Dementia

Oliver Colvile Excerpts

Thursday 10th January 2013 Commons Chamber

[Sir Tony Baldry]

I do. I have been trying to encourage organisations such as St John Ambulance to think about providing training for carers. Some people find that, overnight, their wife or husband has a stroke or serious fall and they find themselves as the carer, and others must deal with a gradually deteriorating situation such as dementia. Such experiences are frightening and the people involved often have to grapple with bureaucracy, the health service and so on. I am sure that if it were possible for local training to be provided for carers, a lot of these people would feel much more empowered and much more competent. The question is finding the organisations that can deliver such training.

[Oliver Colvile (Plymouth, Sutton and Devonport) (Con)]

Does my hon. Friend agree that one key thing that also must happen is ensuring that Departments also demonstrate a lead on tackling dementia? The hon. Member for Plymouth, Moor View (Alison Seabeck) and I have been very impressed by what HMS Drake has been doing; the people there have been instrumental in Plymouth in fighting for more dementia awareness, including among Departments.

[Sir Tony Baldry]

That was an extremely good point, and it was one made by my right hon. Friend the Member for Sutton and Cheam (Paul Burstow) in opening this debate; every Department has a part to play in tackling dementia. Nobody would immediately have thought of the Ministry of Defence as having a role to play in tackling dementia, but every Department, as part of collective, joined-up government, needs to consider what it is doing on dementia.

The last point I wish to make relates to research, attitudes and so on. One of the most depressing things about dementia is going into residential care homes and seeing people sitting doing nothing, staring at the wall. That is desperate. I have little fear of death—death at the worst can be eternal darkness—but I have a total fear of getting dementia. It must be a sort of living death for as long as one has it.

A number of organisations are coming forward with ideas of how to improve, if not people’s memory, how they can cope with dementia. An organisation with a strong following in Oxfordshire is the Contented Dementia Trust. Some of its work is supported by the Royal College of Nursing, and Oliver James’s book, “Contented Dementia”, is one of the best-selling books on dementia in the UK. The Contented Dementia Trust has a particular way of helping people with their memory, because from a carers’ perspective dementia, once diagnosed, is best understood as a person’s failure to store coherently the facts of what has just happened in their life—although associated feelings are stored—whereas facts stored long before the onset of dementia remain relatively intact and potentially useful. That is why when one goes to see people with dementia they can tell in graphic detail what they did during the second world war or their childhood, but they cannot say what they had for lunch. The Contented Dementia Trust has worked out a method that, it believes, helps people with that.

I hope that somewhere in the Department an evaluation of the various systems has been undertaken with an open mind, to consider what works. Clearly, what is required is consideration of how to stimulate people with dementia so they do not become part of the living dead. As my hon. Friend the Member for Chatham and Aylesford said, we want to ensure that those with dementia can live with dignity and can live lives of the best quality. That does not mean being stuck in a chair in a communal lounge all day between meals, perhaps getting some stimulation or perhaps not getting any. They require stimulation, help with their memory and the sorts of activities that the right hon. Member for Salford and Eccles identified as taking place in various day centres in Salford.

We all need to share and develop the practices that work best, to ensure that people do not get proprietary about there being one correct way of dealing with dementia. We must all recognise the limits of our knowledge. One of the desperate things about dementia is that those who suffer from it cannot tell us what is happening in their lives, as if they have moved on to another planet and cannot come back and tell us what is happening to them. It is a one-way journey and they cannot help us—we can only sense whether they are happier or more contented. I hope that Ministers and officials will consider the work of organisations such as the Contented Dementia Trust with an open mind.

The debate highlights for us all the sheer scale of the challenge over the next 20 to 50 years. It must continue to be a national priority if we are to get the compassion and care that every one of our constituents and loved ones deserves.

--- Later in debate ---

[Oliver Colvile (Plymouth, Sutton and Devonport) (Con)]

My hon. Friend the Member for Chatham and Aylesford (Tracey Crouch) hit the nail on the head when she made the point that everyone knows somebody who has been affected by dementia or some form of Alzheimer’s. I have a stepmother who is very elderly now—she is 93 and is in a home. The last time I went to see her, she was woken up and she looked at me, squawked and went straight back to sleep again. That is very sad—it is incredibly sad—for one simple reason. This was a woman who got a degree at Oxford in 1938, at a time when women did not get degrees. She then became an interpreter at Bletchley Park during the war and played a significant part in defending our country from Nazi oppression. For her to be in that position now is very worrying and concerning for all of us. I very much hope that she continues to have an acceptable life, and I am delighted that everyone there is most certainly going to be helpful.

I pay tribute to the hon. Members for Bridgend (Mrs Moon) and for Oldham East and Saddleworth (Debbie Abrahams), who must have found it very difficult to talk about their personal lives and experiences. I commend them both for being able to do so in this environment and for getting through it. May I also say what an honour it is to share a platform in this debate with the hon. Member for Plymouth, Moor View (Alison Seabeck)? I suspect that, between us, we will find ourselves repeating each other somewhat, although I am in the fortunate position of going first.

The issue of social care is becoming increasingly important. There has been an enormous amount of press attention on how people are cared for in the latter years of their lives. However harrowing the stories may be, they provide us with an opportunity to speak about social care and lessen the stigma that surrounds death and dying. Dementia is already a significant issue and a growing concern that should not be ignored.

I am delighted to say that I represent a constituency in a part of a city that has a really good reputation on dementia, especially through the university. An enormous amount of research is done; indeed, I am for ever getting telephone calls from Ian Sheriff—for whom I have an enormous amount of time—who rings me up and gives me advice on how we should handle this issue. However, I was surprised to find out that there are currently more clinical trials into hay fever than into some common forms of dementia. So I heard that our mutual friend the Health Secretary had announced that spending on dementia research would receive a £22 million cash injection I was incredibly grateful. More funding will most certainly need to be made available to excellent bodies around the country such as the Alzheimer’s Society and to universities such as Plymouth.

Plymouth university conducts a great deal of research into dementia and this policy area. In September the university held a very good conference, which it asked the Prime Minister to attend. Unfortunately he could not come, but we will see whether we can have another go later. Any help that the Minister, my hon. Friend the Member for North Norfolk (Norman Lamb), can give to encourage the Prime Minister to come and participate in the dementia conference would be helpful. Indeed, his lead in the dementia challenge has given the whole thing an impetus. The university also does a lot of work on community engagement and raising awareness. Indeed, shortly after Christmas I went to Stoke Damerel community college, which has done a lot of work on encouraging youngsters to become more involved in community engagement with dementia. May I also pay tribute again to HMS Drake, which is taking a big lead on dementia and ensuring that this happens elsewhere in the Ministry of Defence?

In Plymouth there are around 3,200 individuals with dementia. That figure is forecast to rise by 35% in the next 10 years, but this is just the beginning. The diagnosis rate is 39%, which it is estimated will increase by 27% before 2021. That means that a large number of people in my constituency do not have access to the care and support they need on a daily basis. The new NHS mandate commits to drive up diagnosis, which can only be a good thing for both sufferers and their families. I know that the Government want the clinical commissioning groups and the NHS Commissioning Board to work together on that aim, and I would welcome more information from my hon. Friend the Minister on what plans are in place to ensure that that happens, so that the lives of sufferers and their carers can improve.

GPs are on the front line when it comes to driving up diagnosis rates. They express their concern about mistaking the symptoms of dementia for old age. In some cases, they do not make a diagnosis of dementia because they feel that to do so is futile. I am aware that the Department of Health has put the case for a reward through proactive case finding, which is due to be consulted on this year. Is there a timetable for that consultation to begin? The sooner we start to diagnose those in need, the sooner we can start to help them.

Earlier this week, I participated in a debate on the Liverpool care pathway. We had an interesting discussion, and real concerns were raised. I told a story about a constituent who came to see me about her father. It had been decided to put him on the Liverpool care pathway, but the family were concerned because they knew nothing about that until they were told about it by one of the car park attendants at the hospital. The process was supposed to last for two days, but it went on for 12 days, and the family were very concerned about that. Will my hon. Friend the Minister have another look at that issue, just to make sure that such cases have been included in the review of the LCP?

A number of excellent facilities exist around the country, especially in Plymouth, and I want to pay tribute to St Luke’s hospice, and to the hospice movement in general, for doing a tremendous job. They are certainly appropriate places for people to spend the last few days of their lives. Given that the report on Stafford hospital is to be released shortly, however, it is clear that dementia sufferers often do not have the dignified death that we would expect for them. I am aware that we are all mortal, although I have wondered whether God might make an exception in my case, and whether I might be here for ever and a day. I know that that is not going to happen, however.

It is important to ensure that, when dementia sufferers die, they are able to do so with dignity and without pain. The more work that we can do to ensure that that happens, the better. Vulnerable people need to be properly looked after, as do their carers. We need to ensure that we talk to the relatives as well, to ensure that they understand the processes involved. None of us—politicians or anyone else—likes to be ambushed, and it is important to help those family members to work their way through their suffering as well.

[Neil Parish (Tiverton and Honiton) (Con)]

My hon. Friend is making some good points. Those who care for dementia sufferers need respite care, but we do not always provide for that as well as we should. I am keen to see more respite care being provided for those who care for people with dementia.

[Oliver Colvile]

I agree with my hon. Friend. This is also about the families, who have to deal with dementia on a daily basis.

Given the appalling events at Stafford hospital, appropriate checks and balances must be put in place to ensure that people with dementia are given the proper quality of care in all hospitals. Further, it should become standard practice that the demands of someone with dementia should be listened to. It is incredibly important that we get better at listening to what they, and their families, are saying. Dementia is a complex illness, and it is often difficult to assess its onset. Whenever possible, however, conversations should be held with the individual and their loved ones about what is happening and the process that is involved. Such conversations would be useful in helping the family through the process.

Dementia is now one of the top five causes of death in the United Kingdom, and it is disappointing that the health and wellbeing boards are being a little slow to consider people’s needs. About 800,000 people in the UK have dementia, and that number is going to go up. It is said that more pressure is being put on the national health service. I do not think that is right. I think that we are making enormous strides in order to deliver better health care for our elderly. It is because we want to do more that our national health service is facing increasing levels of challenge.

For those with dementia, the changes to long-term care are crucial. I am delighted that the Government are looking at trying to take forward the Dilnot report, to which I made my own submission—I have a copy here or I could e-mail it to the Minister. That report must be viewed as a blueprint for how to go forward.

There has been increasing debate with the Treasury since the 1940s. Let me remind everyone of what happened in 1947 when the national health service, of which we are all very supportive and proud, was first set up. The other half of the equation was long-term social care. Over the last 10 or 15 years since I was a candidate for Plymouth, Sutton as it then was—it is now Plymouth, Sutton and Devonport—I have spoken about the divorce of social care from the national health service. If I have a heart attack or have cancer, I will have to deal with it one way, but if I have Alzheimer’s, Parkinson’s or dementia, it will be considered to some extent as being a separate challenge. I believe that we need to bring the two much closer together.

I have some concerns about using insurance. Every time I have had to make claims—on my car insurance, for example—I have always had some difficulty with my provider. We need to look at that, but we need to ensure that people do not see all their savings just disappearing into a black hole. That is something that we need to deal with as a country. There is a danger that the amount of money individuals are asked to pay for their care will remain far too high. We cannot hide from that in our ageing society.

At the beginning of my time in the House, I wrote a paper on the strategic defence and security review, in which I said that there were two important matters of which we needed to take notice. The first was that more money needed to be put into defence—I continue to say that—but the second was that we should devote more money to long-term care for the elderly. That was my No. 2 priority; it has to be incredibly important.

I welcome the Government’s decision to take on the global health challenge—a priority after years of neglecting this growing problem. I welcome the Prime Minister’s commitment and the leadership and extra support he has provided for people with dementia in carrying out their everyday tasks. That shows a shift in the wish to combat the stigma that surrounds dementia and to achieve greater awareness of the illness. We need to learn, too, from the ethnic minority communities that tend to work much more closely together with their families in providing care.

[Mr Robin Walker (Worcester) (Con)]

My hon. Friend is making an excellent speech. I want to support his point about the Prime Minister and the issue of stigma with a quote from Professor Dawn Brooker, who helped found the Association for Dementia Studies at the university of Worcester. She said:

“Stigma and fear are the biggest enemies of achieving”

progress on dementia. She continued:

“What makes the PM Challenge so important is that it says very clearly that he is not ashamed or fearful of standing up and talking about dementia. If he can do this then it makes it safe for every politician and leader to do the same.”

I believe Members of all parties have shown the same courage in taking this issue forward today.

[Oliver Colvile]

My hon. Friend is absolutely right, and the same issue applies to mental health, about which I have also spoken at some length in this place. We need to break down these taboos and move on.

I very much hope I have not taken all the thunder of the hon. Member for Plymouth, Moor View. There must be joint responsibility between Government health boards and staff in the health service to ensure that the diagnosis of dementia and the quality of care improve significantly. In way, we can show that we are on track for the future.