Dementia

Tony Baldry Excerpts

Thursday 10th January 2013 Commons Chamber

[Hazel Blears (Salford and Eccles) (Lab)]

I am grateful for your guidance, Mr Deputy Speaker. It is a pleasure to follow the right hon. Member for Sutton and Cheam (Paul Burstow). In my capacity as vice-chair of the all-party parliamentary group on dementia—the right hon. Gentleman elevated me in his speech; our group is incredibly well led by Baroness Sally Greengross—I want to pay tribute to his work in this field. I appreciated his personal drive on this issue; it has made a big difference. I should like to thank the Backbench Business Committee for allocating the time for this debate. I should also like to thank all the Members here today. This is a fantastically good turn-out for a one-line Whip, Back-Bench business debate on a Thursday afternoon, and it indicates just how deeply people feel about this issue. The hon. Member for Chatham and Aylesford (Tracey Crouch) has been a tremendous help on the all-party group, and I am delighted to be vice-chair alongside her. Her personal drive and commitment have made a big difference.

Nearly 1 million people will be living with dementia by 2020, and the issue now touches the lives of virtually every family in Britain. It is a big issue for the NHS, but it is also a big issue for all the public services. I entirely endorse the right hon. Gentleman’s point that we have to join up the services right across Whitehall if we are going to make the progress that we need to make.

Ten years ago, when I was a Health Minister, it is fair to say that dementia was not at the top of the agenda for Ministers or for the NHS. As ever, there were more pressing issues, such as cancer, heart disease, waiting lists, maternity services—the list goes on. The voices raising the issue of dementia, and of care for older people more generally, were not heard as clearly then as, thankfully, they are today. This is now a massive challenge facing all of us, and I believe that increasing pressure from the public has helped to focus the minds of politicians and practitioners on what can and should be done to support those with dementia and, crucially, the people who care for them.

I also want to depart from normal practice and pay a warm tribute to the Prime Minister. He has put his personal weight behind this issue, and I know from having been a Minister that having the Prime Minister behind a project can give it momentum and get the system moving. It can provide a kick-start and a catalyst. I want to say a genuine thank you to the Prime Minister on this issue. That does not mean that there is not much more to do, and there are certainly concerns about ongoing funding issues, but having the Prime Minister say, “This is my challenge; I am behind it” will get things moving in the system.

Like most people, I got involved in this issue because someone I love has dementia. It is my mum. Over the past five years, I have seen and experienced the impact of that on her and on my dad, who, at the age of 83, is still her full-time carer. I want to raise three issues today. I want to talk about diagnosis, support in the community and the research challenge that we face.

My mum’s diagnosis was absolutely appalling. She had been having problems with her memory for about a year and a half and, like many people, she thought that it was just because she was getting older that she could not remember day-to-day details. However, when she could not remember the day of the week and when she started constantly to repeat herself, we as a family thought that she would benefit from a bit of expert advice.

Mum’s GP was not bad. He referred her to the mental health team for older people. She was just 70 at the time. What happened after that, however, was absolutely terrible. My mum and dad received a visit from a local psychiatrist whom they had never met before. She sat herself down on the settee without any formalities and proceeded to ask my mum 10 questions about the day, the date and who the Prime Minister was—I can think of lots of people who would not have known who the Prime Minister was—and after just a few minutes, announced to my mum and dad that it was very clear that my mum had Alzheimer’s. As Members can imagine, they were stunned and upset. They had no idea what that meant for them or what the future might hold. They were frightened and bewildered.

That was just the kind of brutal diagnosis that we used to hear about in relation to cancer sufferers, but here it was happening to the people I love. Suffice it to say that, after a formal complaint, we did not see that psychiatrist again, but the incident brought home to me how many people in those circumstances are subject to such hurtful and damaging insensitivity. Better dementia diagnosis has to be a priority. Yes, this is about earlier diagnosis, but it is also about sensitivity, understanding and finding the right circumstances in which to make a diagnosis that will fundamentally affect people’s lives.

Diagnosis rates in this country are low and incredibly varied. In general, just over 40% of people with dementia receive a formal diagnosis. The lowest rate is 26%, in Dorset, and the highest is nearly 70%, in Belfast. There must be a reason for such a dramatic variation. We have made little progress in recent years towards driving up diagnosis rates, yet diagnosis is key, because without it a person cannot gain access to the support services and the help that they need.

[Sir Tony Baldry (Banbury) (Con)]

Is it not part of the problem that many GPs are anxious not to diagnose dementia because they feel frustrated that they do not know what to do following such a diagnosis? They do not know what to offer the patient, and there seems to be an inclination to avoid that frustration by not making a diagnosis of dementia at all.

[Hazel Blears]

The hon. Gentleman is absolutely right. In fact, the recent all-party group inquiry into diagnosis revealed exactly that situation, which is a real concern. Many GPs are uncomfortable about making a diagnosis of dementia. They sometimes feel that such a diagnosis is pointless if the necessary drug treatments or wraparound care and support services are not available. Increasing the confidence of GPs at that point to enable them to make a diagnosis is of fundamental importance.

The figures on diagnosis are quite stunning. Only half the GPs questioned said that they had sufficient training in this area, and a third of them believed that a lack of access to drug treatments was a barrier to early diagnosis. Almost a third were not confident about making a diagnosis of dementia, and only a third felt that they had had enough training to go through the diagnosis process. Unless we tackle that, we will not get the increase in diagnosis that the Prime Minister and all of us want.

--- Later in debate ---

[Sir Tony Baldry (Banbury) (Con)]

I am sure everyone who listened to the right hon. Member for Cynon Valley (Ann Clwyd) describing on the radio the terrible passing of her husband will have been moved, and all the accounts she has given this afternoon are certainly appalling and unacceptable.

I want to be concise, so I shall touch on only a few key points. My first point is on training for care assistants, a topic the right hon. Lady talked about. After I was first elected to this House some 30 years ago, several years passed before I first heard the word “Alzheimer’s”. At Christmas I would visit nursing homes in my constituency, and they were mostly full of spry widows in their 70s, but it is now impossible to get into a nursing home or residential care home in my constituency unless one is suffering from severe Alzheimer’s or dementia. As a consequence, many more people with mild dementia are now living at home in the community, being looked after by carers.

We must greatly expand the number of care assistants in three environments: first, in hospitals. If we are to have a graduate nursing profession, we also need to ensure that caring assistants see that they have a vocation— that they are part of a profession and they have a set of skills. We also need to ensure that there are sufficient well-trained and motivated care assistants in nursing homes and residential care homes. For a long time nursing homes would recruit staff from overseas, very often from India, the Philippines or eastern Europe. They would train them, and then in due course those people would go and work for the national health service. Because of various changes to migration policy, however, that is no longer possible. Thirdly, we have more people with dementia and mild dementia living at home, and they also need proper care and support from care workers.

I raised this issue with Ministers earlier in the year, and my hon. Friend the Member for North Norfolk (Norman Lamb) kindly gave me a comprehensive response:

“We are doing lots of work with the sector to grow the workforce. We are, for example, aiming to double the number of social care apprentices to 100,000 by 2017 and expanding the current care ambassador scheme to promote a positive image of the sector.”

I have to say that I do not get the feeling that there are currently 50,000 apprentices in the social care or care worker sector, and I do not get a sense of there being many social care apprentices in my patch. That may be because they are not promoted as such, and how does one recognise a social care apprentice or a qualified social care worker in a residential care home or hospital?

The Minister rightly says that the Government acknowledge the importance of training and qualifications in supporting workers in their roles and in improving the quality of care services, and the Government are spending £285 million each year on training and developing the care worker work force. This may just be my view, but, again, I do not get a sense of how that is being demonstrated in outputs. I say to the Minister that we need a clearer focus on the training and development of that work force. We have made nursing a graduate profession but we must also ensure that those who are not graduate nurses—care workers in our hospitals, in our nursing homes and in the community—have a similar sense of vocation and similar training and apprenticeships. They need to be recognised as qualified care workers, and we must continue to invest in that work force.

As the right hon. Member for Cynon Valley said, compassion is key to all of that. When my mother and her generation trained as nurses, they saw compassion as an essential part of their vocation; that was inherent in being a nurse.

[Alison Seabeck (Plymouth, Moor View) (Lab)]

I wish to give a further anecdote. My mother trained as a nurse and she said to me that on the first day in her job she was taken by the matron to the bed and told, “This is your world. The patient, and nothing else, is what you are there to look after. I want to know exactly what is happening with each and every patient in your care.”

[Sir Tony Baldry]

That was absolutely the case. There are occasions when one is just going to be out of touch on this, but hospitals are changing. When I was young, my father was a consultant and he had three wards. He was responsible for them and each had a sister, who was identifiable and accountable, as were the staff nurses. Everyone was accountable and everyone knew what was happening. Hospitals are changing, and in some ways medical technology means that things move a lot faster: for example, hysterectomies can now be day cases. However, people are staying longer in other parts of hospitals. As my hon. Friend the Member for Chatham and Aylesford (Tracey Crouch) said, a large number of people in hospital are also suffering from dementia, and hospitals, as well as treating the acute problems of such people, need to respond to that. They need to work out where those people go once they leave the hospital. Very often someone’s dementia is not spotted until they are in hospital.

[Mrs Madeleine Moon (Bridgend) (Lab)]

My mother, too, was a nurse. Sadly, at the end of her life, she ended up in hospital far too frequently, and at the very end she also had dementia. She would say that the nurses would never have been allowed to work on the wards that she worked on, because they treat conditions, not people—that is the problem. They no longer see the person in the bed; they see only the condition. Until that focus moves back to the person and their needs, and away from the condition and the diagnosis, we will not get the change we desperately need.

[Sir Tony Baldry]

I entirely agree with the hon. Lady. Many of us took part in a Westminster Hall debate earlier this week on palliative and end-of-life care, when similar points were made. Sadly, all too often, what we read in our national newspapers demonstrates the desperateness that is occurring, as does the fact that the right hon. Member for Cynon Valley received 1,000 letters and e-mails in response to her tragic circumstances. This culture change in nursing needs to be reversed, because we must get compassion back into the NHS.

The second point I wished to discuss was carers, as I co-chair the all-party group on carers. It is estimated that 670,000 people in this country have dementia and the number is due to double in the next few years. As has rightly been said, most of us will either suffer from dementia or will know someone who will be a sufferer and so will be a carer at that time. One frustration for carers is that they do not get recognised as being carers, which is extremely frustrating, particularly when they are dealing with the GP of the person they are looking after—their loved one. I intervened on the right hon. Member for Salford and Eccles (Hazel Blears) to say that part of that frustration has arisen because GPs have been slightly in denial about people with dementia, because they are not sure what to do with them when they make the diagnosis.

However, I am pleased that the National Institute for Health and Clinical Excellence has proposed that GPs should follow three new indicators on caring for people with dementia. First, GP practices should be examined on the

“percentage of patients with dementia with the contact details of a named carer on their record.”

GPs must, therefore, diagnose someone with dementia because otherwise they will not know that they have a carer on their record. The second indicator is:

“The practice has a register of patients who are carers of a person with dementia.”

The third indicator is:

“The percentage of carers (of a person with dementia) who have had an assessment of their health and support needs in the preceding 12 months.”

There was criticism in some of the national press of the Prime Minister’s determination to ensure that people get a proper diagnosis of dementia if they are suffering from it, but unless people get such a diagnosis—unless GPs face up to the fact that their patients have dementia and start to care also about the carers of these people, by making sure that they get carers, assessments and so on—we will never get the qualitative and quantitative changes in how society is run to allow us to face up to a revolution, which has happened in the lifetime of many of us, in the number of people living in our society with dementia. This issue is going to grow.

I was very impressed by what the right hon. Member for Salford and Eccles said about Salford being a dementia-friendly community; many of us must go back to our constituencies and look at the challenge dementia poses, because, in comparison, my patch is simply in the foothills of that. Over the next few years, we will all have to try to make sure that we have dementia-friendly communities.

[Bob Stewart (Beckenham) (Con)]

I meet a lot of carers. I do not have the experience that some hon. Members have, but the one that struck me about so many of these carers is that they are deeply dedicated. It would be really good if they could be considered more professional. After all, we think of doctors as being in a profession, and nurses definitely have a profession. There is now a requirement for a profession of carers that is widely recognised and accepted in society. Does my hon. Friend think that that has merit?

[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.