Diabetes (Young People)

Paul Burstow Excerpts

Wednesday 15th September 2010 Westminster Hall

[The Minister of State, Department of Health (Mr Paul Burstow)]

I congratulate the right hon. Member for Knowsley (Mr Howarth) on securing the debate and, indeed, on taking part in last week’s debate. He has brought a sharp focus to an issue that is often not debated—even when we discuss diabetes, it gets rather lost in the broader picture.

I have a constituency interest in the matter. Before the general election, a number of children in my constituency who were supported by Diabetes UK wanted to make me aware of what could be done in schools and families to support them better. There are beacons of hope and places that are doing exceptionally good things that make a huge difference. However, as has been well documented in the debate, there is clearly a lot of work to be done. I have a lot to say in response to the very many good points that have been made in the debate.

It is helpful that the debate is not just grounded in the technicalities of the issue, but grounded in the life experiences of individuals. We have heard such points made by the hon. Member for Mitcham and Morden (Siobhain McDonagh), the right hon. Member for Knowsley and, of course, my hon. Friend the Member for Torbay (Mr Sanders), who has direct experience of the matter. That is powerful because when it is done well, it helps to give a real sense of the difference that can be made to a person’s life—they no longer have to be defined by the condition; they can get on with their life. I hope we share that goal as we discuss how to shape services going forward.

I pay tribute to Diabetes UK and the Juvenile Diabetes Research Foundation, which, through the speeches of hon. Members from all parties, has contributed to the debate and does much well beyond that. This is a welcome opportunity to focus on a condition that does not get the same headlines as cancer, cardiovascular disease or, for that matter, type 2 diabetes. It presents a threat not only to children’s health but, as we have heard in the debate, to their well-being and, in turn, that of their families.

The debate has rightly focused on what we can do to improve matters. The right hon. Member for Don Valley (Caroline Flint), who understandably has had to leave to attend to other business, raised a few points with a policy emphasis that were rather churlish, but I understand that they were well meant. I am sure that she and I will have an opportunity to debate those on another occasion.

[Mr George Howarth]

I am loth to rise to defend my right hon. Friend the Member for Don Valley (Caroline Flint), on the grounds that she is more than capable of defending herself, but the key issue that she raised was not too party political; it was about how young women are viewed and how they respond to the pressures to conform to a particular body shape.

[Mr Burstow]

I will come shortly to the point, which was absolutely well made, and certainly line up with the right hon. Lady’s comments on that. As has been mentioned, the Minister for Equalities has done a sterling job on behalf of the Government to place the issue at the front and centre. She has not resiled from the issue and will continue to pursue it as she has done so far. I was more anxious about that concern being aligned with the Government’s direction of travel on GP commissioning, which I will return to because it was raised, quite fairly, in the debate.

We have heard today about type 1 diabetes—a complex, lifelong, progressive condition that requires careful long-term management to prevent the severe and sometimes fatal complications that have been described. A 2009 survey of children with diabetes in England revealed that 23,000 children and young people currently have type 1 diabetes. There has also been a national diabetes audit, which included a separate report on paediatric diabetes that gives us a fair picture of the extent of childhood diabetes and how well it is being managed. Although Britain has one of the highest numbers of children diagnosed with diabetes in Europe, we have one of the lowest numbers of children controlling their diabetes well, and we have heard what the implications can be for those children and their families. That is extremely worrying, because poor glucose management increases the chance of the child experiencing complications. I echo the view, expressed by many Members in the debate, that that is an area where we can make significant and sustained improvements. I want to describe what we are trying to do about that.

The first question is: how can we ensure that more children receive an early and accurate diagnosis of diabetes? The challenge for GPs is that type 1 diabetes can be difficult to spot. A child might present with the vague symptoms of extreme tiredness and weight loss, which can be mistaken for other illnesses. Type 1 diabetes is quite rare, so GPs might not come across many cases in their practice. That explains why there have been instances of the sort that have been described today: tragic cases of symptoms being overlooked and children diagnosed only after becoming seriously ill.

The National Patient Safety Agency is currently looking at a number of reports of misdiagnosis and delayed diagnosis and is working with the national clinical director for diabetes to look at what we can do to improve diagnosis rates and reduce emergency admissions. Clearly, we will have to look at protocols and how they might serve as a tool that can be used, but we need to ensure that the work is properly concluded before we decide whether that is an appropriate mechanism.

It is true that building professional awareness is key to improving diagnosis rates. We need GPs and A and E staff, in particular, to consider diabetes as a possibility when they see children with appropriate symptoms, and we must ensure that they are equipped with a range of diagnostic tools to do so. NHS Diabetes, the improvement body for diabetes care, is working with various royal colleges and other bodies to improve professional standards and ensure that best practice is reflected in their training curricula. NHS Diabetes is also working with Diabetes UK to publish best practice guides on how a child with type 1 diabetes should be cared for. Therefore, material is being generated that will help a wide range of professionals not only in the NHS, but in education and social services, to recognise the symptoms and understand what good care looks like. In addition, the Juvenile Diabetes Research Foundation has been placing posters in GPs’ surgeries, highlighting the signs and symptoms to help people recognise the condition.

Once diagnosed, children need a combination of high-quality clinical care and wider support to ensure that they manage their diabetes effectively. I concede that across the NHS we have a mixed picture, as has been well described. That is the picture the Government have inherited, and we are determined to improve it. Children with diabetes often need multiple referrals to different specialist services, so well integrated multidisciplinary care is crucial to service delivery.

The right hon. Member for Knowsley broke the ground for the building of the centre in Aintree that he described, which I understand will bring diabetes clinics closer together and make it much easier to access those services. We want to see more such centres of excellence. I welcome that development but stress, rather as he did, that too often the focus is on how many hospitals, doctors and nurses there are. Beds and buildings are not as important as good services, particularly when it comes to managing long-term conditions such as diabetes, as well co-ordinated and well thought-out services that are closer to the patient and can respond to their personal circumstances and fit around their lives will meet their needs better.

[Barbara Keeley]

While preparing for the debate, I noted that my right hon. Friend the Member for Knowsley (Mr Howarth) and the hon. Member for Torbay (Mr Sanders) are lucky enough to represent the two parts of the country where integrated health and social care is thought to be working the best. While talking with the King’s Fund the other day, I learned that there are only six places in the country where it is judged to be working that well. On GP commissioning—several Members touched on this point—how can the Minister ensure that that will improve, because our fear is that that major, top-down reorganisation will mean that those five or six places will be the only ones in the country?

[Mr Burstow]

Had I turned to the next page in my brief, I would have reached an answer to that question, so I will come back to it in a moment. My final point about care is that the latest paediatric diabetes service survey suggests that the picture is improving. It is important to stress that there is movement in the right direction, but there are still deficiencies.

On the question of GP commissioning and how we better integrate the commissioning and joining up of services, a point that the hon. Lady and others have missed in much of the commentary on the White Paper is the clear intention for local authorities to hold a new role in assessing population need. That assessment will be critical to the future of the commissioning of health and social care and to the new role of local authorities in public health, which is key to early prevention of type 2 diabetes. The notion that there is fragmentation and atomisation is far from the truth. The intention is to ensure that we have that alignment of services, which would be much better achieved through the partnership between local authorities and GP consortiums.

[Mr George Howarth]

I recognise the problem to which the Minister refers, but Knowsley primary care trust and Knowsley council, for example, already have a number of integrated posts; the chief executive of the PCT is also the director of social services. The process that the Minister is seeking to create through the reforms to a large extent already exists in places such as Knowsley, yet it seems that they will undo what has already been created.

[Mr Burstow]

As the hon. Member for Worsley and Eccles South (Barbara Keeley) has already said from the Front Bench, that is not the norm but the exception. We want that to become the norm. The point is that that has not happened everywhere. We need approaches that ensure that we design services in ways that involve all the key players, including clinicians and local authority social services, where appropriate. That is the ambition of the White Paper.

We want to unleash the potential of GPs by aligning them much more closely as commissioners with the services. I note that the Juvenile Diabetes Research Foundation supports the White Paper and sees it as a key way to lever the changes that Members have argued for in the debate. It sees the reforms as an opportunity to secure things that are not delivered under the current NHS architecture, such as insulin pumps, and I certainly wish to ensure that that happens.

[Mr Howarth]

I apologise for making so many interventions, but I want to make this simple point. One of the consistent themes in this debate has been that the weakest link in the system for treating young people with diabetes is the service that GPs provide, particularly in diagnosing diabetes in the first place. I cannot see the logic, from a diabetes point of view, in handing all the power and control to people who do not understand the disease.

[Mr Burstow]

The right hon. Gentleman and the Juvenile Diabetes Research Foundation seem to be in different places. The foundation takes the view that the condition is best managed through primary care. As I said, we must upskill, ensure that the signs and symptoms are better understood, and use the clinical skills of GPs more effectively.

[Barbara Keeley]

Will the Minister give way?

[Mr Burstow]

I will give way in just a moment—I want to pick up on another point. I am surprised that the hon. Lady keeps going on about GP commissioning, when it was her Government who introduced practice-based commissioning. We are building on those reforms, and see them as an essential way of ensuring that taxpayers’ money is most effectively geared to delivering the best possible health outcomes for people with diabetes and other conditions.

[Barbara Keeley]

I do not think that Opposition Members are alone now that the Royal College of General Practitioners has expressed major concerns about GP commissioning and is pleading with the Health Secretary to put the reforms back.

I want to raise a point about local authorities and coterminosity with PCTs. We have a better coterminosity situation—and have struggled to get to it—but I know that some local authorities around Greater Manchester will be faced with having not one but two, four or five GP consortiums. As I said, health and social care integration is working in places such as Knowsley and Torbay, where great work has been done to bring things together. The fragmentation is coming out because of the nature of the reorganisation.

[Mr Burstow]

Again, I do not recognise that characterisation, in that coterminosity does not exist in many parts of the country under the current model. As the hon. Lady has rightly said, integrated models of care, and collaborative approaches and behaviours are not present in many places. The desire and intent behind the White Paper is to make them the norm.

I want to do justice to this debate. We could have a debate about the White Paper, and I am sure that at some point the Opposition will choose to do so. If they do that, we would be only too happy to meet them point by point, but I want to talk about some of the key developments that will bear down on this problem and really help to transform lives.

The coalition Government want to make a significant move in respect of their commitment to introducing a much stronger payment system for children’s diabetes services, which will help to bring them out of the shadow of other NHS services. As a start to the process, a new mandatory tariff, which we plan to introduce in stages from April 2011, will recognise paediatric diabetes care as a clear and discrete specialism within the NHS, and will provide a clear funding stream to support such services over the long term.

At present there is a non-mandatory tariff, which was rushed in for April 2010, but it is wholly inadequate because it fails to take into account the complex nature of paediatric care, which this debate has articulated. As a result, under the current system, many paediatric diabetes services either continue to be under-resourced—we have heard about that today—or are funded through other budgets. Hence, they can sometimes be relegated to a second-class status in the NHS. The new tariff, as part of a more patient-focused funding model, will help to put us on the right track.

[Mr Alan Campbell (Tynemouth) (Lab)]

Will the Minister give way?

[Mr Burstow]

I will. The hon. Gentleman has listened to the whole debate, and I appreciate the fact that he has done that.

[Mr Campbell]

We have reached the point about money, and I can assure the Minister that the first concern of a parent of a child diagnosed with type 1 diabetes is the health of the child, not money. My hon. Friend the Member for Mitcham and Morden (Siobhain McDonagh) discussed support for families. May I ask what representation the Minister has made to the Department for Work and Pensions on disability living allowance, which is available to many families of young people with type 1 diabetes?

[Mr Burstow]

I obviously have many conversations with colleagues in the DWP, but as that is the first occasion on which that matter has been raised in this debate, and as I want to do justice to other speakers, I shall move on to ensure that I answer their questions.

Let us deal with family support more generally. The hon. Member for Mitcham and Morden took us through some of the statistics; the impacts on families’ lives are truly disturbing. We need to ensure that appropriate and tailored support services are in place, including the right support for carers.

I am concerned that where peer support services are provided, they are not given priority. However, not all peer support services need funding; they need willingness and support to ensure that they carry on. I would certainly commend peer support as one of the ways in which people can cope with self-care and the ongoing management of the conditions that have been discussed in this debate.

Let me deal briefly with emotional support for children in particular, and the children’s charter, which has been mentioned several times. My hon. Friend the Member for Torbay spoke about the impact of a diagnosis at a young age. Part of that comes back to providing proper emotional support in formal settings—schools and other settings. We must ensure better alignment in the way that we develop our thinking around public mental health strategies, and we will be saying more about that in a cross-Government strategy on mental health later this year. I am sure we will want to pick up, at least in thematic terms, on the public health issues in the White Paper that we will publish, also later this year.

I very much welcome Diabetes UK’s children’s charter, which will help to establish the kind of support that children and young people need to help them cope. Also, a guide has been developed to help commissioners ensure that children with diabetes receive the emotional and psychological care that they need.

In the last four minutes, I want to speak about insulin pumps. The right hon. Member for Knowsley rightly raised that key issue in the debate and in an article that he published today. The National Institute for Health and Clinical Excellence has clearly recommended pump therapy for children and young people if daily injections are not working. Frankly, I am disappointed and shamed that many primary care trusts are dragging their feet on making pumps available. That should have been sorted out; I should not have to come to this Chamber to explain why that has not been done, given how long the recommendations have been there. It is a pity that the delay was not challenged more in the past, and that the previous Government did not get around to sorting it out. I expect to see real improvement in this area as a result of the new funding arrangements that have been discussed in the debate.

My hon. Friend the Member for Torbay raised some important points about obstacles, and I want to ensure that, through the all-party group on diabetes, we have further conversations about what we can do to kick down those obstacles, and to ensure that the important research on artificial pancreases that is being done in this country is not undermined by the treatment not being available because there is not a route through the pumps. That point has been powerfully made in the debate, and I want to ensure that we follow through on it.

Research has been touched on in broader terms, and I want to mention a couple of examples of work that is being done at present. We are looking at how to provide better psychological support for children with diabetes, and how we can improve education and training in diabetes for children and families. We are also funding a major trial on the effectiveness of insulin infusion treatments versus standard injections. Alongside that, there is a vibrant third sector investing in research.

We have heard about work at Cambridge university to develop an artificial pancreas to reduce the risk of hypoglycaemia in children and adolescents. The link to telehealth that my hon. Friend the Member for Torbay referred to is important, and I want to ensure that the message is clearly understood and that we build it into some of the work that the Department is doing. I am about to run out of time, so I will have to write to my hon. Friend about international research.

Hon. Members raised points about schools. I shall elaborate in more detail by writing to all those who have taken part in the debate, but it is key that schools understand their responsibilities in respect of well-being and safety, and that they provide appropriate support for children who need to take medication at school.

The Government are determined to improve care for type 1 and type 2 diabetes. This is not something that we will put on the back burner. We have inherited a legacy but intend to build on and really improve those services.