Dementia Action Week

Liz Kendall Excerpts

Thursday 27th May 2021 Commons Chamber

[Liz Kendall (Leicester West) (Lab)]

Dementia affects the lives of hundreds of thousands of people in this country: not only the 850,000 people who currently have the condition, but thousands more of their family and friends, as I am sure many of us in this House know. It is the leading cause of death in England, and the only condition in the top 10 causes of death for which there is currently no known treatment or cure. Our ageing population means that the number of people with dementia is set to increase to 2 million by 2050, with the cost of caring for dementia more than doubling to almost £60 billion a year.

Over the past 15 months, people with dementia and their families have suffered perhaps more than anyone else because of covid-19. A quarter of all deaths from this awful virus have been among those with dementia, predominantly because of the tragedy in our care homes. Tens of thousands more have seen their condition deteriorate, and families have been pushed to breaking point and banned for more than a year from seeing their loved ones in care homes. Those who look after a relative in their own home have been providing even more care than usual.

Dealing with this pandemic was always going to be extremely difficult, but the truth is that there has been a higher proportion of deaths in care homes in England than in almost any other country in the developed world. Between 17 March and 15 April last year, 25,000 people were discharged from hospital to care homes without a covid-19 test, despite clear evidence of the virus sweeping through care homes in Italy, America and France.

Care providers and trade unions warned the Government about the lack of testing and PPE. The Prime Minister was personally warned about those issues by my hon. Friend the Member for Hove (Peter Kyle) in Prime Minister’s questions on 25 March. I myself wrote to the Health Secretary about these issues on 8 April.

Despite all that, the official guidance on testing before discharge to care homes did not change until 16 April last year, almost a month after we all went into national lockdown. We do not need Mr Cummings to tell us that the rhetoric about putting a protective shield around care homes was complete nonsense; the evidence is there for all to see. The reason this matters—the reason the truth and the facts matter—is that we owe it to people who have lost their loved ones with dementia, to those who are still being prevented from having normal visits to care homes and to all the staff in care homes who have been to hell and back. We have to learn the lessons from what has happened to make sure these terrible mistakes never happen again.

If we want to build a better country as we emerge from covid-19 and meet the challenges of this century of ageing, then the needs of people with dementia must move to the top of the agenda. That starts with dementia research, because ultimately our goal must be to prevent, treat and ultimately cure this often heartbreaking condition. The rapid development of treatments and vaccines for covid-19 has shown us the amazing things our scientists can achieve when they are backed by political will and underpinned with the right resources and partnerships. Ministers now need to apply the same approach to dementia research.

In their 2019 manifesto, the Government promised to double funding for dementia research and speed up progress in clinical trials. When will they deliver on that commitment? Over the past decade, huge progress has been made in imaging, artificial intelligence, genetics and drug development, and that has brought us to a tipping point in dementia research, which the UK is extremely well placed to capitalise on because of our diverse academic research base, funded by the public, private and charitable sectors, and because of the strong foundations in clinical research provided by the NHS. Ministers need to seize this opportunity to give dementia research a greater priority and turn the UK into a world leader in clinical trials, so that patients here can be among the first to benefit from improved treatments.

The second issue Ministers need to grasp is transforming support for families. That should happen across the entire health and care system, but perhaps nowhere more so than in dementia care. Dementia gradually erodes your ability to think, communicate and even move. It destroys your memory, gradually taking away what makes you, you. That is what makes it so very painful for the people who live with dementia and the people who love them.

When someone has dementia or Alzheimer’s, their family is their memory. No matter how amazing NHS or care workers are, they cannot know the foods the person likes, the films they used to watch or the songs they like to sing. That is one of the reasons why so many people in care homes have gone downhill so fast without regular family visits. The bottom line is that we cannot provide good-quality dementia care without putting families centre stage.

Our health and care services need to do far more to identify people who help care for someone with dementia, get them better information and advice and make sure that services are far more joined up, so that people do not have to tell their story to lots of different people in lots of different parts of the system. The Government need to properly fund breaks for family carers, so that they can put their own needs first, at least for a while, and fund other initiatives, such as the amazing support group for carers run by the Alzheimer’s Society in Sefton, who I met recently. They are just absolutely phenomenal and a lovely bunch of people. I believe that Ministers need to change the law to enshrine the rights of care home residents to have family visits, so that the terrible situation facing hundreds of thousands of families over the past 15 months never happens again.

The final point I want to make is on the urgent need for the Government to make good on their promises to reform social care, because while dementia is not yet curable, our broken care system definitely is. For all that the Minister has said, the truth is that when the virus struck, our care system was far weaker than it ever should have been after a decade of cuts, taking £8 billion out of the care system at a time of growing demand. Two years ago, the Prime Minister stood on the steps of Downing Street and promised to fix the crisis in social care

“with a plan we have prepared”,

yet still these reforms are nowhere to be seen. If there is one thing, just one thing, that comes out of this awful pandemic, it must be a long-term plan that gives social care the priority it needs and deserves, and secures a sustainable funding base for the future.

Labour is calling for a 10-year plan of investment and reform to transform support for older and disabled people, including those with dementia, as part of a much wider ambition to make Britain the best country in which to grow old. In the century of ageing, we understand that social care is as much a part of our infrastructure as the roads and railways. If we neglect our country’s physical infrastructure, we get roads full of potholes and buckling bridges, which prevent our economy from functioning properly. The same is true if we fail to invest in our social infrastructure. Without a properly paid and trained care workforce, vacancy and turnover rates soar, fewer people get the support they need and families end up taking the strain.

President Biden gets that, which is why he has made home care a central plank of his post-pandemic infrastructure plan. Britain deserves that level of ambition too. In the century of ageing, everyone should look forward to getting older with confidence, not fear. Labour Members stand ready to play our part in making that happen, but it is time for the Government to act.

--- Later in debate ---

[Liz Kendall]

It has been an honour to take part in this debate. It is all too rare for Members to talk so much about what has happened to them personally and to the people they love. We are here to help and support people when they are going through difficult times, so the House can be at its best when we show that we are human.

I will not forget these stories of the people we have loved and the people we have lost. The hon. Member for West Aberdeenshire and Kincardine (Andrew Bowie) talked about being a little boy and lying on his bed praying that his grandmother would go back to being the person he once knew. When the hon. Member for Gloucester (Richard Graham) spoke about his parents, I was thinking—I know this from my own family and friends—“How on earth could you have gone through and done all that?” and he said, “You never know what you can do until you have to do it.”

I really feel a sense among people here that we want to help families more, and help them deal with not only the emotional strain, as my hon. Friend the Member for Stockport (Navendu Mishra) mentioned, but the financial strain. I firmly believe that we should help people to help both themselves and one another. I spoke quite a lot about the absolute need not just to involve families, but to see them as genuine partners in the care process because, with dementia, we cannot give good quality care unless we support families.

Staff also play an absolutely vital role, as mentioned by my hon. Friend the Member for Liverpool, Wavertree (Paula Barker). They have gone above and beyond the call of duty, especially during this pandemic. As part of the social care reforms, we urgently need a national strategy to transform the pay, training, and terms and conditions of the care workforce. We saw high vacancy and turnover rates before the pandemic, and half of all domiciliary care workers are on zero-hours contracts.

We need to value staff and treat them like the professionals they are, because they are so important to the quality of care. I hope that the Minister will say something about that when she closes this debate. I am proud that the Labour Government in Wales did not just take part in claps for carers, but gave them a special payment. We need a much more long-term, sustainable solution there.

My hon. Friend the Member for Oldham East and Saddleworth (Debbie Abrahams) secured the debate, and, as she said, the bottom line is that we need social care reform. The truth is that our politics has been far too slow in devising a solution to this long-standing issue. As my mother would say to me, “It can’t be a surprise that we’re all living longer, Liz. You knew when we were born.” Her words will always echo in my ears.

As the brilliant group Social Care Future has argued,

“we all want to live in the place we call home with the people… we love, in communities where we look out for one another, doing the things that matter to us”.

The basic aspiration that older and disabled people should have the freedom and support to live a life like everyone else should not be regarded as extraordinary, yet in the 21st century, in one of the richest countries in the world, this is where we have ended up after years of political failure.

A long-term solution to the challenges facing social care, including for those with dementia, is not just desirable; it is essential. We cannot level up our country or build a better future or ensure we all look forward to living longer—not fear it—unless we invest in and reform social care. We heard lots of examples of what people are trying to do within the existing system, often against all the odds. We need a reformed system. We need to understand that social care is as important as the NHS. We have to understand that the two are inextricably linked.

We all—not just today in the debate and not just in relation to health and social care, but across society—need to understand that getting older and all these issues are not going to happen to someone else; they are going to happen to us all. Very few people want to think about what it really means to be very, very old, but one baby in four born today is set to live to 100. We need the House and the country to take long-term decisions, which our constituents and future constituents need. It really is time to act.