Disability: Premature Deaths

Baroness Walmsley Excerpts

Monday 17th October 2016 Lords Chamber

[Baroness Walmsley (LD)]

My Lords, like the noble Baroness, Lady Hollins, all of us on these Benches very much miss the late Lord Rix. We miss his expertise on subjects such as the one we are talking about tonight; we miss the inspiration that he gave all of us because of that work; and we miss his wonderful sense of humour. Therefore, I thank the noble Baroness, Lady Hollins, for what she said about him. Of course, we all agree with her.

I also wish to thank the noble Baroness for initiating this debate. She has been consistent in her scrutiny of this issue, having raised the matter every year since the Confidential Inquiry into Premature Deaths of People with Learning Disabilities reported in 2013. That this is necessary demonstrates the enormity of the challenge of ensuring that people with a learning disability have equal access to healthcare that caters to their particular needs and ensures that the reasonable adjustments that should be made for them are made.

I congratulate the noble Baroness, Lady Fall, on her excellent maiden speech and particularly on her use of the word “equality”. As she rightly said, “equal” does not mean the same. Equality of opportunity to enjoy good health and good treatment is what we should aim for. Progress has been too slow, and steady headway is now required from the Minister and her Government.

I would like to raise, in particular, the need to reverse the trend of falling numbers of learning disability nurses. The Royal College of Nursing’s Connect for Change report claims that the total number of learning disability nurses in the NHS has fallen by nearly a third since 2010—a reduction of 1,726. An equally worrying trend is that more senior nurses have been lost in this discipline than any other, with a 40% reduction. We need nurses in all disciplines to be seasoned and expert, particularly in this discipline. The current Government have presided over a reduction in both expertise and quantity. Can the Minister say how her department is planning to correct that?

Learning disability nurses provide much-needed advocacy and support and are a key tie-in to social care. They speak out in the interests of people with a learning disability, provide assistance to carers and family members, and give much-needed advice and support to doctors. The case studies in the report, which I found extremely moving, show clearly what happens when this help is not available.

It cannot be right that with 1.4 million people with a learning disability, more of whom are now diagnosed earlier in life, live longer and possess complex needs, support available only five or six years ago is now no longer available. This fall in the number of professionals also means that people with a learning disability face a lottery as to hospital coverage.

In 2014, the Royal Mencap Society found that few hospitals have full-time cover and some none at all. This sometimes means that people with learning disabilities are unable to make their pain known to those who are treating them. They may not have a traffic light card or a hospital passport-type document, which have proved so useful to many—there are several examples of that in the CIPOLD report—they often become confused in a strange environment and among people who are not known to them; their care home may not be able to send somebody with them because of pressures faced. That is why we need the specialist nurses.

Although learning disability nurses are important, so too, as several noble Lords have mentioned, is the training of other health and care staff. We cannot and should not leave everything up to learning disability nurses, not least because of their dwindling numbers. All doctors, nurses and other care professionals need an understanding of learning disability and conditions such as autism and mental health problems, which might also be a barrier to communication. Understanding how to communicate in both directions is vital to ensuring that patients understand procedures, diagnosis and, importantly, what to do following operations and consultations about their own care and medicines. I am heartened to hear about the good work going on at St George’s, and look forward to hearing how the Government and NHS England will spread and promote that good practice.

People with a learning disability need more support and a proactive policy to ensure that they lead healthy lives. Annual health checks can uncover underlying conditions, yet, as we have heard, less than half of people with a learning disability receive them. Accessible information can empower people with a learning disability to take control of their health; we need that, sometimes with pictures, to help the understanding. The NHS accessible information standard launched this summer could not be timelier, and I wish it well.

Urgent action is needed to ensure that no more people with a learning disability die due to avoidable circumstances. The noble Baroness, Lady Hollins, has been a champion in standing up for people with a learning disability and for access to healthcare. I hope to hear much better news the next time that she raises this issue.

--- Later in debate ---

[Baroness Chisholm of Owlpen (Con)]

My Lords, I congratulate the noble Baroness, Lady Hollins, on securing this debate on an issue of great importance that is rightly of concern to your Lordships and indeed to the Government. I begin by paying tribute to the noble Baroness for her unfailing commitment to highlighting the inequalities, experiences and poor outcomes that people with learning disabilities and their families have faced for many years. I echo her and other noble Lords’ tributes to Lord Rix, who we are certainly going to miss enormously.

I also take this opportunity to congratulate my noble friend Lady Fall on an excellent maiden speech. My noble friend will be a great addition to this House and I greatly look forward to her contributions in the future. Also, let me thank all noble Lords for their contributions this evening.

We know that there are people young and old who die from what are often referred to as avoidable and premature deaths—which, I think we would all agree, need not happen if care, safety and the way in which people are treated were consistently good across the whole of the healthcare system. The Government are clear that the lives of people of all ages with learning disabilities matter. We are working with partner organisations, professionals and people with learning disabilities and their families to respond to issues that are important to, and have a big impact on, people’s lives.

As my noble friend Lady Rawlings mentioned in her speech, we know that people with learning disabilities experience significantly worse outcomes than the rest of the population. Our activity therefore extends beyond health and care and must also encompass the education of healthcare professionals, employment and housing. To this end, NHS England has a wide-ranging programme of work on learning disability designed to transform care and improve outcomes, driving up the quality of clinical and nursing care and reducing health inequalities. The NHS Five Year Forward View highlighted the need to improve learning disability services, with the NHS driving improvements in culture and behaviours towards people with learning disabilities.

The NHS published shared planning guidance in September with the aim of improving learning disability services, including reducing premature mortality, one of only nine “must dos” in the guidance. As my noble friend Lady Rawlings also mentioned in her speech, the clinical commissioning group improvement and assessment framework was launched in March. This Ofsted-style assessment will allow us to see how clinical commissioning groups are performing in key areas. It includes two indicators on learning disability: reliance on specialist in-patient care and the proportion of people on GP learning disability registers receiving an annual health check.

The noble Lord, Lord Hunt, and the noble Baroness, Lady Tyler, both spoke about NHS foundation trusts, and my goodness there are lessons to be learned. The Government have asked whether the issues raised in the Mazars report might be found in other providers across the country. The Care Quality Commission’s review into the investigation of deaths includes a sample of all types of NHS trusts in different parts of the country and will assess whether opportunities for the prevention of death have been missed—for example, by late diagnosis or physical healthcare problems. We expect the Care Quality Commission to publish its findings in December.

The noble Baronesses, Lady Hollins and Lady Tyler, asked what the Government were doing to provide full information on an ongoing basis on trends in the age of and causes of death of those with learning disabilities, and how those trends can be monitored. In answer, I can say that the Department of Health is working with Public Health England and NHS Digital to address the lack of reliable data, which are so important to ensuring that the right decisions can be made by healthcare professionals. A number of approaches are being considered, but the lack of progress has been frustrating. Noble Lords will be aware, however, of the wider issues surrounding the safe and secure use of health and care information, and here I cite the work undertaken by the National Data Guardian for Health and Care, Dame Fiona Caldicott, to ensure that the public can make informed choices about how their data are used. The Department of Health ran a public consultation on those proposals and is currently analysing the responses received. In addition, the department sponsored a study in this area undertaken by Public Health England, and the findings were published by the Journal of Intellectual Disability Research in July. They indicate the extent of premature mortality and its major causes.

As noble Lords have mentioned, people with learning disabilities have a life expectancy on average approximately 20 years less than other people. Public Health England also publishes a digest of the most up-to-date mortality statistics in People with Learning Disabilities in England. The 2016 edition of this will appear later this year.

The noble Baronesses, Lady Hollins and Lady Rawlings, asked whether it was time to mandate reviews into the deaths of all people with learning disabilities. Several other noble Lords mentioned this, too. In March 2015, NHS England commissioned the learning disability mortality review programme, which aims to support local and regional areas conduct reviews of deaths of people with learning disabilities and implement any recommendations and plans of action. Every NHS region is testing the review process and by March 2019 we expect every area to have established a mortality review process.

On the important matter of drugs, excessive use of psychotropic medication is known to be a specific factor in the premature death of people with a learning disability. Several royal colleges have signed a pledge to stop overmedication and have developed plans to deliver on the pledge, including issuing guidance for pre-registration nurses and psychiatrists; producing accessible information on medication for people and their families; and publishing guidance for prescribers. NHS England will also look regularly at primary-care prescribing of psychotropic drugs to monitor progress nationally.

As I mentioned earlier, the NHS mandate includes a requirement to reduce health inequalities for people with a learning disability. The noble Baronesses, Lady Redfern and Lady Hollins, mentioned annual health checks, as did the noble Baroness, Lady Walmsley. A key objective of this work is to increase the number of people on primary care registers and to ensure that as many of those people as possible get an annual health check. The ambition is for 75% of people on GP registers to receive an annual health check by 2020. Specific work under way includes: standardised letters to improve advice and guidance on health checks; pre-health check questionnaires; health check templates linked to people’s care records; and health action planning, including a focus on key issues that need to be followed up.

NHS England is working to improve how people with a learning disability access health services. This includes: developing care pathways for health conditions affecting people with a learning disability such as diabetes, epilepsy, heart disease and dysphagia; improving patient experience and outcomes; and sharing good practice to reduce variation in quality and make reasonable adjustments to services.

Education is hugely important and was mentioned by virtually every noble Lord. We have recognised that there needs to be a significant improvement in education of healthcare professionals. Health Education England, together with Skills for Health and Skills for Care, launched in July 2016 the learning disabilities core skills education and training framework, which was mentioned by several noble Lords. The framework provides the knowledge and skills needed for those delivering training to health and care professionals.

The noble Lord, Lord Addington, and the noble Baroness, Lady Hollins, mentioned the difficulties in communicating. Some universities such as St George’s, with the help of the noble Baroness, Lady Hollins, lead the way. Here, students receive training from training advisers who themselves have learning disabilities.

We are also taking steps to help people understand and access the right care and support, including by trialling the idea of “named social workers”, and, as part of the transforming care programme, establishing the role of “care and support navigators”. These will also support the aims of integrated and personalised care.

The provision of accessible information and people’s ability to communicate with staff have a key impact on their care, experiences and outcomes. In July 2015, NHS England published the accessible information standard for the NHS and social care services to help organisations identify and meet an individual’s communication and support needs.

As the noble Lord, Lord Addington, and the noble Baroness, Lady Fall, mentioned—the noble Baroness, Lady Hollins, mentioned it in the debate last Thursday on libraries and again tonight—the provision of books beyond words for those who have visual learning but difficulty with words can make a real difference. It is important that every possible healthcare professional has this at their side whenever they are dealing with people with learning disabilities.

I want to make sure that I cover all the questions, because, as always, I am running out of time.

The noble Baroness, Lady Hollins, asked what the Government are doing to improve our knowledge and understanding of the needs of this vulnerable group. GPs, under the quality and outcomes framework, have to maintain a register of their patients who have learning disabilities. The new Care Quality Commission arrangements for inspections for acute hospitals explicitly examine how patients with particular needs, such as learning disabilities or dementia, are identified. As the noble Baroness, Lady Hollins, also mentioned, the Government will regularly inform Parliament of the progress that has been made. I think the noble Baroness, Lady Tyler, also mentioned this. Public Health England’s Learning Disabilities Observatory team review each year and are covered in local and health authority joint strategic needs assessments. This team will continue, funding will continue for this team and the Secretary of State for Health reports annually to Parliament his assessment of NHS England’s progress.

The noble Baronesses, Lady Tyler and Lady Hollins, also wanted to know whether the Government can give a clear message to local authorities and special care agencies about their expectations that staff will be released to contribute to lead reviews of deaths. We agree that there should be the local capacity to undertake high-quality reviews which will yield the best possible learning. However, we have no plans to legislate to make such participation a statutory duty. There is already a strong expectation in the CQC guidelines that providers will participate in relevant clinical audits. Additionally, there is participation in the NHS England-commissioned audit and outcome review programme, which the Learning Disabilities Mortality Review programme is carrying on.

I will have to write to the noble Lord, Lord Hunt, on the 18 recommendations, if that is all right, and on the funding attitudes.

There is work in progress which will, in time, have a positive impact on the safety and quality of care.

[Baroness Walmsley]

I am sorry to interrupt, but when she is writing her letters will the Minister please also reply to my questions about learning disability nurses?

[Baroness Chisholm of Owlpen]

Yes. I am so sorry—I had the answer and I will make sure that I get it to you.

We give thanks to the noble Baroness, Lady Hollins, and people like her who keep pushing the barriers facing this vulnerable group. The Government are focused on making changes happen, stopping variation in care and championing those with learning disabilities being able to live full and happy lives, knowing that support is there when needed. Once again, I thank all noble Lords for taking part tonight. I am sorry that I have not had time to answer all the questions, but I will make sure that the letters get to noble Lords.