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Dementia Services (Gloucestershire)

Volume 557: debated on Tuesday 22 January 2013

In the dementia debate in the House a fortnight ago, sadly I was tail-end Charlie and time prevented me from contributing a Gloucestershire perspective, so I am very grateful for this opportunity to put that right. I am also very grateful to the Minister for coming to Westminster Hall this afternoon.

Dementia can be an emotional topic. In that earlier debate, many Members—mostly female Members—from all parties in the House talked about the very human side to the disease. It was a reminder that we are no more and no less than a reflection of those we serve; a mirror of the human sadness and strength that are part of the disease of dementia. Perhaps it is not given to men to be as open or as eloquent as women in discussing our experience of family suffering. However, I will embarrass my father briefly, for he looked after my mother at home through many years of dementia. And after my mother’s death, when I said that I could not have done what he had done, my father replied quietly, “You never know what you can do until you have to.” It falls to our generation to “have to” do something about dementia, before we too—one in four of us, including one in four of us in Westminster Hall today—are overtaken by this disease.

In Gloucestershire—an ageing shire—the need is even more pressing. So there are three areas that I would be grateful to hear my hon. Friend the Minister’s views about in this brief debate, and two on which I would like to share our practice in Gloucestershire. Then I will finish by issuing an invitation.

The first area is research. It is good that Government research expenditure has doubled, and that the Aricept brand of new drug can delay the speed at which the disease spreads. However, although that is valuable—not least for giving families a chance to plan—Aricept may not work for much more than a year. Furthermore, although the Government have recently invested £22 million in research into 21 new products, can my hon. Friend the Minister confirm that it may be years before we know if any of them are successful? Since the goal of a cure is such a precious one—way beyond even the estimated heavy financial cost of treating sufferers, which is about £19 billion a year—can he also say if any drug development is close to the stage where the NHS could really financially back its development? On this issue, surely everyone would love to see science and Government working together to back a winner.

I will intervene, if for no other reason than to give the hon. Gentleman a chance to catch his breath.

In Northern Ireland, dementia diagnosis is at 63%, which is well above other parts of the UK. The support services are not as high; in other parts of the UK, support services are much higher than they are in Northern Ireland. Does the hon. Gentleman agree that it is time there should be a UK strategy that takes all the diagnosis and support services together, and that develops a strategy not only for Gloucestershire but for Northern Ireland and the rest of the UK?

I am grateful to the hon. Gentleman for that intervention. I know his constituency well, and I am sure that there are points on which we could exchange information. My hon. Friend the Minister will have heard and noted his comment: it is probably a subject for a separate debate, and we may come back to that issue another day.

Secondly, I want to talk about diagnosis. Currently, less than half of people with dementia in England are formally diagnosed with the disease, even as dementia affects more of us. Gloucestershire is the county with the highest number of people with dementia in the south-west, and it has one of the highest diagnosis rates in the region. However, although the number of people diagnosed with dementia in Gloucestershire rose by 12% last year, to 4,037, another 4,800 people in the county are thought to have the condition but have not yet been diagnosed. Consequently, although the diagnosis rate of our primary care trust is good regionally, at 46%, one can see that we have a long way to go in absolute terms, especially if the county council is right that our population of people over the age of 75 will increase by 30% by 2022.

Where is the best practice currently in the country? Could my hon. Friend the Minister tell us from whom we can learn best how to drive up diagnosis rates within tight budgets? As the Alzheimer’s Society says, low-ish diagnosis rates prevent sufferers from accessing support and medical treatments that can help them to live better with the condition.

The third area is care. In the main debate in the House a fortnight ago, other Members spoke about the link between dementia and care, and about the growing need for a “fair” solution to the problem of caring for an ageing population. Again, it falls to our generation to resolve this situation. Across the country, the number of people over the age of 65 is set to double during the next 20 years, and in counties such as mine the rate of growth will be worse, and faster.

I know that, in the wake of the Dilnot commission’s proposals, the Government will make formal proposals shortly about how they believe this issue can be settled. I wonder if my hon. Friend the Minister can say anything today about whether dementia will have a part in that process, and whether it will perhaps encourage the speed of implementation of the plans that the Government are considering.

At the same time, will my hon. Friend the Minister join me in congratulating Gloucestershire county council for entirely ring-fencing its budget on adult social care during these difficult years of local government spending freezes? In the last debate in the House on dementia, we heard from several Members whose authorities were not doing that, and it would be interesting to know how many other authorities are doing the right thing for the most vulnerable—a group that definitely includes dementia sufferers—as Gloucestershire has been doing.

I have promised to mention two local initiatives on dementia, as I believe they show that Gloucestershire may be leading the way. First, I pay tribute to the development in Gloucestershire of the community dementia nurse, or CDN, service, which was launched in December 2011 by the 2gether NHS Foundation Trust. The CDN service provides specialist and direct dementia support to GPs, with each surgery in the county being allocated such a nurse.

Secondly, we are fortunate to have a local charitable foundation, the Barnwood Trust, and it is working closely with the Gloucestershire clinical commissioning group, which has won £500,000 from the NHS dementia challenge to create dementia-friendly communities. That means having community workers who are trained as dementia link workers—people who are connecting to local communities.

On that point, does my hon. Friend agree that it is quite often the local voluntary community groups such as the Mickey Payne Memorial Foundation, which was set up by my constituent Caroline Dearson, that are leading the way in spreading best practice, support networks and awareness within their communities?

My hon. Friend is absolutely right. Community groups, such as the one in her constituency that she has mentioned and championed, are exactly the groups of people that are driving forward best practice at the local level. Of course, if they are able to win funds from the NHS dementia challenge then so much the better, because those funds would enable them to spread their good deeds further.

In Gloucestershire, we also benefit from local charities. The Guideposts Trust’s dementia web for Gloucestershire is a web-based support site that provides information for people with Alzheimer’s and other forms of dementia. We also have two very good-value day centres, one run by Age UK Gloucestershire and the other by Gloucester Charities Trust. They enable people to stay in their own homes for longer, while at the same time enabling them to meet friends and access general facilities, and enabling their carers or loved ones to leave them safely for a couple of hours while they go shopping.

Lastly, there is a very helpful purple butterfly recognition scheme for dementia sufferers that the Gloucestershire Hospitals NHS Foundation Trust has introduced in both its hospitals, Gloucestershire royal hospital and Cheltenham general hospital. Therefore my constituents are benefiting all round from an increasing range of services and ways of managing and dealing with dementia better.

However, that is not to say—as my hon. Friend the Minister will understand—that all is perfect, or that we are necessarily doing all the best things that can be done. The important thing is that the barriers are down. All of us can talk openly, in my county and across the country, about dementia. There is no stigma and no shame, just shared sadness and sometimes that surprising strength that I alluded to earlier.

I am sure there are other things being done elsewhere that I would like to know more about and that my constituents would benefit from. So I would be grateful today if my hon. Friend the Minister could do a favour to us all—I mean all parliamentarians—by giving some ideas of the best practice that he has noticed in different ways of handling the disease and managing the suffering that goes with it. Even if he cannot do so comprehensively today, perhaps he can do so later by letter.

Sometimes, too, our own cities and towns need to widen our eyes, stretch out beyond us and allow us to see ideas from further afield that we can bring back, and the Minister can help to steer us. What role, for example, is there for faith groups? Who is doing the best work across different ethnic minorities? Are there particular extra sensitivities, such as elderly immigrants reverting to the languages of their youth, of which we need to be more aware? What more can be done to support GP surgeries in diagnosing dementia? How can people be enabled to stay in their own homes for longer without that feeling of helplessness if something goes wrong?

Finally, like all good pitches must, this speech ends with an invitation for the Minister to visit Gloucestershire to see what is happening; to meet the Barnwood Trust and hear its ambitions and vision for what it might be able to do; and to share with us what he likes, what he has seen across the country and what we can perhaps do more of. I would be delighted if the Minister can accept my invitation, because dementia matters very much to all of us in Gloucestershire, as it does to him, and we want to continue being adventurous by pushing the boat out and actively considering new ways to help people living with this ghastly disease and their families, who are so intimately affected by all elements of it. As I said at the start, we never know what we can do until we have to do it, and we must do it.

It is a pleasure to serve under your chairmanship, Mr Robertson.

I congratulate my hon. Friend the Member for Gloucester (Richard Graham) on securing the debate and on speaking about his family’s experience—about his mother’s experience of having dementia, and about the role his father played caring for her and the strength that he gained when the moment arose to cope and get through it. My hon. Friend’s speech was moving, if somewhat breathless at the start—it was excellent to see him arriving in the Chamber just in time.

My hon. Friend is committed to ensuring that his constituents have access to high-quality care whenever and wherever they need it. He has demonstrated his commitment through his work as a member of the all-party group on dementia, which does really good work to raise awareness of the condition in Parliament and beyond.

We know that some 800,000 people in the UK have dementia, and that number is expected to double over the next 30 years. The consequences of that growth will be substantial, so we must recognise the scale of the challenge that we face. The Government are committed to meeting that significant challenge by providing high-quality care for people with dementia combined, crucially, with strong support for carers.

My hon. Friend talked about the role of carers, and we often have to stop and remember the impact on a loved one of someone getting dementia and then having that loss of recognition. We must understand how distressing it can be for someone to cope with that, and sometimes with changing and challenging behaviour, when they may have been married for a long time. We owe an enormous debt of gratitude to the army of carers who continue to give their care, love and support, sometimes under difficult circumstances. We will transform dementia services, achieve better awareness of the condition, and offer high-quality treatment at every stage and in every setting.

I will not go over much of the ground that I covered in last week’s debate because I know that my hon. Friend is well versed in many of the things we have achieved nationally. I should recognise the fact that some good work started under the previous Government, who produced one of the first dementia strategies in the world. The work that we are doing means that we are one of the leading countries on this but, as my hon. Friend said, we must recognise that there is much more to do.

My hon. Friend will be conscious of the dementia challenge that the Prime Minister announced last March, but an awful lot has happened since then. For example, we have set aside £54 million for the NHS to support dementia diagnosis in hospitals. We have asked local areas, through the NHS mandate, to set ambitious targets for improved dementia diagnosis over the next two years. Each area must understand its position on undiagnosed cases and set about dealing with the gap.

We have set aside a further £50 million to make health and care environments more dementia-friendly. We have launched a national advertising campaign to raise awareness, to reduce the stigma attached to dementia and to encourage people to contact their GP if they experience symptoms of dementia. Such contact often involves having that first, difficult conversation with a loved one about the need to see their GP to explore whether there might be dementia.

Does the Minister feel that lessons could be learned from the other regions of the United Kingdom, such as Northern Ireland, where a clear dementia care plan and strategy are in place? If the lessons learned there are beneficial for Gloucestershire and other parts of the United Kingdom, why should we not exchange information?

I think that the hon. Gentleman said in his earlier intervention that the diagnosis rate is quite good in Northern Ireland. I applaud the work that is done there, but the support services might not be as good as in some parts of England, Wales and Scotland. We are learning about these things together, and there must be close collaboration between England, Northern Ireland, Wales and Scotland. Scotland has done good work to achieve high diagnosis rates. It has also introduced the concept of dementia advisers, which my hon. Friend the Member for Gloucester talked about in relation to his county. We need to be willing to learn from anywhere and, critically, not to reinvent the wheel, so I am absolutely up for collaboration with colleagues in Northern Ireland. Just a week ago, the Secretary of State announced a year of dementia awareness to improve understanding of the condition and diagnosis rates nationally.

Let me deal with research. My hon. Friend the Member for Gloucester said that the Government are doubling the amount we spend on research, although it must be said that that is coming from quite a low base, compared with other conditions. One of the difficulties is that we cannot just make a massive increase to the amount that we spend, because building the research community’s capacity to do the work has to happen hand in hand with any increase.

There were several things I was unable to cover in detail during the recent debate granted by Backbench Business Committee because we ran out of time—my hon. Friend was a victim of that. One of them was research, on which we have genuine cause for optimism. A lot of the media narrative has been about high-profile failures of research, but there is positive and encouraging news out there.

Before I give some examples of that, however, I should mention one thing. My hon. Friend talked about the importance of the scientific community and the Government collaborating closely to meet the challenge we face. Last autumn, I spoke at a conference that brought scientists from not just the UK, but around the world, together with the Government and interest groups, such as charities that campaign on this issue. Such a useful gathering is a way of bringing the best brains to bear on this subject, so that collaborative work must continue.

On 21 December, the Government made £22 million available to 21 pioneering research projects to boost dementia diagnosis rates and to trial groundbreaking treatments. The funding was designed to cover all areas of scientific activity that are relevant to dementia across the fields of care, cause and cure, including prevention. For example, we can do a lot to prevent the condition of vascular dementia from ever starting, so if prevention is possible, we must be much smarter. We have also provided £36 million for a new National Institute for Health Research dementia research collaboration to work on better treatments and care for, and understanding of, the condition, as well as £9.6 million to expand the UK Biobank. Last year there were potentially interesting developments in treating early-stage dementia, particularly in Alzheimer’s disease.

As drug companies continue to invest in research, there is now a real prospect of a treatment within the next decade—that seems to be the time frame we are dealing with—that could have an impact on helping to slow or prevent the disorder, if it is caught early enough. For instance, there have been key recent developments from Eli Lilly, which is conducting an additional phase 3 study of a new drug for patients with mild Alzheimer’s disease. I have also heard about promising plans to expand the testing of a drug for patients with pre-dementia.

My hon. Friend rightly emphasised the importance of sharing best practice, of avoiding reinventing the wheel and of encouraging innovation, which is vital for improving dementia care. I am delighted that Gloucestershire benefited from the additional funding of £10 million from NHS South West. It is by learning from the innovative projects that he describes that we will find out what works and how we can improve services.

My hon. Friend asked me to highlight examples of best practice of people taking the lead on dementia. One involves the fire and rescue service, which has made a pledge to take action to increase the safety of people with dementia. That is a critical area, because someone living with dementia can be at risk, and the fire and rescue service can do a lot to help them to remain safe. The service has made a commitment to raising awareness among staff. Already 28 services have signed up, and I applaud them for that work. In addition, Tesco has made a commitment to increase dementia awareness and understanding among its staff and worked with the Alzheimer’s Society to produce a DVD to achieve that. The moment when a customer gets confused about change or forgets their PIN is the one when a caring and understanding approach from the checkout operator who is coping with them is particularly important. It is encouraging that companies such as Tesco are prepared to do such work.

When my hon. Friend mentioned the demographics in his constituency, that rang true for me, because my constituency, similarly, is rural with an elderly population. I am pleased that the diagnosis rate in Gloucester has risen from 40% to more than 45% in the past year but, as in many places, there is still massive room for improvement to match the best performing areas, such as Islington, where the diagnosis rate is 75%. There is an enormous gap between the best and the worst, and a long way to go. We have developed an analytical tool to support the NHS to achieve an increase in local diagnosis rates, and we are working with the Royal College of Psychiatrists to assure and improve the quality of memory services when the actual diagnosis takes place.

I join my hon. Friend in paying tribute to some of the excellent work in his area, which is in many ways mirrored by that of the Norfolk and Suffolk Dementia Alliance, which is led by an inspiring guy called Willie Cruickshank. He demonstrates the difference that can be made by bringing all parts of the system together. In his area, there is now a comprehensive, multidisciplinary memory assessment service that provides support to primary care and outreach to communities. We must ensure that we bring down waiting times, which are far too long in some areas.

Community dementia nurses and advisers are working closely with GPs throughout the country. Last week, I met a group called Uniting Carers, which is part of Dementia UK, which talked about the fantastic work of Admiral nurses in many parts of the country.

Sometimes the problem for carers arises when they reach the point at which they admit that they can no longer look after their loved one who has dementia, because it can be difficult to choose the right kind of care home or environment. The gap at such a point might need to be filled by the voluntary sector or Admiral nurses, as the Minister was describing, to help people to ensure that they are putting their loved one into a suitable and dementia-friendly environment.

I absolutely agree, and that is a role for an Admiral nurse or equivalent, or for dementia advisers, who are now in place in Gloucestershire, my own county of Norfolk, Suffolk and other parts of the country. It is of real value if someone is able to go into the home to provide practical advice to the carer and the person with dementia.

Fantastic work is ongoing to bring district councils, volunteers and community groups together to establish a network of memory cafés. The care home support team supports staff with training, development and management guidance. There is county-wide education for carers and a carer emergency respite scheme, which provides an agreed plan of personal support to the cared-for person.

My hon. Friend the Member for Gloucester raised the important issue of ethnic minorities and faith groups. At last week’s meeting, I met an Indian woman who spoke movingly about how she and her father were cast aside by their local community once he had received a diagnosis of dementia. It is critical that stigma is challenged in all communities. She also explained how her father had reverted to his mother tongue, which further complicated his care arrangements and made a difficult situation more difficult.

I want to consider how we can give specific help to people such as that woman. There is a role for everyone in society to improve the lives of people with dementia, which includes faith, community, and black and minority ethnic groups and charities. My hon. Friend is aware of the plan to sign up 1 million dementia friends by 2015, which will have dramatic effect on spreading awareness throughout the community. All such groups have a role to play in creating the dementia-friendly communities we want to see. Only through all of society—not just government—coming together will we improve the lives of people with dementia and their carers.

Regarding my hon. Friend’s kind invitation to visit, he may be interested to know that the Secretary of State and I are between us embarking on a road show to every region in the country, involving conferences and visits, to bring people together to drive change at a local level. I will certainly pass on my hon. Friend’s suggestions to the team that is planning the visits and the south-west regional event, and I will ensure that he is kept updated.

I am encouraged by the commitment shown in Gloucestershire, as in other parts of the country, to tackle the problems that we face. I was pleased to hear that Gloucestershire county council had ring-fenced funding for social care so that money is prioritised in that most critical of areas. We are expecting an announcement soon on funding for and reform of social care, and that will start to help people to cope with dementia and the costs incurred as a result of it. Although the challenge remains great, the collaborative effort demonstrated by the NHS and its partners in Gloucestershire, including businesses, community groups and volunteers throughout the county, is showing how concrete steps can be taken to improve dementia services and to enhance the day-to-day lives of people with dementia and, crucially, their carers.