The All Party Parliamentary Group for Diabetes held a meeting today (4th March) to launch a report on diabetes education and peer support, something they have been looking at over the past year. If you want to learn more about this work you can read my blog: A year on diabetes education.
The great and the good were in attendance and it was a privilege to be allowed to speak before ministers responded to the report's launch.
This is what I said:
The value of structured education and the wider value of peer support
I’d like to tell you a story.
Four years ago, on the 9th March I stumbled into a doctors surgery to be told I needed to go to hospital, it was serious, it was life threatening.
I was told I had type 1 diabetes and would need to inject insulin for the rest of my life.
I went home with a condition I knew little about, no knowledge of what I needed to do beyond taking the pills and I needed to eat healthy. I felt very alone!
The following day I rang my GP surgery and because of an amazing practice nurse I started to feel supported. She spent time educating me and arranged a one day course on type 2 management. When I got my correct diagnosis of type 1 she arranged a half day carbohydrate counting course.
DAFNE
When my diabetes care moved to Sheffield, I was offered a 5 day DAFNE course. It was a significant improvement on the education I’d received at Doncaster.
DAFNE is a life changing course.
Without it, I wouldn’t have known what to do when I was ill - I’d have been hospitalised at least three times due to illness without this knowledge.
Without it, I wouldn’t know how to alter my insulin doses to enjoy hiking activities.
Without it, I wouldn’t know how to safely manage my condition when having a drink at the local pub.
Without it, I would never have spoken to some else with diabetes.
Without it, my reliance on the NHS would be significantly more and
Without it, I suspect my risk of life impacting complications would be much higher.
Peer Support and Our Diabetes
But despite the value DAFNE has brought to my self care management there are gaps and a significant one is how to deal with the emotional side. DAFNE provided me with the tools and knowledge to manage the treatment but it totally missed how to manage the emotional.
In light of this I founded (with another person with type 1) an online support community called Our Diabetes. We come together every Tuesday on Twitter, a social media platform, to discuss diabetes and each chat is hosted by a member of the community. The vast majority of chats run by people with diabetes relate to emotional well-being, titles such as.
"I had heard so much about DAFNE from getting involved with the diabetic on line community [...] and was really in a ‘muddling along phase’ with my type 1 diabetes and getting nowhere fast. It was much easier than I thought to put my name down (via my hcp [...]) and I was exceptionally lucky to be able to attend the [...] course"
“You haven’t been hugged until you’ve been hugged virtually by a stranger whose only desire is for you to not feel alone. Now that’s support!”
Our Diabetes isn’t just for those living with the condition but for everyone with an interest in it. We actively encourage healthcare professionals, charities, partners and even (dare I say it) politicians to be involved too!
In fact one chat was hosted by the chair, Adrian Sanders, and was used to obtain evidence for the report launched today. I’m very grateful to the APPG for looking at this important subject and for reaching out to the community for their thoughts, some of which you can see on the monitor currently.
The Education Act
But I’d like to end with a bit of history.
On January 19th 1944 Rab Butler's Education Act cleared its second reading in the House of Commons. It paved the way for free secondary education for all.
People wanted to believe that after the war Britain would be a better place - a New Jerusalem was the phrase of the time - a country worth fighting for.
It’s time that diabetes education should to be provided to all. It shouldn’t be for the “lucky” few.
It changes lives for the better.
It will save the NHS money.
It’s definately worth fighting for.
The All-Party Parliamentary Group (APPG) for Diabetes has spent the last year investigating the state of diabetes education. They've collected evidence from a wide variety of sources including HCPs, academics, commissioners, providers of education courses and patients to better understand the different types of learning and support available, the gaps in service and to identify reasons for low uptake when structured education is offered to individuals.
Part of the evidence presented to the APPG came from the Our Diabetes tweet chat back in August hosted by Adrian Sanders MP (chair of the APPG) with the help of JDRF UK.
Four questions were asked:
Question 1: Where do you currently look for advice & support to help you self-manage your diabetes?
Question 2: What gaps are there in the current provision of education? What other training & support would you or your family find useful?
Question 3: How should education and support best be delivered and by who?
Question 4: How confident do you feel that you know what diabetes education and support is available to you – both locally and nationally?
The evidence collected has been written into a report which will be submitted to the Department for Health and disseminated among Clinical Commissioning Groups.
So why am I telling you all this?
The report will be launched by the APPG on the 4th March at 12:20-2:30pm in the House of Commons and if you believe (like I do) that diabetes education is an important part of self-care and should be available to all, I would urge you to contact your local MP and ask if they could attend the launch. The more MPs we can educate on the dire situation diabetes education finds itself in the more chance things can and will be changed for the better. I'll give some you pointers on how you could do this at the end of the blog.
After the launch, a copy of the report will be made available to download from the JDRF website and I will update this blog with a link to it once it's available. I'm also hoping to tweet throughout the event using the #APPGdiabetes hashtag to give you a flavour of what's being discussed.
I've been asked to speak at the launch and I feel very privileged to be allowed to speak about something I care so passionately about. I would like to thank JDRF and the APPG for giving me this opportunity.
I'll be sharing some of my own thoughts and experiences on diabetes education: how it has impacted me; why I believe it's important and; why it shouldn't be something limited to the "lucky" few.
Thank you for helping put diabetes education on the agenda and thank you to Diabetes UK, JDRF UK and the APPG for all the hard work they've put in over the past year!
Contacting Your MP
For some, the first thing to do is find out who your MP is! Thankfully finding your MP is easy, you just need to visit the parliament website, enter your post code in the keyword search box and click the "go" button. You will then be presented with all the contact details of your local MP.
Many have Twitter and Facebook accounts providing an easy way to contact them, some have websites with a contact page or email address you can use to get in touch and if all else fails they will have a telephone number you can call.
Ideally it's worth contacting them via email or telephone so you can provide more detail on why it's important to you that they attend. If they can make time to attend the launch please thank them for supporting your request and if you mention them on Twitter please include the #APPGdiabetes hashtag so everyone can see who's supporting and attending.
When you contact your MP here are some facts you might like to share:
Diabetes costs the NHS £9.8 billion a year in direct costs, in large part due to complications that are mostly preventable. With approximately 98 per cent of diabetes care falling to self-care, education and support are key to the successful day to day self-management of diabetes and have been shown to reduce the risk of complications, improve quality of life and reduce the costs of long term care. However, less than two per cent of people with diabetes were recorded as having attended structured education in the last National Diabetes Audit.
If you are having trouble working out how to contact your MP I'm more than happy to help, either leave a comment here or tweet me (@davidcragg) with the problem you're having.
Earlier this year I was asked if I would be involved with a small (but growing!) group of people talking with the Parliament Outreach team about the use of social media. Since then I have attended a number of #ParliTeaCamp meetings at Portcullis House discussing a wide range of topics and, if you follow me on Twitter, I'm sure you would have seen a few tweets from me whilst attending these meetings!
These meetings have been extremely interesting and rewarding. By getting involved I've personally learnt a lot about Parliament, social media and how communities work and grow and I hope my own contributions have been useful to others too. Through this involvement I have also had the opportunity to meet some amazing people who do amazing work!
So, when the Parliament Outreach team asked if I'd be interested in Our Diabetes doing the a live tweetchat, using the "Melbourne Declaration on Diabetes" debate at Westminster Hall, I jumped at the chance.
What actually happened
Being the first to attempt something like this envitably means you hit a few barriers. We successfully managed to negotiate them with the help of the Outreach team and run the first live #ParliChat tweetchat during the debate.
The initial idea was to tweet directly from within the debating hall but unfortunately security at Parliament put the first roadblock in our way... members of the public aren't (currently) allowed to take electronic devices in the debating chamber!
Hopefully this policy will change in the future. I feel it's a great way to get people involved in (and understand) the workings of Parliament, sharing with a wider community what is being discussed there directly with the people it relates to. When filtered through mainstream media most of what Parliament does seems to gets lost...
...After all, how many people saw anything in the media about this debate? I didn't see anything mentioned and yet around 3.2 million people in the UK would have a direct interest (having either type 1 or type 2) in this debate!
Plan B involved watching the debate via a Parliament TV live stream and this worked for most, but a few people had problems accessing the stream. I'm sure lessons will be learnt from this and any issues identified will be resolved in time for future chats... and I certainly hope future chats take place.
In preparation for the Tuesday #ourD tweetchat I thought it would be interesting to take the Hansard transcript and create a word cloud to highlight the most common words used during the debate. I found it very heartening that after the word diabetes the most common word was people - after all this condition is all about people!
The debate as a word cloud - click to enlarge
Who got involved in #ParliChat
Given the time of day, I wasn't sure how much engagement we would get
during the debate itself, but I was pleasantly surprised to see the number of people joining rise as the debate continued: from diabetes consultants and diabetic specialist nurses to patients with diabetes and parents of those with diabetes; from Cardiff and Vale UHB (who are one of the largest NHS organisations in Wales - a pleasant surprise given health is a devolved power!) to JDRF UK (the largest type 1 diabetes charity in the UK); to diabetes device manufacturers and everything inbetween. We also had
Jamie Reed MP (Shadow Health Minister) and Adrain Sanders MP (who moved the debate) engage in the chat.
In total 55 people got involved, creating 315 tweets reaching an estimated audience of nearly 375,000 people and approaching one million impacts on Twitter timelines. A fuller breakdown of these analytics can be found in this pdf document.
What did I take away from the debate?
Overall I came away with a much greater understanding of how many MPs are "blessed" (as Jamie Reed MP put it) by diabetes who have a real passion and commitment to tackling the issues around diabetes as well as how much work goes unnoticed by the public.
I wouldn't consider myself a political animal and I certainly wouldn't want this blog to become one, but I do have to confess I was somewhat disappointed by the response from the government given by Jane Ellison (The Parliamentary Under-Secretary of State for Health) and I felt those in the debating chamber felt this way too as she gave way several times to MPs.
I will finish this blog by listing a few of the points raised that struck a cord with me. I would be interested to know what parts of the debate struck a cord with you by joining me on Tuesday 24th at 8pm BST in the #ourD tweetchat and/or by adding your comments at the bottom of this blog.
1. Statistics were discussed throughout the debate
Diabetes caused 5.1 million deaths in 2013 or to put it another way, "every six seconds a person dies from diabetes somewhere in the world".
Our annual intake of sugar is 33.7 kg per capita. To put that in perspective, it is equivalent to eating nearly 34 average-sized bags of sugar each year.
Up to 80% of type 2 diabetes could be delayed or prevented.
In the UK this year, 59,000 people will die unnecessarily from diabetes.
2. Many in the debate asked for a UK wide strategy
Jamie Reed: Diabetes UK [...] endorses the view that there is a clear need for a national action plan. It has identified five key areas that must be included. Those are: improvement in support for self-management; integration of care; improving safety; a focus on children and young people with diabetes; and prevention of type 2 diabetes. I am sure that if the Government introduced a comprehensive action plan built on those five principles, it would receive the support of the entire House.
The Parliamentary Under-Secretary of State for Health (Jane Ellison):
I accept that there is a challenge about the need for a national action plan.
[...] Nevertheless, I currently have no plan for a UK-wide strategy because health is a devolved matter.
Jim Shannon:[...] but we had a UK-wide strategy until 2013—last year—so we have shown that we can work together. All I am asking really is: why we do not initiate a similar plan to what was there before 2013—a 10-year plan that started in 2003—and have the four regions work together? That is exactly what the Melbourne initiative is about, and we could do it because we have done it before.
3. Education was also a strong theme (and one I have strong views on too!)
Jim Shannon:Only one in 10 people who are newly diagnosed with diabetes are offered education on how to manage their condition, despite strong evidence that education is a cost-effective way of giving people the knowledge that they need to manage their condition. On managing diabetes, after someone is diagnosed as diabetic, what help is given to them to ensure that
they manage that in a sensible way?
Mr Sanders: The point about education is interesting. According to the National Audit Office, the estimated amount that the NHS could save annually through people better understanding and managing diabetes is £170 million. That is just from improved awareness and education.
Jamie Reed: There is an issue with not just numeracy, but literacy, and there are also issues about social exclusion, which I am sure we are all aware of. We need to put some time and effort into understanding and resolving those issues if we are properly to increase self-management among diabetics.
4. Use of Data
Jamie Reed shared a vision of the future that I'm not sure is a "utopian world", but smarter use of data certainly has it's place. Ownership of data and privacy concerns will be important issues to resolve and a public dialogue needs to begin before this takes place.
Jamie Reed: "... the most important issue in managing my condition is having access to data about it, such as my blood glucose readings and my insulin ratios. We need a framework and a strategy for medical innovation that incorporates diabetes research—from not just a scientific point of view, but a patient’s point of view—in a profound way. How can we become the
best country in the world, in terms of medical companies and other pharma-based industries developing new and innovative ways of treating diabetes? [...]
I look forward to the day when my data can be
captured in real time and shared with my GP and my pharmacist, so that I do not have to phone up, text or e-mail to get my insulin prescription. My GP and my pharmacist will have the information and the algorithm, they will know when my prescription needs to be ready and how much I am using, and my doctor will know how I manage my condition. We can hothouse innovation—my office and I are doing an awful lot of work on this—but we need to make that innovation part of not only a national
diabetes strategy, but a biotech and medical innovation strategy."
5. Patient Empowerment
Jane Ellison: People cannot be empowered without information.
Jane Ellison:
I want to discuss another area in which we can make a difference by empowering patients. Colleagues might be interested to hear about the patient experience of diabetes services survey, part of the national diabetes audit, in which I know there is always great interest in the House—we regularly answer a number of parliamentary questions about it.
The survey measures the health care experiences of people with diabetes in England and Wales. It collects information online from people with diabetes by asking questions about their care using a short, validated questionnaire, and it is being tested.
Jane Ellison: Public Health England is developing a tool to drive improvements in diabetes care and iron out variation. It will be launched later this year, and although I am not able to give much detail now, I am sure that my hon. Friend the Member for Torbay will be interested when it is launched. It will provide a clear picture of how diabetes care and
outcomes vary across the country and among practices, which will support decisions on how to make improvements.
Having had sight of this tool ahead of its launch I can only agree with Mr Sanders comment:
One of the challenges of a bottom-up approach, as has been highlighted in this debate, is getting people to use the information that is out there to drive up standards. People need to be aware of where the information is and how they can best use it, which is a challenge not only for diabetes but across the health service.
The tool visualises data that has already been published for some time. It is all very well showing patients how good or bad their care is, but if you don't tell those same people how they can effect change to improve their care then it doesn't empower patients at all!
Jane Ellison: That body [NHS England] is implementing what it calls a customer service platform to allow patients with diabetes to self-manage, through booking their own appointments, managing their prescriptions, monitoring the care they have received and being able to view their personal health records.
Clearly my view of self-management is very different to that of the Parliamentary Under-Secretary of State for Health! Being able to book appointments and order repeat prescriptions are useful tools, being able to view my health record would be wonderful - in theory all of these things COULD be delivered now (and some areas do provide all of these tools) but even if they were universally available it's nowhere near what I would consider required for self management!
6 Working together
Jamie Reed: It would, therefore, be a tremendous gesture—not for its own sake, but from the point of view of those living with this condition—if Members who understand type 1 and type 2 diabetes were allowed to contribute their knowledge and experience to the production of a better plan that would better suit those with this condition.
Jane Ellison: ...I encourage Members to tell us of effective local initiatives, so that we can spread the word.
7. The Melbourne Declaration
Since the declaration was signed, over 100 parliamentarians have signed up as members and many more have declared themselves supporters. Two newsletters have been published and are hosted on the International Diabetes Federation website, a Twitter account is now active.
Following the declaration and events in Parliaments around the world, the ExPAND Policy Toolkit for Diabetes has gone live and will greatly assist the aims of the declaration. It is a practical guide to help diabetes advocates to challenge national Governments and to raise the profile of diabetes.
