Jane-Claire Judson, Director, Diabetes Scotland, is setting the scene.
“Over 268,000 now have diabetes in Scotland. There are 940,000 at high risk of developing diabetes. There are 49,000 people who have diabetes who don’t know it yet. So there are a lot of people with Type 2 who haven’t been diagnosed as yet. And when you add those figures up, you are really looking at at least one in five of the population being affected by diabetes. When you start to add in people’s families, their colleagues, the people in their life – diabetes is affecting everybody in Scotland.”
The prevalence of diabetes is now greater than coronary heart disease and over twice that of all cancers combined, Judson says. Therefore we need to start looking at diabetes as a priority for Scotland.
“We would like to look at the models that have been used for areas like dementia. Where yes, it is a clinical priority, but also we have to look at a whole-system approach. And I think we are ready to do that.”
Last year Diabetes Scotland published its first State of the Nation report on diabetes care in Scotland. At present, NHS Scotland spends over £1bn on diabetes. However, 80 per cent of this goes on managing avoidable complications – for example, through improved access to high quality foot checks, more regular retinopathy screening and an urgent focus on young people with diabetes to ensure improved outcomes for glycaemic control. While it won’t be easy, Judson says this can be addressed and key to doing so will be the forthcoming improvement plan for diabetes.
“Diabetes, if we get that right, we will get that right for a number of other long-term conditions. And that is where I think diabetes is an exemplar condition. The bang for your buck that you get for solving diabetes has a ripple effect that is not so much a ripple as quite a large wave. And that is where I think the government in the development of their new improvement plan could take a massive step forward.”
Diabetes Scotland has been working to ensure the voices of those with direct experience resound through its pages.
“We have submitted two surveys to the Scottish Government – a patient survey and a healthcare profession survey – which demonstrate the voice of people who are both receiving and delivering diabetes services in Scotland. Around 1000 voices are being represented through those surveys – about 650 patients and 350 healthcare professionals – and we have set out to the Scottish Government the things that they would like to see in the next plan,” she says, identifying issues such as hospital food and access to services as key for patients.
Scotland’s previous action plans provided a framework to work with the diabetes community, and led to successes such as investment in insulin pumps that has taken Scotland from the lowest level of insulin pump use across Europe to now hitting the 25 per cent target for young adults with Type 1, Judson explains. However, the current plan expired at the end of last year and an update that had been expected before the summer is now overdue.
“We are working with the Scottish Diabetes Group and key stakeholders to ensure the Diabetes Improvement Plan helps boards to identify and address key issues regarding care for people with diabetes,” a Scottish Government spokesperson said.
“The actions within the Improvement Plan will build upon the successes of the 2010 Diabetes Action Plan and focus on meeting the challenges we continue to face. It is due to be published before the end of the year.”
Despite the delay, the Scottish Government insists that tackling diabetes is a key priority.
“We are determined to deliver world-class diabetes healthcare and our forthcoming Diabetes Improvement Plan will set out comprehensive and ambitious improvement measures for health boards,” the spokesperson said, adding: “We are also investing around £1 million in delivering our Diabetes Improvement Plan this year, which is in addition to the £7.5 million investment in insulin pumps for people with Type 1 diabetes between 2012-14.”
“We remain positive that the Scottish Government is committed to delivering for people with diabetes,” Judson remarks. But adds that they are also keen to see a clear process set out to take us to a signed-off action plan.
“To date there has not been a wider public engagement exercise,” she says, “although we appreciate that the Scottish Government has been reflecting on the content of the surveys we produced.”
While they wait, they are keen not to lose the momentum.
“Diabetes remains a challenge. Whether the action plan is in place or not it is something that we have to deal with on a daily basis and people are managing their diabetes right now and they have to be able to do that within adequate services. I think our concerns around that are making sure we don’t lose the drive and momentum we have had in the diabetes community. And ensuring that we build on the fantastic work that has been done by healthcare professionals and by patients in their own self-management of their condition.”
This week is Self-Management Week, which this year will highlight how volunteering can be used as a tool for self-management – provoking increased skills, self-esteem and wellbeing.
Volunteers are a key part of the ongoing support provided by the Thistle Foundation, explains its chief executive, Diana Noel-Paton.
Thistle runs Lifestyle Management courses to help people manage symptoms, grow in confidence and gain a sense of control in their lives. However, she says they often find people who have completed a course are keen to give something back by volunteering, which she says can support their own recovery as well as that of others.
“It gives them a real sense of pride, and identity where they maybe lost a bit of that...And, what we’ve discovered with the programmes is how inspiring it is if you are feeling in a bad place and you are going to a programme that is being co-facilitated by somebody who has a condition and is living well with it. You go, maybe I can do that too.”
People leave their conditions at the door, she says.
“I think what makes us a wee bit different is that we are focusing on the person rather than the condition. So we often find people where they’ve maybe got more than one condition going on – which is often the case with diabetes, actually. They’ve gone and got advice about a particular element of the condition, or one condition, and actually, there isn’t anybody out there who can look and talk to them as a whole person. So they maybe get people looking at their weight, or their diet, or their smoking, or their exercise. But actually, who is this person and what matters to them. What are their priorities?”
According to research commissioned by Thistle last year, 78 per cent of people who have or live with someone who has a long-term health condition feel unable to live the life they want because of that condition.
However, Paton says their experience shows that a little bit of support can make a big difference.
“For some people, it is simply about the right conversation at the right time.”
“I think the positivity that people bring to their condition in their self-management really shouldn’t be underestimated at all. I think we can skate over that and not recognise how positive that could be,” agrees Judson, adding that if we get the care and support right and are person-centred, then it is absolutely possible to live positively with diabetes.
And she says there is a “huge amount of energy” from people with diabetes to help drive those improvements.
“We see from our survey that over 60 per cent want to spend their time engaging, to make diabetes services better. They want to tell their story... If we can capture that, and we’ve started to do that, I think, it is not just about the fact that is a nice thing to do, it can actually have an effect on people’s health outcomes.”