Disabled People

Baroness Thornton Excerpts

Thursday 9th May 2019 Lords Chamber

[Baroness Thornton (Lab)]

My Lords, I congratulate the noble Lord, Lord Borwick, on initiating this fascinating, well-informed debate. I declare an interest as a member of a clinical commissioning group.

I appreciate that the debate is fundamentally optimistic about the future for people with disabilities. It celebrates the progress made and expresses the hope that science, medicine, technology and societal enlightenment hold for curing, preventing and alleviating many conditions, as well as creating the living conditions we would want for ourselves and all members of society. Every day we hear about life-saving, gene-altering drugs and treatments, which are exciting and bring hope to many people and their families. Indeed, the planning, environmental and other changes that seem likely in the next 50 years were eloquently mentioned by the noble Lord, Lord Borwick.

In these remarks, I of course want to speak about the future and the hope that it holds for disabilities of all kinds. However, we need to start by being truthful about the situation currently facing millions of our fellow citizens with disabilities in this, the fifth-largest economy in the world and a rich first-world country. We must do so for two reasons. First, it is important to hold this Government to account for the poverty and reduced life chances that their policies over many years have visited on the disabled. Secondly, what will the Government do to ensure that disabled people are treated with equality and have equal access to the advances in medicine and technology we have spoken about?

There are 13.9 million disabled people in the UK. Some 8% of all children are disabled, as are 19% of working-age adults and 45% of pension-age adults. In 2018 the Social Metrics Commission published a report which found that disabled people are much more likely to be living in poverty than the population as a whole. Nearly half of the 14.2 million people in poverty are living in families with a disabled person—6.9 million people, equal to 48% of those in poverty. The SMC report recognises the inescapable costs of disability, accounting for them alongside the value of disability benefits to reflect a lived experience of people with a disability.

The facts of life of living with a disability in the UK are stark and, in my view, shameful. It is almost a perfect storm of failed public policy, which is to put it much less tactfully than did the noble Baroness, Lady Campbell, who called it an adverse reversal of progress. Since 2010, £7 billion has been taken out of adult social care budgets as a result of reduced funding. Some 80% of local authorities say that there is not enough provision of social care services and we have a social care system in crisis. We know that the NHS faces huge challenges in terms of staffing because that has been headline news over the past few days. We have immediate shortages of GPs and nurses, with a knock-on effect for those who require continuing support and healthcare. We have not had a social care Green Paper for more than two years, as many noble Lords have said. The Institute for Government has said:

“The green paper has become an object of ridicule, but the Government’s constant foot-dragging is no laughing matter … Delays to the green paper make it impossible for councils to plan ahead”.


What is to be done? The Labour Party’s policy is a social model of disability; while people may have a condition or an impairment, they are disabled by society. Rather than adopting such a model, and through the way they have handled support for disabled people, the Government have not significantly challenged the stigmatisation that often goes with a disability. Some 40% of our disabled fellow citizens do not feel involved in or valued by our society. Indeed, my noble friend Lord Faulkner eloquently described some of the abuse suffered by disabled people.

According to the OBR’s January 2018 report, almost 1 million disabled people will be made thousands of pounds worse off as a result of universal credit, and the basic disabled child addition in universal credit is worth less than half of the equivalent in child tax credit. This could affect around 100,000 disabled children, who may receive up to £32 a week less than they would under child tax credit. It is therefore not surprising that a piece of research by the think tank Demos says that the Department for Work and Pensions should be stripped of its responsibility for providing social security benefits and job support to ill and disabled people, because of a series of botched reforms to disability benefits and the imposition of a brutal sanctions regime that has left many vulnerable claimants stressed and in poverty. The call comes amid concern over what critics say is the DWP’s punitive and insensitive benefits policy and contemptuous treatment of some claimants. Last year, the chair of the charity Scope, the former top civil servant Andrew McDonald, who receives PIP because he has Parkinson’s and terminal cancer, called the disability benefits system a “hostile environment”. The United Nations report on extreme poverty described this Government’s cuts as “callous”, “punitive” and “mean-spirited”. The Equality and Human Rights Commission has said that one in five disabled people suffers an erosion of their rights because they are disabled and, despite government pledges to improve conditions for the nearly 14 million disabled Britons, their situation is getting worse. They find it more and more difficult to live independently, to be included and to participate in their communities on an equal basis.

I agree completely with the aspirations rightly mentioned by the noble Lord, Lord Holmes, and indeed those described by many noble Lords, but we are not there yet. I therefore encourage the Government to hold a mirror up to the issues facing disabled people in the UK and make that their starting point for reform. As noble Lords have said, the Government must talk to disabled people about what they think and need for the future. There is no doubt about the huge change in society’s attitude towards disabled people, which is precious and needs to be built on.

I am going to dwell on science and technology in medicine. It is wonderful that our world-class, cutting-edge science research has, for example, produced a drug such as Orkambi, which targets the underlying causes of cystic fibrosis. It targets a mutation that around 50% of people with CF have. It is licensed for use in the UK, but NICE has not recommended it for use in the NHS. It is available only rarely on compassionate grounds. There are drugs coming down the pipeline that could cover 90% of the CF community, and we have to find a way to ensure that these life-changing treatments are available to everyone who suffers from such conditions. The report of the Health and Social Care Select Committee is now out and makes that recommendation. I should like to know what the Government’s response is going to be. Muscular Dystrophy UK is running a campaign known as FastTrack to identify and remove any barriers to accessing life-changing treatments. The charity says that this is an “encouraging time”, with many clinical trials in development and treatments emerging. However, existing drugs have been subject to lengthy assessment processes which cost individuals time that cannot be recovered. That is because, once lost, muscle mass and strength cannot be regained. The noble Lord, Lord Lingfield, also talked very adequately about the issues around stroke.

An increasing number of drugs and treatments are becoming available to treat a whole range of conditions mentioned in the debate. The problem we face is that it takes too long for them to reach the people who need them, and the deals being made are not helping. In the past two days we have read the amazing story of a young woman who has received the very first treatment for cystic fibrosis. She had a lung transplant that went well, but then developed infections which could not be treated because they were impervious to the antibiotics available in the hospital. The University of Pittsburgh has been enlisting students to collate the world’s largest collection of bacteriophages, which are viruses that prey solely on bacteria. Three have been identified so far which have been used to treat this young woman for the past six months. She will recover.

This is an important story on any levels. The first is how to replicate this science to get it into common use. The second is how to make it available at the point of need, because I suspect that it is expensive. Finally, it feeds into the antimicrobial challenges that we face in our NHS here and among health services across the world. This is something that the Government need to address. NICE needs to increase its capacity and not have its funding cut as it has been, so that it is forced to charge for its appraisals—a false economy if ever I saw one. NHS England needs to up its game by holding earlier pricing discussions with pharma, reaching flexible treatment access arrangements, meeting additional costs for early access schemes and urgently reviewing individual funding requests. The noble Baroness, Lady Meacher, made a very good point about unacceptable delays. The noble Baroness, Lady Campbell, rightly mentioned the importance of the pioneering work of your Lordships’ House, and I am proud to have been on the receiving end of much of her determination in this matter. Does the Minister agree that we are in a fast-moving world, so the Government have to respond appropriately?