My constituent Lisa Rutter is the founder of the charity Dementia Club UK, which hosts events in Barnet for people with dementia and their families, to provide support, advice and much-needed time out of the house to socialise with other people who are coping with similar life experiences. This work gives Lisa great insight into dementia care and the pressures on unpaid carers, and she asked me to meet a group of carers over Zoom to hear about their relatives’ traumatic experiences when admitted to hospital. I found the meeting deeply disturbing, which is why I applied for this debate.
In the time available, I can only include brief points about each case. I cannot hope to convey the emotional impact of the stories as told by the carers themselves, and I cannot hope to get across their real distress and anger that their loved ones had been let down, but I hope to give the House an indication of the seriousness of the problem.
I will start with Lisa’s own story. Her mother, Tasoulla Gavriel, was admitted to Barnet Hospital with covid in November 2020. Sadly, she died shortly afterwards. Tasoulla was a lovely lady, and I met her on a number of occasions. She was assessed by the hospital to be an eight on the Rockwood scale, meaning that she was viewed as severely frail and approaching the end of her life. Lisa believes that this diagnosis was entirely wrong. Her mother was sitting up and alert when admitted, and she did not have serious comorbidities, apart from advanced dementia, which meant she needed help with eating.
When Lisa was told by the hospital that her mother needed an oxygen mask, she asked for Mrs Gavriel to be put in hand mittens to prevent her from pulling off the mask and harming her treatment. The hospital refused, on the basis that this did not accord with hospital policy because it amounted to a deprivation of liberty. The hospital decided that it was neither proportionate nor in Mrs Gavriel’s best interests for her to be given mittens. That is despite mittens being used when Mrs Gavriel had been admitted the previous year for a hip operation. Lisa sincerely believes that mittens could have saved her mother’s life.
Another deeply distressing aspect of this case is that covid visitor restrictions meant that Lisa had only very limited time with her mother in hospital. I raised this in Parliament at the time, urging visitor restrictions to be eased for patients with dementia. I very much welcomed the subsequent introduction of greater flexibility for people to spend time with their loved ones in hospital. We must never again return to restrictions of the sort we saw during the pandemic.
Some of the group I spoke to did not want to be named, so I will simply refer to them as Carers 1 to 5. Unlike the others, Carer 1 is not a constituent and his experience does not relate to my local Barnet Hospital, but I do not want to leave him out. He emphasised how crucial it is that people with dementia continue to move and walk, if they are to stave off further loss of cognition, but he told me that staff at the hospital to which his wife was admitted refused to help her to walk. Even more worrying, he had to intervene twice to prevent a nurse from giving her the wrong dose of medication. Had he not spotted the mistake, a potentially lethal dose could have been administered.
I congratulate the right hon. Lady on securing this significant debate, as dementia is going to affect so many people’s lives in the coming decades, as more and more people are of retirement age. In Devon, the dementia specialist Jonathan Hanbury has suggested that we should place more funding and focus on community hospitals, community treatments and community services, so that people can keep their brain agile further upstream. He suggests that the NHS’s focus on funding for acute hospital services and expensive drugs misses the value of prevention. Does the right hon. Lady agree?
Those are very valid points. It is important to keep people out of hospital for as often as possible, but that is particularly the case with dementia patients, given the dislocation and insecurity that comes with moving them to a different environment. Measures to keep people healthier for longer and to deliver care via the primary care system rather than in acute hospitals are an important way to address some of the problems I am outlining.
I commend the right hon. Lady for raising this issue. Over the past couple of years, I have dealt with a number of incidents similar to the one she refers to. Does she agree that, for those with dementia and Alzheimer’s, the emotional upheaval of being taken from a safe place where they feel comfortable can often lead to incredible distress, which can, in turn, result in aggressive behaviour? I know of one young nurse who had her arm broken in two places. It was not the patient’s fault, as he was simply beside himself and could not let go of her. Does the right hon. Lady agree that there must be enough staff in place to ensure that one young nurse should not be left screaming in pain, with no one there to help her? Does she also agree that that patient deserves compassion and understanding for their outburst?
The hon. Gentleman makes an important point. One problem that emerges from some of the cases I will talk about tonight is that disruptive behaviour by patients with dementia, including shouting, can often be just an attempt to communicate. It is vital that staff understand that. Of course, I agree that it is essential that we have sufficient numbers of staff to ensure that they can give appropriate attention to patients with dementia in these circumstances.
The father of Carer 2 died a month after being admitted to Barnet Hospital. This constituent reported that food and drink was often just left in a tray, with little apparent effort made by staff to feed her father. He was left all day in a chair or in bed, with no attempt made by the staff to encourage him to walk. He was not supported while in the toilet, and when that led to distressing and undignified consequences, including the soiling of his clothes and hands, he was not washed until the following day.
Carer 3 told me that her husband’s condition deteriorated significantly during a stay in Barnet Hospital. Apparently, the nurses complained and said that he screamed all night. My constituent explained to them that that meant he wanted to get up to go to the loo but was prevented from doing so by the side bars on the bed. He was simply calling out for help. She often found food left untouched, yet no one seemed to note that her father had stopped eating. The catering staff just took the uneaten meals away. His medication was also stopped without his family being told, which led to a worsening of his symptoms and his anxiety.
Carer 4 told me about her partner, who has early onset Lewy body dementia and was admitted to Barnet Hospital in April 2022 after a fall. Apparently, until that point he was walking, climbing stairs and coping fairly well at home, albeit that he was a little wobbly on his feet. But the last time he ever walked was when he arrived at the Barnet accident and emergency department.
7:00 pm
Motion lapsed (Standing Order No. 9(3)).
Motion made, and Question proposed, That this House do now adjourn.—(Aaron Bell.)
Carer 5 became increasingly desperate to take her father home as his condition deteriorated. He had always been meticulous about his personal hygiene, an old-style gentlemen who always dressed in a shirt and tie, no matter what the occasion. After time in Barnet Hospital, he was unshaven and unkempt, and he stopped eating. It apparently took six months for him to return to something like his old self, but his appetite never returned to what it had been. He has since passed away.
Themes that emerged again and again in my discussions with this carers’ group included: repeated difficulties in carers getting to speak to nurses or doctors about the care needs and health of loved ones; failure by staff to understand the care needs of people with dementia; failure to ensure patients ate and drank; and failure to keep patients mobile and walking. From what I heard from my constituents, it is clear that allowing extensive visitor access is crucial for patients with dementia, so relatives can help communicate with staff and assist with feeding and care. As I said, we must never again tolerate the type of restrictions that were in place during covid. Communication by doctors and nurses to relatives must be improved as well.
The group asked that the NHS develops a much larger volunteer programme, training many more people to support dementia patients with eating and walking if they do not have family to help them. In addition, volunteers should be trained to advocate for dementia patients if they do not have relatives who are able to do that.
These cases show a need for a more in-depth and effective training programme for NHS staff on how to look after patients with dementia. I commend the training programme on understanding dementia that Barnet Council has commissioned my constituent, Lisa Rutter, to carry out and I urge local NHS services to consider taking part in that programme. We need to do as much as we possibly can to keep people healthier for longer, and ensure that when they get ill there is an option for treatment in the community, to keep as many people out of hospital as possible.
I sincerely thank my right hon. Friend the Member for Chipping Barnet (Theresa Villiers) for securing this Adjournment debate, and for her powerful speech. She really brought the subject to life through the examples from her constituency of people’s experiences in hospital. They were very difficult stories to hear, and I am very sorry to hear of times when it sounds like the care for people’s loved ones has fallen short.
My right hon. Friend made some powerful points that I want to address, starting with the fact that, as she said, there are many thousands of people living with dementia, and the number is only expected to increase; indeed, there will be more than a million by 2025. Many people with dementia will also be living with other health conditions. At the moment, it is estimated that around a quarter of the beds in hospitals are being used by patients with dementia, so ensuring that people receive the right care when they are in hospital with dementia is really important, as is doing our utmost to avoid unnecessary admissions and ensuring that people are discharged from hospital on a timely basis.
It is really worth emphasising the point that my right hon. Friend made about dignity, and the fact that every single person counts, at whatever stage of their life. There are challenges to ensure that people living with dementia have that dignity, particularly when they are in hospital. I, too, pay tribute to the many unpaid carers who are looking after their loved ones with dementia. I know what a huge burden and challenge that can be. However much someone loves somebody, there is a huge demand on them when they are caring for somebody with dementia. It can be very difficult, very distressing and absolutely relentless, however much they love them. I pay tribute to all carers who are doing that.
My right hon. Friend spoke first about Lisa Rutter, who very sadly lost her mother, who was living with dementia, during the pandemic—in hospital, if I heard my right hon. Friend correctly. I thank Lisa Rutter for the work that she is doing as the founder of Dementia Club UK. It is fabulous to be supporting other people to look after loved ones with dementia, or indeed those with dementia themselves. My right hon. Friend talked about the time Lisa’s mother spent in hospital, and how, for instance, Lisa knew what her mother needed but felt that she was not listened to, and that it may have contributed to her mother’s death. My right hon. Friend also talked about the visiting restrictions during the pandemic. I will talk about those in a moment.
I have very little time, so I am afraid I will not give way.
My right hon. Friend the Member for Chipping Barnet talked about the social care workforce, another subject close to my heart. We have a strategy for the care workforce. We are building care as a career, in particular to boost recruitment and retention among our home-grown workforce. We recently published the first ever national career structure for care workers, and we are launching a new national qualification to boost the supply of care workers.
Avoiding admission is another priority for me. Clearly, some people should be—absolutely must be—in hospital for the treatment they need, but we know that patients with dementia in particular can deteriorate in hospitals, so we are doing more work with the national health service and social care to avoid admission when it is not truly necessary by putting in place alternatives or, at the other end, supporting earlier discharge through the roll-out of the Hospital at Home initiative, or virtual wards, under which we committed to at least 10,000 hospital-at-home beds or equivalent as part of emergency care recovery plans. The NHS has over-delivered on that, so we now have more than 11,000 Hospital at Home beds, which help people who would otherwise be in hospital receiving acute care. They receive that care and are able to recuperate at home, avoiding the risk of a longer hospital stay and deconditioning.
My right hon. Friend talked about dementia research and the new treatments coming onstream. The Government have committed to doubling our investment in dementia research during this Parliament, and we are on track to do that with our dementia mission. We are also working very closely with NHS England to be ready for the breakthrough treatments lecanemab and donanemab coming onstream. I should be clear that we know very well—I have received clinical advice on this—that those treatments have quite significant side effects, so they will not be suitable for everybody and I put a note of caution there. We are waiting to hear whether they are approved by the Medicines and Healthcare products Regulatory Agency and the National Institute for Health and Care Excellence. In the event of approval, NHS England is taking steps to be ready to put in place the levels of diagnosis required to be able to support those treatments.
I thank my right hon. Friend for securing the debate. I will continue my work to pursue the topics that we have discussed this evening.
Question put and agreed to.
7:23 pm
House adjourned.
My constituent was initially restricted in visiting hours and had to fight to be allowed to stay in the hospital outside those times. She felt that the staff, especially some of the agency workers, did not understand her partner’s care needs. She was given the number for the specialist dementia nurse covering the hospital trust, but the phone was never picked up, no matter how often she rang. During his stay in the hospital, her partner deteriorated far more quickly than he had before. He was kept in bed constantly and lost the ability to walk—he is only 55. At one point, after undergoing an MRI scan, he was left distressed and confused in a cold hospital corridor, wearing a hospital gown damp with urine after radiographers had removed incontinence Conveen equipment. After he got out of Barnet Hospital, he said he would never, ever go back, no matter the circumstances.
Carer 5 told me about her father, who was admitted to Barnet Hospital with pneumonia in November 2021. When an ambulance was sent to pick him up, he was able to walk downstairs without assistance and climb into the back. Throughout his stay, it was extremely difficult for my constituent to get to speak to any doctor or nurse about his care.
I want to emphasise that I appreciate the efforts being made by frontline NHS staff to care for and support people with dementia. I appreciate that, although there have been some serious failings in the cases I have referred to, thousands of people spend time in Barnet Hospital every year and receive the best quality care. I thank all the NHS workers who make that happen. I accept that there is currently great pressure on staff, as healthcare need continues to expand exponentially and the NHS undertakes the massive task of catching up after covid.
When I raised these cases with Barnet Hospital, it emphasised its commitment to ensuring that patients with dementia and their carers have the best experience possible. Staff told me they had set up a dementia service in 2016, managed by a dementia clinical nurse specialist. In 2023, the hospital apparently treated 356 patients, trained 1,598 members of staff and received some very positive feedback from patients and carers. In 2015, it was one of the first NHS trusts to sign up to John’s campaign to ensure carers can visit patients with dementia at any time outside visiting hours, by prior arrangement with the ward manager.
The trust provides dementia training above the expectations set by NHS England, including mandatory tier 1 dementia awareness training on induction. Specialist dementia training is also provided for all volunteers. To support patients during meal times, a red tray system is in place: patients who need additional time, encouragement or assistance are identified and provided with a red tray.
In 2017, it launched a “Keep me moving” campaign, which focuses on keeping patients as active as possible while they are in hospital. There is a telephone line for carers and loved ones to contact dementia clinical nurse specialists.
Although I recognise the value of these measures, and I welcome all of them, I am afraid that the cases I have outlined indicate that they are simply not always delivering the intended results; they are not enough. I believe that the failures in these cases demonstrate that more must be done to ensure that dementia patients receive the best care possible and that they receive dignified treatment at all times. I therefore hope that the management at Barnet Hospital will reflect carefully on the matters raised by my constituents, which I have set out this evening.
Care and support for people with dementia is one of the most important challenges of our generation. This is a task that is likely only to grow in scale when, in years to come, around one in three people born today are expected to develop dementia. We must ensure that every one of those people has access to high-quality health and social care. That means continuing to increase resources for the national health service, so that staff can give each patient the time and attention that they need.
In this financial year, the NHS resource budget is due to be £157.4 billion. It is due to reach £162.6 billion in 2024-25. I welcome the announcement this afternoon by the Chancellor of a further £5.85 billion. The total is far higher than ever before, meaning that the NHS has more hospital doctors and nurses than ever before and is delivering more appointments, tests, treatments and operations than ever before. But if we are to relieve pressure on the NHS and tackle waiting lists, and ensure that every patient gets the best care, we need to tackle delays in discharging people back into care settings in the community. To do that, it is essential that we fund local government to play its part. I welcome substantial increases in funding for social care over recent years, but the cost of social care continues to place real strain on council budgets.
If we are to have the care home places that we desperately need, care providers also need to be paid a rate by councils sufficient to provide the level of care needed by people with dementia. We also need a long-term strategy for the social care workforce to ensure that we train and recruit the people that we need to carry out these vital roles, and that we pay them appropriately given the importance of the job that they do.
Now that the Government’s science and research budget is one of the biggest in the world, we must give high priority to dementia research to tackle this massive epidemic. Lecanemab and donanemab represent an incredible breakthrough; finally, there is a glimmer of hope. These are the first ever drugs shown to address the disease itself rather than just its symptoms. We must ensure that the NHS is ready to start delivering these treatments once final approvals are given. That will require a step change in testing capacity so that we identify people who can benefit from the drugs in time for them to have an effect.
As a society, we must do everything we can to support unpaid carers, including with respite care. According to the Alzheimer’s Society, around 1.8 million people in England provide some form of care and support for friends or relatives with dementia. The overall value of those services provided amount probably to £12.2 billion.
I conclude this evening by paying tribute to every carer who looks after a loved one with dementia, including the six brave individuals who spoke to me about their experiences and prompted this debate today. They are all heroes to whom this country owes a huge debt of gratitude; they deserve our deepest thanks and our support.
My right hon. Friend talked about another constituent, whose wife was in hospital. She rightly talked about the importance of mobilising somebody with dementia, and how her constituent’s wife was nearly given the wrong medication, which could have been fatal. She spoke about the importance of his intervention. She also spoke about a constituent who was a carer for their father, and the importance of mobilisation, and some of the communication challenges for somebody with dementia.
My right hon. Friend talked about one person who had been screaming all night, as described by the staff. Actually, the family member who knew them understood that they were calling for help, as they needed to go to the toilet. That brings to life how difficult it can be when somebody has dementia and is not necessarily able to articulate their needs and what they want. Those who know them well will often know what they are trying to say or communicate, but that can be difficult in hospital when they may be being looked after by staff who simply do not know them well enough to know what they mean.
My right hon. Friend talked about food being left uneaten. If somebody is not eating in hospital, clearly they are likely to lose weight and their condition may deteriorate. She also talked about medication being stopped, and she talked particularly about somebody whose partner had early onset dementia, and had been coping fairly well at home. He walked into A&E, and that was very sadly the last time he walked. That emphasises the challenge of keeping people moving and maintaining their ability to be mobile during a hospital stay. She also described the fight to visit outside visiting hours.
I very much hear my right hon. Friend’s asks on visitor access, volunteers being trained in dementia care, as well as staff training, and avoiding discharge delays, among other things. I will pick up on some of those.
First, on the challenge of caring for people with dementia when in hospital, many hospitals have worked hard to do better for patients with dementia, for example creating dementia-friendly environments by changing the colour and lay-out, ensuring that staff are trained in dementia, and having dementia leads and dementia-lead nurses, as well as having training for volunteers. Standard training in caring for people with dementia is available through NHS England for staff and volunteers.
Clearly, my right hon. Friend the Member for Chipping Barnet described examples where care fell short. I have no doubt that across the NHS, with the work already taking place, we can go further. I will raise the points that she made about secondary care with my colleague, the Minister for Health and Secondary Care, so that we can work together on ensuring that care is right in hospitals. He also has oversight of workforce, and we should focus on whether the training that I know is available is being taken up by enough staff, considering the number of people in hospital with dementia.
On visiting, my right hon. Friend spoke about a subject that is close to my heart. Having been involved in some of the decisions about social care visiting restrictions during the pandemic and knowing how hard those decisions were—weighing up the infection control concerns and ensuring people could spend time with loved ones—we have been putting in place changes to Care Quality Commission regulation to make visiting a fundamental right, a fundamental part of care and a fundamental standard of care to ensure better access for loved ones to their family members in care homes and in hospitals. I know in particular how important that is for people with dementia, among others. The CQC is consulting on the implementation of the regulatory change, which will be live shortly.[Official Report, 12 March 2024, Vol. 747, c. 6MC.] (Correction) I believe we have taken a significant step to address concerns expressed about visiting.
Another thing my right hon. Friend spoke about was faster discharge. I am very alert to the risk of patients deconditioning in hospital, particularly patients with dementia. That is why over the past year or so, we have worked hard with the NHS to get better at identifying patients at greater risk of deconditioning, in particular those with dementia, on their admission to hospital. We have done earlier discharge planning and have been getting care transfer hubs established all across the country, which will do the work on more complex discharges. Often someone with dementia may need more access to social care. We may need to increase the access to, availability and supply of social care, so that it is there for those who will need it when they leave hospital. We have made some real progress on that over the past year.
That goes hand in hand with the work that we are doing with NHS England to improve the diagnosis rate for dementia. We have a target dementia diagnosis rate of 66.7%. That dropped during the pandemic because dementia services and assessment had to be closed, but it has been gradually building up, and I expect NHS England to get back up to that level during the course of this year. That is really important, because having a diagnosis helps people—the individual with dementia and their carers, for example—to access the support and back-up that they should be receiving.
I am conscious of the clock ticking, so I have tried cover some of the territory that my right hon. Friend set out in her speech, which I thought was very powerful in raising these significant issues for those with dementia receiving care in hospital, their carers and loved ones. I completely agree about the importance of dignified treatment and treating those with dementia with dignity at all times. I know that that can be particularly challenging in hospital, but we have to ensure that that is the case.
We will ensure that we get all the necessary care in place outside hospital, which avoids unnecessary admissions; support people to be discharged from hospital quicker; get ready for the arrival of new dementia treatments; and raise awareness about the significant proportion of dementia cases that can be prevented or at least delayed by looking after our health. In fact, the risk factors for dementia are similar to those for heart disease and other things, and there is relatively low awareness of that. We will see more people with dementia in the years ahead, but we can do more to raise awareness of how people can maintain their health and stave it off.