Dementia: Covid-19

Liz Kendall Excerpts

Thursday 12th November 2020 Westminster Hall

[Liz Kendall (Leicester West) (Lab)]

It is a pleasure to serve under your chairmanship, Sir Graham. I am so pleased that my hon. Friend the Member for Oldham East and Saddleworth (Debbie Abrahams) has secured this important debate. I thank all hon. Members who have spoken so powerfully on behalf of their constituents.

The pandemic has taken an unimaginable toll on people living with dementia, the staff who care for them and the families who love and do so much to support them. There have been a staggering 23,000 excess deaths in care homes in England during the pandemic so far, more than 15,000 due to covid-19. When we consider that, as others have said, 70% of all care home residents have dementia, the sheer scale of the impact of this awful virus is brutally clear.

We must remember that people with dementia do not just live in care homes and nursing homes. Some 60% are cared for in the community and their own homes, and they have too often been overlooked.

We need to learn the lessons from what has happened so far. We desperately need long-term reforms that transform all care services, whether that is care homes or care in people’s own homes, so that we have a system truly fit for the future. The virus has brutally exposed the fundamental flaws in our care system that many of us have been talking about for a long while. The most obvious is that, for too long, frontline care workers, who are so essential in caring for people with dementia, have not been properly valued or supported and they have not been properly paid.

We can see that in the way that at the start of the pandemic, many frontline care workers just did not get the personal protective equipment they needed. I heard many stories of care homes saying that their masks and other equipment had been requisitioned by the NHS. I want NHS staff to have proper PPE, but that shows that, on the ground, social care is still not seen as equally important. We also saw that in testing. It took a very long while to get the regular testing that care home workers need. Domiciliary care workers are still not getting weekly tests. That is a real issue, as we see how much this virus is spreading in the community.

The third issue is—let us be honest—around the pay, terms and conditions of frontline care staff. They do some of the most important work in this society, which is looking after the people that we love most, but many of them barely even make the minimum wage, because they are not paid for travel times. The key thing that stands out for me is that the Office for National Statistics has clearly found that care homes that pay full pay when people are off sick, that are not so reliant on agency staff and that do not have such high turnover rates because of low pay, have lower infection rates. We really need to learn the lesson from that for the future.

I hope that the Minister will set out what she plans to do about these issues. Where are we now at with tests for domiciliary care staff? We have heard that NHS and care workers will be a priority for vaccines. Can she tell us whether that will include domiciliary care workers as well?

All hon. Members have spoken about the importance of families in caring for people with dementia. We cannot deliver good quality care for people with dementia without not just the involvement of families, but their active participation and support. That is not just because we all want our families to be there for us when we get sick and frail; it is because when someone has Alzheimer’s or dementia, their family is their memory. They are the ones who really know that person—the music they like, the songs they used to sing, the books they read, the films they love. No matter how hard paid care staff work, which they do, they just cannot know the person to the same degree, but the families get precious little help and support and they are too often ignored in the debate.

We know that, even before the virus struck, there were 9 million unpaid family carers in the UK. Since the virus began, 4.5 million more people have taken on caring responsibilities, which is three times the size of the NHS workforce. Many carers were already being pushed absolutely to breaking point before covid-19. One of the worst statistics that I have ever seen from Carers UK is that about half of unpaid family carers had not had a break from caring for five years, and yet those very people are on average taking on an extra 10 hours of caring a week, which is having a really bad impact on their physical and mental health.

So, I hope the Minister will set out what action the Government will take to help family carers. Will there be more funding for them to have breaks? How can we get day-care services back? And how will we actually identify all these new unpaid family carers, because, quite frankly, most people who are carers do not think that they are carers; they are just a son, daughter, husband or wife who looks after the person they love. But they desperately need information, advice and support.

Also, as practically every single hon. Member has said, we need to do more to help families who have loved ones in care homes. We had a big debate about this in Westminster Hall yesterday. I will repeat myself a little bit, because it is such a massively important issue. Indeed, in my 10 years as an MP, I have never been contacted by people who are not in politics about any issue as much as I have been about this one. It really is so important, because for eight months people have not been able to see their mums, dads, husbands or wives. What they do know is that those loved ones are fading fast, which causes enormous anguish, because if someone feels that they are letting down their mum, dad, husband or their wife, it will scar them for life. I know that that is what I would feel if I could not see my mum or dad.

I understand why Ministers are really worried about the risk that covid-19 will come back into care homes after the catastrophic loss of life we saw during the first wave of the virus, but we need to understand the situation. The Government’s own independent scientific advisers—the Scientific Advisory Group for Emergencies, or SAGE—said in a report published on 21 September that the risk of family members transmitting the virus in care homes is low. And 60 organisations, including the Social Care Institute for Excellence, the British Geriatrics Society, the National Care Forum, Alzheimer’s Society and Age UK, all agree, saying that there is no evidenceAll those groups support calls, as does Labour—and indeed many hon. Members who have spoken today—for at least a single family member to be designated as a key worker, so that they can get the testing they need and we can safely start visits again. We first called for this in mid-June and again in September. I hope that the Government really take action. Their latest guidelines—about floor-to-ceiling screens, or having visits outside— are not good enough. Also, they will not work; a screen does not work for someone with dementia. In case anybody had not realised, it is also now dark, cold and wet outside, so outside visits will not work.

Yesterday, the Minister for Care said that a pilot will start on Monday in four local authority areas, with 30 care homes, to test family members. I had a lot of calls about that overnight. Where are these local authority areas? How long will the pilot last? The bottom line is that I do not think a pilot is good enough. The average length of stay of someone in a care home before they die is two years. We have had eight months of lockdown. This is the last Christmas for some people. We must get everybody—all families—getting those regular tests, so that visits can start again.

In conclusion, I have argued for almost two decades now for the desperate need for long-term reforms to social care. In July 2019, in his first speech on the steps of Downing Street, the Prime Minister said:

“I am announcing now that we will fix the crisis in social care once and for all, with a clear plan we have prepared”—

I emphasise those words, “we have prepared”—

“to give every older person the dignity and security they deserve.”

Yet more than 15 months later, that “plan” is nowhere to be seen; in fact, we seem to be going backwards.

The Health Minister in the House of Lords, Lord Bethell, said on 28 October:

“I have to be realistic. We are in the midst of a Covid winter, when there are enormous challenges in keeping the show on the road…It just would not be right to launch an important and industry-changing reform process when the focus of everyone in social care is the protection of the vulnerable and our loved ones.”—[Official Report, House of Lords, 28 October 2020; Vol. 807, c. 226.]

The opposite is true; this is precisely the time when we need those reforms to give people, families and care workers hope that there will be a better system, and that when we have come through this awful pandemic we will not go back to the same stretched, miserable, awful system that too many people have had to cope with. Families, care workers and the system as a whole are at breaking point. In the 21st century, in one of the richest countries in the world, that is not good enough. It is the challenge of our generation to sort this problem, and I hope that when the Minister responds, she will set out how we will do so.