People with Learning Disabilities

Earl Howe Excerpts

Thursday 12th June 2014 Lords Chamber

[The Parliamentary Under-Secretary of State, Department of Health (Earl Howe) (Con)]

My Lords, I begin by expressing my gratitude to the noble Baroness, Lady Hollins, for her huge contribution in the fields of learning disability and mental health, her tireless efforts in championing the rights of individuals and families, and for the very real difference the breadth of her work has made to the life chances of so many people.

It is nearly a year since the noble Baroness convened a debate on action to address the health inequalities identified by the government-commissioned Confidential Inquiry into Premature Deaths of People with Learning Disabilities, and I welcome the opportunity to bring those issues to the fore again. Since the government response was published in July last year, we have published our call to action, setting the aspiration to make the UK among the best nation states in Europe at reducing premature and avoidable deaths.

In April, working with partners and stakeholders, we published Living Well for Longer: National Support for Local Action to Reduce Premature Avoidable Mortality, which recognised the need for a targeted approach for people with learning disability. This national partnership, and the focus and momentum it has engendered, creates a vital opportunity to make a difference in our collective fight to reduce avoidable mortality. At the same time, by creating both the evidence base and a system-wide work programme, the confidential inquiry and the Government’s response have provided a powerful tool to turn that opportunity into action.

We have the policy framework in place and have reflected health inequalities across the NHS, public health and adult social care outcomes frameworks. There are specific measures on preventing people with learning disabilities dying prematurely and greater focus on empowering people to have greater choice and control. The mandate to NHS England for 2014-15 allows us to hold the system to account and gives us the basis for measuring progress. Reducing differences in life expectancy and health expectancy are key measures across the system.

NHS England is committed to establishing a learning disability mortality review function by March 2015, as set out in its business plan, Putting Patients First. A project group is overseeing this development, with representation from Mencap, PHE and the Department of Health. I am delighted that the noble Baroness has also been invited to lend her expertise.

The Government’s response to the confidential inquiry included a commitment from NHS England to an assessment of costs and benefits by March 2014. NHS England, together with the inquiry team and other partners, undertook a robust assessment, and resources have been allocated through the priority-setting processes. This is now a commitment in its business plan and strategic objectives, and we all wish to see this work proceeded with rapidly. As regards funding, I am sure that NHS England, in establishing the review function and beyond, will be giving full consideration to funding issues through its business planning and resource allocation processes.

The noble Baroness, Lady Hollins, highlighted the issue of data linkage. Work is under way with NHS England, the Health and Social Care Information Centre and Public Health England to provide standardised mortality data for people with learning disabilities to underpin the NHS outcomes framework and the mortality review function. However, I hope she will appreciate that in taking that work forward, we must also take account of wider cross-system discussions about the collection and sharing of patient data, which will inevitably have implications for this work. Nevertheless we are working closely with partners and will certainly act to secure the prioritisation of this work through all appropriate mechanisms.

The noble Baronesses, Lady Hollins and Lady Andrews, both emphasised the importance of integrated care for those with learning disabilities and getting the whole system engaged. NHS England is looking at ways to establish care co-ordination and risk stratification for people with learning disabilities as normal practice. We will underline the importance of prioritising this with NHS England.

Following the passing of the Children and Families Act, new arrangements will be introduced from September 2014 for joint assessment, planning and commissioning of health, social care and education services for children and young people with special educational needs up to 25 years old. A single education, health and care plan will set out meaningful objectives which will make a difference to the life of the young person, including supporting their transition to adulthood and independent living. The right reverend Prelate stressed the importance of advocacy for people with learning disability. He is right. Several actions arising from the Winterbourne View programme are intended to improve the quality and availability of good advocacy, working with a range of key stakeholders.

As the noble Baroness, Lady Hollins, emphasised, as did the right reverend Prelate, we need a system for identifying those with learning disabilities. The GP register of people with a learning disability from this year onwards is an all-age register, so will include children and young people with a learning disability. GPs are incentivised to construct this register as part of the quality and outcomes framework.

I can tell the noble Lords, Lord Wigley and Lord Hunt, that the NHS standard contract for 2014-15 now includes a requirement for providers to undertake an annual audit of reasonable adjustments. There is already a system within all NHS foundation trusts to provide board-approved risk assessments to Monitor about six specific areas of good-quality care for people with learning disabilities. On the back of this already-established standard, Professor Sir Mike Richards has agreed that four additional questions will be trialled in the inspection of acute hospitals, concerning numbers of people with learning disabilities in hospital, reasonable adjustments, specialist learning disability nurses and care audits. In addition, Professor Steve Field is exploring the data that can be used for intelligent monitoring purposes, in preparation for inspection of primary care providers and how they meet the needs of people with learning disabilities in a primary care setting.

The CQC will, from the autumn, be inspecting services around its preparedness and plans for children and young people with learning disabilities transitioning into adult services. To answer a point raised by the noble Baronesses, Lady Andrews and Lady Warwick, that better transition planning also feeds into the new enhanced services for learning disability annual health checks, which are starting from the age of 14 from this year onwards. They include a requirement for health action plans, and I can tell both noble Baronesses that NHS England is looking at the variation in uptake and the quality of health checks, with the aim of improving both.

I return to the issue of patient identification. In the last year, Public Health England has been involved with the Health and Social Care Information Centre in the development of information standards to improve the identification of people with learning disabilities in healthcare records. Public Health England’s Learning Disabilities Observatory maintains a national register of examples of reasonable adjustments made by hospital and other health service providers to help ensure that people with learning disabilities can benefit as much from available care as other people.

On health checks, as my noble friend Lord Ribeiro mentioned, Public Health England has produced leaflets specifically designed with and for people with learning difficulties, which explain the invitation and screening process for cancer and cervical screening programmes. It also has guidance for professionals on access to screening, and on informed consent and best interests decision-making. NHS England is also looking very carefully at that. In recognition of the very poor uptake of flu immunisation by people with learning disability, this year’s annual flu immunisation letter asks GP practices to prioritise vaccine uptake in people with learning disabilities.

Education and training in this field is vital. My noble friend Lord Ribeiro stressed the importance of compassion and good clinical practice. The noble Baroness, Lady Andrews, referred rightly to a need for cultural change, as did the noble Lord, Lord Rix. Health Education England’s mandate includes an objective to improve the skills and capability of the workforce to respond to the needs of people with learning disabilities and behaviour that challenges. The Department of Health has commissioned a consortium, led by the Royal College of Paediatrics and Child Health, to develop Disability Matters, an e-learning portal for those who work with children, young people and adults with a disability. The Care Quality Commission is raising awareness among its inspectors.

On the issue of the Mental Capacity Act, raised by the noble Lord, Lord Patel of Bradford, the Government’s response to the House of Lords report on the Mental Capacity Act was published this week. It sets out a system-wide programme of action to address low levels of awareness of the Act among professionals. Health Education England is reviewing all education and training programmes to determine compliance with the principles of the Act. It will also look at including MCA compliance in the standard contract with education providers.

The noble Lord, Lord Rix, and the noble Baronesses, Lady Hollins and Lady Andrews, expressed disappointment that the department had not published a one-year-on report. We undertook to keep the Learning Disability Programme Board informed of progress. At a conference organised by the department on 28 March, the confidential inquiry team was able to share information and best practice on national, regional and local work to address the recommendations. That was followed by a meeting with members of the Learning Disability Programme Board in April.

We now need to step up the pace and make a concerted national effort to see more equitable access and outcomes for people with learning disabilities. A report setting out progress to date will be presented to the Learning Disability Programme Board in July, a year on from the Government’s response to the confidential inquiry. That will be published online.

The noble Baroness, Lady Hollins, asked whether we would embed the learning from the confidential inquiry into other policies. Most certainly yes: we have already committed to link the learning recommendations from the inquiry to other policies and programmes—for example, the Winterbourne View programme, the Mental Capacity Act and, indeed, end of life care.

The noble Baroness, Lady Warwick, expressed her concern over what she saw as the Government’s lack of action. I hope I have demonstrated that there has been extensive action, but of course there is more to do. I believe that collaboration nationally and locally on this challenging issue will give us the best chance of delivering equitable health outcomes across our nation. I would say to the noble Lords, Lord Adebowale and Lord Hunt, that the Government, as steward of the health and care system, are taking responsibility for delivering their commitments in response to the confidential inquiry’s recommendations. In doing so, we are ensuring that all key delivery partners across the health and care system play their rightful part as well.

House adjourned at 6.44 pm.