World Down Syndrome Day

Liz Kendall Excerpts

Thursday 23rd March 2023 Commons Chamber

[Liz Kendall (Leicester West) (Lab)]

I echo other Members in congratulating the right hon. Member for North Somerset (Dr Fox) on securing this important debate. We all know what a passionate and—most importantly—effective campaigner he has been in supporting people with Down syndrome and their families. His Down Syndrome Act, which Opposition Members were proud to support, represents an important opportunity for us to make progress on delivering the support that people with Down syndrome deserve, so that they can lead as full and equal a life as everyone else.

Let me say as an aside that I think what the right hon. Gentleman is trying to do has important implications for wider public sector reform. There are many issues and problems that people have talked about for years; the question is, how do we make change? The right hon. Gentleman’s mechanism in this instance is to use a specific Act providing for named individuals who are held accountable, and for guidance that actually secures change. However, there are other methods of securing changes in public services—for instance, through legal rights—and I am a strong champion of direct payments and personal budgets, which give people and their families the power to change those services. We need to focus on making a difference and putting the users of services and their families at the heart of the system, making them equal partners in care. We will never get healthcare, education and work support right unless we do it in partnership with people.

I am a long-standing champion of the vision pioneered by the group Social Care Future, which consists of people who use services and their families: that we all want to live in the place we call home with the people and things we love, in communities where we look out for one another and where we can contribute, doing the things that matter the most to us—not what somebody else tells us we want to do or should do, but what we ourselves want to do. That is the vision that Opposition Members are championing. In the 21st century, and in what, despite all our problems, is still one of the richest countries in the world, it should not be seen as extraordinary, but the truth is, I am afraid, that for too many of the 47,000 people in the UK living with Down syndrome, it remains far from reality.

Members have rightly spoken of the progress that has been made, but I think it is also important to use this debate to demonstrate how much further there is to go. The first issue I want to raise is that of health and health inequalities, to which many Members have referred. We know that people with Down syndrome are more likely to experience problems with their hearts, bowels, hearing and vision, and have an increased risk of infections. I think it disgraceful that so often the outcomes are so poor for people with Down syndrome because of what is known as diagnostic overshadowing, when symptoms are ignored and put down to Down syndrome rather than being diagnosed properly and addressed.

There are two issues on which I think we should focus. The first is the need to ensure that children with Down syndrome have the regular check-ups they need with paediatricians and GPs. We know that too many families find those services too hard to access, and the current number of vacancies in the NHS—133,000—as well as all the other problems that people are experiencing when trying to see GPs and other doctors are having an impact on that. When she responds to the debate, will the Minister tell us when we will finally see the Government’s workforce plan for the NHS? May I also cheekily ask her once again whether she will adopt Labour’s plan to bring about the biggest expansion of the NHS workforce in its history, which we would pay for by scrapping the non-dom tax status? Members will understand that I want to put forward practical solutions today and to be realistic about the challenges, and that is what I intend to do.

[Dr Fox]

Does the hon. Lady accept that it is a question of not just the size of the workforce but their understanding of the problems? If in health, as in education and social care, the professionals are not aware of the difficulties faced by the population with Down syndrome, no number of extra professionals or services will make a real difference.

[Liz Kendall]

The right hon. Gentleman must have read the next line in my speech. Of course, it is not only an issue of staff shortages and vacancies. I think that the real issue, which the right hon. Gentleman mentioned earlier, is training. If people are not trained to understand an issue and to understand its manifestations, they will not be able to put it right. In some other areas, I have seen medical schools and universities pioneering new forms of training, in which those who have a condition and their families become part of the training module to explain what the implications are. I hope that the Minister will tell us what action the Government are taking in this regard, and whether the guidance that will be issued will involve changes within medical schools or for nurses and other healthcare professionals.

The second area in which progress is needed is social care. It is, I believe, the biggest area in which the right support for people with Down syndrome is too often lacking. Whatever Conservative Members may say, I think it is important to understand the context in which the Down Syndrome Act will be working, and to take into account the difficult situation relating to social care. Just last week, research from the learning disability charity HfT revealed that nearly half the social care providers in England have been forced to close part of their organisations or hand back contracts to councils as a result of cost pressures in the last year. More than half a million people are awaiting a social care assessment, a review, or the start of a service or direct payment, and a survey conducted by the Down’s Syndrome Association found that 43% of family carers said their adult child was in need of an assessment, with some waiting as long as two years for that basic service.

What all this means, of course, is that families tend to be left to pick up the slack, often having to leave their own jobs or reduce their hours because they cannot obtain the help that they need to look after their loved ones. The fact that there are 165,000 vacancies in the social care workforce is having an impact on the support that is available to families with Down syndrome. We need to address both the issue of the care workforce and wider reforms.

Last week, the Health Service Journal reported that there are due to be cuts in the money announced for social care reform in the 2021 White Paper. A sum of £500 million was set aside to improve the training and career progression of the care workforce, but the Health Service Journal said that that is going to be cut by half. It also said that the £300 million to better integrate housing, health and care is set to be cut, with cuts to the budgets for unpaid carers and the use of technology.

This is really important, because unless we join up services and support, people with Down syndrome will not be able to live the lives they choose. The issue of housing is critical. Just 28% of people with learning disabilities live in supported housing, yet we know that 70% of people with a learning disability want to change their current housing arrangements to give them greater independence. Will the Minister confirm whether those reports are true? Are the Government going to cut £250 million for improving the training of the social care workforce and £300 million from the budget to better integrate health, care and housing? [Interruption.] It is not a disrespectful question; it is a question that has a direct impact on the lives—

[The Parliamentary Under-Secretary of State for Health and Social Care (Maria Caulfield)]

I said it was disappointing.

[Liz Kendall]

It is not disappointing; it is my job to hold the Government to account. I would like the Minister to answer that question.

The hon. Member for Southend West (Anna Firth) mentioned help to work, which I am passionate about. Work gives purpose, independence and dignity, but only 5.5% of adults with a learning disability in England were in paid employment as of 2020, yet 65% of people with learning disabilities say they want to go out and work. The hon. Member asked about what was happening in her constituency. I recently visited the Leicester Royal Infirmary, which is doing pioneering work with Ellesmere College, a college for students with special educational needs, to give them the skills and experience they need to get to work, with pioneering apprenticeships. I visited a young woman who was working in the hospital café. I asked her what she thought, and she said that her ambition now was to set up her own café and employ others. I think that shows that if people are given the chance and the support, real progress can be made.

The Down Syndrome Act presents a real opportunity for change. It creates a duty on the Secretary of State to issue guidance to relevant authorities on how to meet the specific needs of people with Down syndrome. That will cover many of the issues I have outlined, and I hope the Minister will update us on when it will start to make an impact on the ground. I understand that the call for evidence on the Act closed in November. When will we see the Government’s response? We need to act quickly to make real progress to transform the lives of people with Down syndrome and ensure they can live the life they choose.

I would argue that wider action is needed to support the NHS and social care so that we have the investment and reform we need to improve lives, but I hope the Minister will address in detail my questions about the reports. I understand that the Government will produce an update on social care, possibly next week. Will the Minister answer my question and say whether the funds the Government promised will be available?