End of Life Care

Kelvin Hopkins Excerpts

Wednesday 2nd March 2016 Commons Chamber

[Kelvin Hopkins (Luton North) (Lab)]

I am pleased to have the opportunity to speak in this important debate, although I will not speak for too long. I have long been concerned about the long-term care of the elderly and have tabled many early-day motions in the past, including following the royal commission report in the late 1990s. The then Government went to great lengths to ensure that the report was not agreed unanimously, because they did not want to accept its recommendation for free long-term care for everyone, whether they be in residential care, at home or elsewhere. My early-day motion following that Government decision was supported and signed by more than 100 hon. Members, so my concern was shared across the House.

The Health Committee’s report “Dying without dignity” is admirable, and I congratulate the hon. Member for Totnes (Dr Wollaston) and her Committee on producing it. It recommends free social care, which I am very pleased about. The reports by the Public Administration and Constitutional Affairs Committee, of which I have the honour to be a member, are also relevant to long-term care. The Chair of the Committee is going to speak later, so I will not talk about them too much. “Investigating clinical incidents in the NHS” focuses on the appalling number of deaths and refers to the Mid Staffs hospital disaster, which was shameful.

Subsequent to the Government’s refusal to pay for long-term care, there have been a series of forced privatisations of local authority care homes, which I opposed. In my own constituency, three first-class local authority care homes, where people would spend the last days of their lives, were forced to close and the residents were handed over to the private sector, which is driven by profit rather than concern for care alone. Some of the private homes are very good, but some are not. There have been some serious, well-publicised lapses of care, and there has been an ongoing crisis in the care homes world. I am concerned about that.

We congratulate ourselves on how we care for our elderly, particularly in the last days of their lives, but the situation is not all good. Some hon. Members have referred to the problems, including people not getting the palliative care they deserve and need. That is deeply worrying. We are all going to die one day and some of us are closer to that time than others, and we want to make sure that we and our families are cared for properly in those last difficult days. The subject needs more debate, more Government action and more support.

The reports are concerned about compassion. Undoubtedly, medical and care staff are overwhelmingly compassionate people, but it is not good that they are being put under pressure and made to work long hours; that they have too many residents to care for in the homes; and that they are being rushed because of concerns about costs and the desire to maximise profits. That means that people suffer. We have all had cases—I certainly have—where people have not been treated well in their homes or have not had the right care in a hospital or a care home simply because the staff are under pressure. People’s compassion starts to be diminished when they feel they are being pressured and not being treated with respect. Pay is one thing, but compassion is damaged when a staff member is looking after too many patients or residents, or rushing around too many homes with elderly single people who are in their last days. We have to make sure that compassion is to the fore in all these matters.

I have also said on many occasions that we do not spend enough on health and social care in general. We are rightly proud of the national health service and the principles on which it is based, but it is underfunded. We spend at least 2% less of our GDP—about £35 billion a year less—on health than France or Germany. With an injection of £35 billion a year, some of the stresses that cause the problems in hospitals in particular would go away. I also think, and said to my right hon. Friend the Member for Leigh (Andy Burnham) before the last election, that long-term care of all kinds ought to be provided on precisely the same basis as the national health service, completely free at the point of need. I believe that it should be provided by public servants rather than by the private sector. Only when we accept that we have to pay properly for the health and care service and resource it appropriately—that we have to pay people properly and make sure that we have enough staff—will we ensure that elderly people are cared for when they are alive, and that they die a dignified, pain-free and suffering-free death.

I will leave it there, although I would like to say a lot more. I hope that other Members will support some of the things that I have said.

--- Later in debate ---

[John Redwood (Wokingham) (Con)]

I will draw on conversations that I have had with people around the country who have experienced a relative dying fairly recently, as well as on my own observations. I will not mention a particular case, because if I did have a difficult case, I would take it up privately in the usual way.

The first conclusion that I have formed, which I think the Secretary of State has wisely come to, is that a patient undergoing the last stages of their life and their family need a named doctor who is in charge. The family and the patient, when the patient has capacity, need to have access at reasonable times to that doctor to find out where they have got to and what the next stage is likely to be.

I believe that Ministers have put in place a requirement for there to be a named general practitioner for every patient when they are at home or in a care home. That is very welcome and let us hope that it works, so that there is someone people can turn to, whom they trust and know. However, when, as so often happens, people enter hospital and may not come out again, because of the way in which rosters and rotas work, it means that every day or every other day there is a different group of doctors and nurses in charge of them.

That can mean one of two things. Sometimes, the family and/or the patient are constantly retold very bad news because the new team feels that they have a duty to tell them. It may not be helpful for people to keep getting the same bad news. Alternatively, the family or the patient with capacity may want information at a particular time, but no one is up to speed because they have only recently taken over and have not had time to read the notes. Indeed, reading the notes is not necessarily as good as being continuously in charge of the patient and talking to them over the days or weeks in which the treatment is undertaken or as their last days draw near. I therefore urge Ministers to get behind the idea that it is best if there is a named senior doctor—perhaps a consultant or registrar.

Often, people in their last few weeks or months of life have complex and multiple medical conditions, so a series of different consultants are involved, but no one consultant feels as if they are ultimately in charge. I am told that in some hospitals patients are moved from ward to ward at very short notice, with different specialties in mind. The family then turn up and do not even know where the patient is, because they think that they will be where they last saw them. That can be very disruptive for the family. More care and attention is needed in some cases to deal with that issue.

The second issue, which has been mentioned by other colleagues, is the interface between social care and hospitals. All of us who visit hospitals as Members of Parliament and sometimes as family members will have observed that a very large number of patients in a lot of our wards are extremely elderly and very frail, with lots of complex medical conditions. Some of them may not be easy to treat. Others might be better off in a care home or at home, but there has been a failure to put together the set of services that they need.

I do not really believe that that is a money issue, because in many cases one could buy an awful lot of social care for the cost of the hospital bed that the person is occupying. Social care might even be cheaper. I am not recommending that we take people out of hospital because somewhere else is cheaper, but if they would be better off somewhere else, if they want to be somewhere else and if there are no longer any medical interventions that the hospital can make, it is sensible to take advantage of social care if it is also cheaper.

[Kelvin Hopkins]

I hear what the right hon. Gentleman says, but when local authorities know that they have to pay for care when somebody comes out of hospital, they will try to persuade them to stay in hospital for as long as possible. Different budgets put different pressures on different institutions.

[John Redwood]

The hon. Gentleman is right. Throughout the time he and I have been in the House, under Governments of different persuasions, we have all known about the problem, we have all said that we need to solve it and still we have not managed to do that. I hope that our current talented Ministers can do something that no previous groups of Ministers have been able to achieve. There is an experiment because, with the devolution models that Ministers are considering, if the health and social care budgets are put together under the same authority, the excuse that there is a budget row goes. One would hope that the best interests of the patient were dominant and that authorities would realise that, in some cases, the best interests of the patient also enabled them to save money through switching from an expensive hospital bed to a decent care package. That could be helpful, and I hope that Ministers will do that.

For the families of those who die, the need for care does not end at the moment of death. That is generally understood by the public sector, but there are serious problems with delivering the support and administrative back-up that families need when a loved one dies. Several people who have been through this recently told me that the first thing that happens is a delay in getting a death certificate. Without a death certificate, nothing can be done to settle things. People cannot even hold a funeral because they cannot instruct a funeral director until they have a death certificate.

Not only is there a delay in getting the death certificate from the medical staff at the hospital, but people cannot register the death because of the insistence on a face-to-face meeting with the registrar, which can mean a further delay of many days before a slot becomes available. Quite a lot of families therefore end up with one, two, three and four weeks of delay before they get the death certificate, which is necessary to trigger the funeral and any financial changes consequent on a person’s death.

The Government have introduced a sensible “Tell Us Once” system so that when a person dies, the family can fill in quite a complicated electronic form, which is meant to tell all Departments with which the dead person may have been involved what the Government need to know. There are two problems with that. First, families often do not have all the knowledge that they need. Unless they have that knowledge, the Government seem unable to cross-refer and discover that, for example, the person had a benefit as well as a pension. It would be helpful if Government computers talked to each other more adequately so that the Government could do more of the work and families just had to notify them of the death and did not have to know every detail of the dead person’s financial affairs.

Secondly, because the delays with the death certificate and registrar appointments often mean that registration of the death is delayed, the Government make payments to the deceased person, and the families, having used “Tell Us Once”, get a set of not terribly friendly letters—I appreciate that they have been dressed up a bit—saying, “Your dead relative owes us this much money”. The families cannot necessarily get their hands on that money, but they are none the less obliged to pay the Government back, at an unsettling time when they are mourning and grieving and were not expecting a tax or benefit bill.

In the interests of handling the families better, the Government should speed up their side of the administration so that the death can be registered promptly, the Government do not make wrong payments and the families are not faced with letters demanding money back when they have other things on their mind and are trying to deal with the hurt. It does not make it better when the Government say, “We’re very sorry you’ve had a loss” if they go on to say, “but you owe us this much money. The usual rules apply. See you in prison if you don’t pay”.

We need to improve greatly on dealing with the first few weeks for the poor grieving families, who do not necessarily know the process, are very lost because they have lost their loved one, and are not helped by delays and sometimes the incompetence of the regulatory authorities.