I would just like to start very quickly and a bit cheekily perhaps if people are prepared. I have had diabetes for thirteen years and I see Deborah and Maggie Loughran here, as two people with diabetes, if you have got diabetes could you put your hand up? A few of you. Could I ask you to put your hand up if you know someone with diabetes? Huge numbers! We will try it the other way around. If you have not got diabetes and don’t know anybody with diabetes put you hand up. A few of you. Isn’t that a shame? Wouldn’t you like to see that a much bigger number? That just shows you what a big problem diabetes is. That is what I am going to talk to you about.

Now you have ruined my next bit because you all know much more about diabetes than I do, but for the six of you who put your hand up who don’t. What is diabetes? Diabetes is a condition, which affects the body’s ability to use glucose or sugar properly. Isn’t that easy? As a result of that you get very high levels of sugar in your blood, now a lot of people may think that you get low levels also? You don’t, diabetes causes high levels of sugar in the blood. That wouldn’t be too much of a problem would it either? Unless you think about what sugar does when you put it into a liquid form and it becomes syrup. You have then got syrup flowing through your veins and it sticks to everything. So a result of those high levels the person with diabetes is at an increased risk of serious complications, which can be fatal. I think a lot of people unfortunately are still told that diabetes is a mild condition, or you have a touch of diabetes and not to worry about it. Diabetes is a very, very serious condition.

There are two types of diabetes. Type I is the media’s darling of diabetes - if the media talk about diabetes it is Type I. Under the age of 40, normally in kids, so it is a very good press story. The body actually stops producing insulin all together and as a result the only way you can treat it is by insulin injections. I take five insulin injections a day by choice and some people look in horror and say you must have it really badly? Because I know people who only take two. You take the insulin you need to manage your condition.

As a result of the treatment you have a risk of low blood glucose sugar levels and as a result of the diabetes you have a risk of high blood glucose levels. I have been amazed actually by the similarities between talks this morning and some of the issues in diabetes care. Type I diabetes is good because you get the symptoms very quickly, you get ill very quickly and you get diagnosed and treated very quickly. Unfortunately the same cannot be said of Type II diabetes. Now type II diabetes is actually the most common type even though people are not always that aware of it. About 90 % of people with diabetes have Type II. It tends to happen over the age of 40, it’s not due to a lack of insulin in many cases, but because the body cannot use the insulin properly. The treatment initially with diet and weight loss, since about 80 % with Type II diabetes are overweight. About half the people with Type II diabetes need to use tablets and about a third need insulin. Again because of the treatment you can go low, but the general problem is high. The big problem with Type II diabetes is it takes between seven and 12 years of having it to get diagnosed. You do not have symptoms and we know that if you just look in the UK there are probably a million people walking around with Type II diabetes who don’t know they have it. They may well be people in this room who have Type II diabetes? Now if diabetes was a simple condition, it just had a little bit to do about sugar in the blood and we won’t worry about it too much, that would be fine, but the worrying fact is at diagnosis half of those people have already started to develop some of the complications of the disease.

So lets talk about the complications. It is not a nice condition; it is the leading cause of blindness in the working age population in the UK. You are two to five times increased risk of getting heart disease and that includes stroke and heart attacks. It is the leading cause of amputations other than trauma. If untreated or poorly controlled diabetes can lead to coma and death. I am here for a different reason! Up to 40% of new cases of kidney disease are related to kidney disease. So that very strong link is why I have come here to talk to you about today.

The good news is that these complications are not inevitable; there has been lots of research to show that you can actually prevent these things happening if you are diagnosed early and if you treat the condition well. Therefore what we need to do is work together to ensure people who we are concerned about, people with diabetes have enough knowledge and good enough care, so they do not become people that your association has to look after.

So let me tell you a little bit about Diabetes UK and as I said I have been quite impressed by how strong the ties are between the two organisations. You probably recognise the name of the man on the left? HG Wells the Author. HG Wells and not Dr RD Lawrence founded what was then the Diabetes Association back in 1934, so it is our 70th Anniversary this year. Dr RD Lawrence was a young man who when he was starting to train as a doctor was diagnosed with Type I diabetes. Insulin had not been discovered in the 20’s and he was therefore given a life expectancy of two years. So he went of to Italy because it was a nicer climate to enjoy his cabbage soup because that is all he could eat. Waiting to die basically. Whilst he was out there insulin was discovered in Canada and a friend telegraphed him and said “Come back to England we are going to treat you, we can save you”! He lived to a ripe old age and also then became one the first specialists in diabetes and founded the diabetes unit at King’s College Hospital. HG Wells had Type II diabetes and the two men got together in 1934 to found the Diabetic Association. Their view was that it should support people with diabetes and those who cared for them and to ensure that everyone who needed it had access to this new treatment of insulin, whatever their financial situation.

We have changed a little bit over the years; the original Diabetic Association was unique in that it attracted membership from both healthcare professionals and people with the condition. We maintained that role now, we have over a 170,000 lay members, we have one of the biggest patient organisations in Europe, but we have also have about 7,000 healthcare professional members and we think working with the two together is really important to get messages across. In 1954 we became the British Diabetic Association and we continue to challenge the accepted ideas how people with diabetes should be treated. One of those was that the doctor knows best! The Association believes the patients that have diabetes should play an active role in their own care. Promoting a patient centred approach, which the NHS is sort of caught up with in the last 15 years. In 2000 we evolved into Diabetes UK. We continue to work in the same areas. Now in some ways it is good that we have not changed our essential beliefs, it is actually sad that 70 years on we still feel we have to provide those services. That much has not really changed.

Diabetes UK each year funds about £5 million of research into the causes, cure and management of diabetes. We see that as a very important part of our work. More importantly we actually deal with the condition, we have a telephone help line, which takes about 40,000 enquiries every year from people with diabetes. We also support our 180,000 members with regular publications and events. Much as you, we lobby Government and local health bodies to ensure that the best care for people with diabetes is delivered.

Why is this so important to carry on this work? This is a very worrying slide! This is the prevalence of diabetes in 2003. As you can see some areas have a prevalence of 9% of the population have diabetes. In some areas especially sub Sahara in Africa it’s less than 2 and a half %. That’s normally because they actually die before they are diagnosed. They just are not recognised as existing. Diabetes is on the increase as we heard earlier today; you might have read the stories about the diabetes epidemic? Figures are set to double in the next 10 years. I’ll slightly challenge Dr Donoghue’s figures we think 150 million people who are actually diagnosed with diabetes, that’s five % of the worlds population. So we are expecting by 2025 300 million people with diabetes worldwide. Massive health problem! Sadly we know that that link isn’t so much to do with type I diabetes, it is to do with Type II diabetes. That’s because Type II diabetes is linked with lifestyle. As we all move to a more Westernised lifestyle, a less healthy diet, less exercise, becoming bigger, diabetes is increasing dramatically. Obesity which we read about every day in the papers is a major cause of Type II diabetes. In fact it is such a strong cause of diabetes that I said Type II tended to be over the age of 40, we are actually seeing it in children as young as seven. Purely because they are so overweight and there are propably15,000 children in the US under the age of 10 who have Type II diabetes.

Now if you are 40 and get Type II diabetes then you might have 10 years before you develop the complications, you are in your 50’s and 60’s. Perhaps you might expect something to go wrong with your health by then. If you’re diagnosed at seven, do you really expect to be going blind, or getting kidney failure at 17 purely because of your diabetes? If we go back to the fact that 40% of people presented with new kidney disease or diabetes related, if we are going to double the number of people with diabetes and we are going to see the same increase in kidney disease? What is that going to do for already an overstretched resource that you have been hearing about today? I think the important message that the steps taken to prevent kidney disease are the same to prevent heart disease, diabetes and the same steps to prevent some cancers. We really need to get this public health messages about losing weight, being more active and a healthier diet out there.

Just like you we have lots and lots of paper thrown at us by Government agencies, we also have a NSF, which came out a little bit before yours and we have now got both parts there. We also have guidance from NICE. It is really good that governments recognise the importance of diabetes, but I found this quote on your website which said, “ We are disappointed that the NSF lacks enforcement of the implementation of these standards” and we know that the document lacks targets and costing which would have been enabled the NKF to hold the Government and service providers to account.” I think Diabetes UK would have exactly the same concerns about the diabetes NSF, there only two targets in it. One for eye screening in 2006 and one for registers which I think we have already spoken about how important they are. These are worthy towels that sit on the shelf and the only way to get them in and working is patients pushing them. Diabetes UK very much lobbies to get these pieces of paper actually into practice.

So what are trying to do to stop our patients becoming yours? We are a big information provider and as Dr Donoghue said earlier, information is probably a real key to any sort of preventable treatment of chronic condition like diabetes and renal disease. We pride ourselves on our information; these are a few things we produce. Just like with kidney disease, if you have diabetes you live with the condition 365 days a year. In diabetes and I know it is slightly different depending on how your kidneys disease is treated but in diabetes I only see a medical person about my diabetes for one afternoon a year. So that is three hours if I am lucky. Probably about an hour of that is probably spent sitting around in the waiting room. So for the other 364 and half days it is my responsibility to deal with my condition and I am sure it is the same for many of you? The only way you can do that is if you know what you are doing. So we find information provision education very very important parts of our work. 500,000 people read our magazine Balance every two months. That is great, it gives us an opportunity to get messages out there, such as the risks which are associated with diabetes. We also produce information for the newly diagnosed and we are trying to get to every Primary Care Trust in the country. When you go to your GP, instead of being told as many are now you have got a touch of mild diabetes, phone the Diabetic Association and they will send you a diet sheet. It happens on a regular basis, but we will have information at the point of diagnosis. The other thing is there is also an NKF leaflet and we do not want to re-invent the wheel, so if somebody phone us up and is having problems with renal disease we actually point them to other charities and other people like you. It is okay giving people with the condition information but it is no good if the healthcare professionals don’t know anything about it either. So you need to educate the healthcare professionals also. We are lucky in that position because we have healthcare professionals on board as members to work with them. .

80% of people with diabetes are treated in primary care, which is great it is the most local service for them, but unfortunately not all GPs or the nurses who run the clinics are diabetes specialists. Strangely I have Type I diabetes, which is very simple to manage, I take insulin and watch what I eat. I don’t have any complications, touch wood, so far. A doctor/GP will not touch me because I am on insulin. So he sends me to the hospital, but he will look after someone with Type II diabetes on three drugs for their diabetes, three for their blood pressure, something for their lipids. They have already got background eye disease and perhaps background kidney disease, but the GP can cope with them and it is a bit of a strange thing for them with specialisms. The most appropriate people are not seeing people. So we are trying to encourage people to know what they are dealing with and refer them onto specialist services.

So is diabetic renal disease actually inevitable and what steps can we take to prevent people with diabetes becoming people with kidney disease? A slight aside - diabetes full name is diabetes mellitus which means a honeyed fountain as opposed to another condition call diabetes insipidus, which means a tasteless fountain. Long before I became a nurse the diagnosis for diabetes was to actually taste the urine and if it was sweet you had Type I and if it was not you had Type II. Thank God that things have moved on from there. What we do know and what has moved on is that we have done a lot of research to show that good control of blood pressure and blood sugar levels can reduce your risk of diabetic kidney disease by up to 30%. It is quite hard to achieve those targets, but you can reduce kidney disease.

So first of all you need to make sure that people know that it is possible, actually a step before that you need to let people know that they are at risk of diabetic kidney disease. If you have been told by your GP you have touch of mild diabetes, go home and lose some weight, why are you going to any responsibility of having an annual review to have things screened? You are not! So you have to realise the seriousness of your condition, once you know that and you have the information to demand screening you need to make sure that you have it done. We recommend that everyone gets his or her urine screened for albumin urea at least once a year. We know in many places that does not happen; they are tested for protein urea. By the time you have got protein urea you have already got renal failure starting. If you can pick it up at the micro level stage you can actually do something to reverse it. So actually just not doing the right test is causing people to slip through the net. Once you have been actually diagnosed with any first form protein urea you need to be given the appropriate treatment and we know that ACE inhibitors as we said earlier can actually prevent the onset of diabetic kidney disease, but not everyone is given those. Many patients with Type II diabetes who don’t have any early signs of kidney disease may not be given an ACE inhibitor as a first choice antihypertensive drug if they have high blood pressure and if they were given that not only would it treat their hypertension but it could protect their kidneys from further damage. So it is making sure the right treatment is given to the right patients at the right time.

The only other thing we need to do is research and as we said we spent about £5 million a year on research and about half a million of that was spent just on education which I think is very important. It is not just about cures, it is about day-to-day living with the condition. If anybody knows what any of these are please tell me? These are some things that we are currently funding in the area of diabetic renal disease. It doesn’t really matter what each of them are individually and some of them might be very specific studies and that doesn’t matter either, what we are trying to do is to bring lots of small pieces of the jig saw puzzle together so we can actually find a cure or better treatments, so each of these though they may be very specific add something to the whole picture and helps us move forward with this. It is a very important moves that we are trying to make to stop our patients becoming your patients. We were talking about the European Kidney Federation, there is an International Diabetes Federation and a very active European one and this was the poster that came out last year from the International Diabetes Federation, just raising awareness, as I said if people don’t know that they are at risk why will they take any care? So it is really good news that there are active steps being taken to raise awareness of this condition for people with diabetes so it can be prevented.

Prevention doesn’t always work - we wish it did it would be lovely if these prevention messages could prevent people getting renal failure, unfortunately they won’t. There will always be people who get through. So what can we do to stop or to improve or to make sure that it works whatever care people have. I think the most important thing is to ensure that people don’t get lost between the two conditions. Unfortunately as we said earlier the diabetes team and the renal team often sit in totally different buildings, let alone share the budget or even speak to each other. We know that a lot of patients whose diabetes care has been managed and then they go on to renal failure and are shuffled off to the renal unit and they are never seen again back in the diabetes unit they sort of disappear into a black hole, which is great for their kidney disease but rubbish for their day to day management of their diabetes. We really need to make sure those two work and I think a very interesting point that was raised earlier was that these are not patients these are actually individual people, these are us. It shouldn’t be the person with diabetes or the person with the kidney disease it should be Simon or Deborah or someone whoever gets the care that they need in the most appropriate place.

Another issue that comes up is actually making sure that treatments for one condition don’t interfere with another. I know one problem that comes up quite regularly is with peritoneal dialysis that the glucose solutions used to achieve the dialysis actually raise your blood sugar levels, so you have to measure insulin doses into bags to get that balance right. So it is making sure that the two teams are talking to each other and not prescribing things that actually go against each other. I think as Dr Donoghue said earlier this morning we really need a cultural shift to bring about a better integrated care all round. Getting healthcare professions actually to work closely together, they are both specialist areas, which is good since we need specialist knowledge. We need them to talk to each other much more. It is really good see that there are initiatives to do that. A member of my team from Diabetes UK sits on a joint panel looking at anaemia in diabetic renal failure, there are diabetologists and renal physicians on that and that’s great but we need to really make sure those messages and that working with the relationships carries on. Finally I think Diabetes UK can do a lot more to work a lot closely with yourselves to ensure that our joint messages get across because from today it is so obvious that we have so many joint messages. To ensure that we are referring people through to you and vice versa when they actually need help they need.

To sum up Diabetes UK are already doing a lot to prevent our members becoming your members. I don’t want to ruin your membership but we would like to hold on to ours and stop them needing you. There is still a great need for better education, better communication and putting the individual at the centre of their care and I think it is really important with the conference title Time for Quality Time actually is the time for quality time. We have got the basics in place, we need to have better working relationships. Thank you very much!

(Click here to go back to the summary page for this speech).

Next >>Maggie Loughran - Patient Speaker (Detailed Report)