many of the issues that apply to those with learning disabilities also apply to others with different disabilities, and the work currently going on in the context of the noble Baroness’s Question will, I think, have a beneficial impact across the piece.

Does the Minister accept that a number of the points arising out of the confidential inquiry were touched upon by the earlier DRC report published more than six years ago, Equal Treatment: Closing the Gap, and that progress since then has been patchy? In the light of that, will he give a commitment that there will be an annual review of progress made on the confidential inquiry recommendations and a report to Parliament?

My Lords, I can assure the noble Lord that there is currently a whole-system response to the recommendations in the review. As I said earlier, this is a response from NHS England, Public Health England, local organisations and, indeed, Ministers overseeing the Learning Disability Programme Board. I shall take away the noble Lord’s question about a formal annual review, consider it carefully, and write to him.

My Lords, does the noble Earl recognise that the confidential inquiry showed that there are great failings in the health treatment given to many people with learning disabilities, which probably contributes to their very poor life expectancy? He will be aware that my own former trust, Heart of England, appointed specialist liaison nurses who could help people with learning disabilities find a pathway through their healthcare. Would he advise other NHS trusts to follow that example?

My Lords, the noble Lord makes a good point. Following the recommendations of the UK review of learning disabilities nursing, we have set up an independent collaborative to address that workforce’s needs. We are also working with Health Education England’s 13 local education training boards to develop greater links with the independent and voluntary sector which will help with workforce planning. This year Health Education England increased its national commissions for student learning disability nurses by 4.5%. We are working on a number of initiatives to raise the profile of learning disabilities nursing and promote the profession as an attractive career choice.

The report identifies 37% of deaths that could have been prevented. People with learning disabilities and those on the autistic spectrum, some of whom are included in the report, experience communication problems at hospital level. Will my noble friend please put government force behind the issuing of hospital passports for people with learning disabilities and those with autism? The autism hospital passport was launched two weeks ago and is on the NAS website. However, these very important documents can help to prevent death only if clinicians and hospital staff read them, take note of them and act on them.

I take my noble friend’s point. The specific needs of people with learning disabilities are being considered as part of the overall work programme to provide people with online access to their GP practice and GP-held e-record. That is being done in the wider context of the development of a fully comprehensive patient-held record. NHS England plans to hold a meeting later this year to look at developing a national standard for a hospital passport. This will be a patient-held document that will detail key information to be shared with any contact in the NHS.

My Lords, what is the Minister doing to ensure that comprehensive community learning disability teams are available in all areas and that GPs are proactively referring patients with a learning disability to these vital services?

My Lords, the learning disability teams are of crucial importance in ensuring that those with a learning disability are able to access the services that they need. I have a long list of things that are relevant to that subject and I am happy to write to the noble Baroness with that information.