…… but we have work to do!
I’m on the way home from an incredible 36 hours with some of the country’s finest ‘experts’ on type 1 diabetes, the condition I have lived with for 18 years.
Dr Partha Kar who (if you don’t already know) is a diabetes consultant based in Portsmouth took it upon himself with some help from his local team and other like-minded enterprising folk to gather the troops to see if they could connect and build a new model of care for type 1 diabetes.
The group was around 50 strong, bringing with them a vast array of expertise including commissioning, clinical, lived experience of type 1 diabetes, policy making and technology. They also brought with them shared purpose, to an extent shared values and a sense of responsibility to tackle the complex challenge of improving the lives and prospects for people, who like me, live with type 1 diabetes.
The process was; learn about the context, socialise and build relationships, breakout into smaller groups, build new models of care together, present to the room including ‘the judges’ and decide together a winning model.
Partha designed it in such a way that it was engaging and fun but at the same time there were no holes barred on how serious an issue we were dealing with. As a mother of two young children there was one particular fact that stood out for me shared with us by Dr Pratik Choudhary:
‘Current practice kills at least 30% more people by the age of 50 than best practice should achieve’
There are currently around 400,000 people who live with type 1 diabetes in the UK. The complications caused by type 1 diabetes are serious and costly to lives and the NHS for example stroke, neuropathy, retinopathy and kidney failure.
One of the most important facts for any professional or family member caring for or people living with type 1 diabetes is that the risk of these complications is significantly reduced by good self-management from the start. This is the case for the general population too but the risks are hugely magnified in the context of type 1 diabetes and speeded up.
The overall headline message from the event for me was that the current situation and outcomes are dire. Variation and lack of understanding of both patients and clinicians across the country is the biggest challenge but that we have everything we need to transform that position. The glass is indeed half full!
We listened to stories of vanguards, NICE Guidance, current outcomes, the acute and primary care perspective services for children and young people, adults and the thorny issues of transition. We heard from Diabetes UK and four very different stories from Laura, Mike, Jens and ‘Diabetes Dad’ Kevin with some strikingly similar issues highlighted. Finally we had some challenging calls to action from the ‘legends’, Simon Heller and Fiona Campbell.
The take home messages for me were:
- The financial system is causing blockages to the development and delivery of the best, most impactful and efficient care.
- There is a widespread lack of understanding of type 1 diabetes across health care professionals and others including commissioners, policy makers, generalists, specialists and patients let alone in the general population.
- Emotional and mental health support is almost non existent yet it is widely acknowledged as key to self management
- Type 1 diabetes is (arguably) one of the most complex and enduring conditions for people to self manage
- People living with type 1 diabetes spend relatively little time in close contact with the NHS until complications arise and then are mostly in contact with non diabetes specialist health care professionals.
- The social determinants of health have a huge impact on a persons motivation and ability to self manage, e.g. if someone is feeling isolated, has very little income, no job etc how can they prioritise and focus on their type 1 diabetes? Maslow’s hierarchy of need provides a framework for understanding this important context.
- Engaging some people in understanding and self managing their type 1 diabetes seemed to be one of the most difficult challenges to tackle but I am pleased to report I never once heard the phrases; ‘hard to reach’, ‘adherence’, ‘non-compliance’ or ‘did not attend’. There was talk of how rigid and inflexible the current offer can be in places and of the impact of the social determinants of health on a patient’s capacity to engage.
- We need to understand and unlock the full breadth of assets available to improve the lives of people living with type 1 diabetes including the community and voluntary sector, digital, primary care and the 400,000 community of people who live with type 1 diabetes themselves
- Transition across services provided for children and young people and those provided for adults is currently an issue. The services are currently completely different and causing negative disruption for young people.
- Structured education is widely thought to be one of the key basic elements of creating the conditions where people feel empowered to self manage type 1 diabetes and in recent years the availability has grown. However, there are still two key issues, firstly the uptake of the education and secondly the ‘melting effect’ of the education. Issues discussed related to the format and timing, lack of understanding of the importance of the course by patients and clinicians and when education is offered. (It took seven years for me to get the right education to self manage diabetes by which time much long term damage can already be done ).
- There are plenty of examples both in this country and further afield of approaches which work and have been shown to make a difference but the well known issue of diffusion of innovation across the NHS is proving a stumbling block and as mentioned earlier is creating a huge and unacceptable variation in outcomes.
- To create the conditions where people feel empowered to self manage type 1 diabetes or any other condition, they/we need to be motivated, feel confident, have the right knowledge, skills and tools and be connected to a network of supporting people, resources and services. This is not all in the domain or gift of health care professionals or the NHS but cannot be ignored when the goal is to improve outcomes.
So despite all these complex system and human challenges, optimism remained high and the whole group stayed focused and determined to find practical realistic solutions.
Four different new models of care were produced and presented at the end of the session. Two things struck me at this stage. Firstly, that all the models were (to varying degrees) trying to make the best of both specialists and generalists and primary, community and secondary care and of ‘specialist generalists’. Secondly, that no model was particularly expensive although would require some shifting across the system and genuine integration and partnership working. Every option began to recognise people as assets, for example there were a few mentions of ‘peer support’ and even the voluntary and community sector! All brought blended real world and digital approaches recognising that access to electronic health records for clinicians and patients is key, that virtual and telephone consultations have to be key and that stratifying risk using ideas like patient activation measures and care planning traffic light tools would help to flex and stretch the services. There was a real shift towards building genuine people driven support and above all finding ways to increase access and uptake of education for people living with type 1 diabetes at the earliest but right time for them.
The models developed will be produced and shared more widely in the long term (keep an eye on Partha’s blog for updates). I heard that Samantha Jones Director from the New Models of Care Programme and Jonathan Valabhji National Clinical Director for Diabetes asked for the write up of the models so I hope they will help this amazing group of people move this work into the next stage.
I want to take this opportunity to say a heartfelt thank you to Partha and his colleagues for your leadership, energy and commitment. As you wrote in your TalkT1 post summarising the event, it really was very special.
I have more than a hunch that the inaugural #TalkT1 event marks the beginning of a renewed and collaborative energy to make a significant change in our models of care and subsequently improving the lives of people so that, for as long and so much as possible, they do not suffer but instead they live well with type 1 diabetes. That’s got to be a good thing, right!
Here are a few little ideas I have been thinking about for a while which might integrate with all the models of care proposed:
- TRAINING FOR HCP’s: A mandatory short training programme for all health care professionals on the basics of type 1 diabetes to be delivered in partnership by specialists and people with type 1 diabetes
- DIGITAL: An online self care toolkit co-created and owned by people with type 1 diabetes which included; risk self assessment, self tracking of blood sugar level and other important factors e.g. physical activity, community forum, care planning and goal setting, access to wide range of digital resources, information about type 1 diabetes and related services and local activities and flexible online training and education.
- KIT BAG: A social enterprise owned/run by people with type 1 diabetes purely to develop an introductory Type 1 kit bag which would be given as a gift to every newly diagnosed person including beautiful and cultural/age appropriate guides, vouchers for equipment (as prescribed by clinicians but with an appropriate level of choice), vouchers for hypo treatment, cook books, gym vouchers, online code to access buddying and peer support and so on…. Like Finnish Baby Boxes this could become a public health tool but owned by the community not government.
- PEER SUPPORT: Every diabetes centre to have access to real world and online peer support with a range of opportunities for people with type 1 diabetes to connect, learn and share experiences, ideas and knowledge. This could include offering digital inclusion and other support in the waiting rooms, co-delivering short taster education courses in a range of community settings including schools, community centres, libraries etc. Every person living with type 1 diabetes would receive an invitation to connect with peers through a range of relevant opportunities.
A FEW USEFUL RESOURCES
David Craggs writes an insightful and well researched blog on some of the challenges around type 1 diabetes
What Professor Jane South doesn’t know about community-centred approaches to health and well-being isn’t worth knowing and she has put it all down in this report for Public Health England.
Peer Support means many different things, Nesta and National Voices explore the diversity of models in this comprehensive report
DAFNE or dose adjustment for normal eating is the most well known recognised structured education for Type 1 diabetes (it changed my life). There is a useful web resource to find out more.
Want to learn more about the in’s and out’s of living with type 1 diabetes. These Type 1 Uncut clips for young adults from Diabetes UK are on the money!
The latest NICE guidance (guidance for NHS services) for Type 1 Diabetes is generally thought to be very good although whether this is played out in reality is another matter.
If you want to learn more about how to use online resources you could do worse than having a look round Tinder Foundations ‘Learn My Way’ site including how to book online GP Appointments, ask for repeat prescriptions and see your summary health record. Also you may like to know that NHS England funds them to deliver a national NHS digital inclusion programme.
ExCarbs is digital resource I learnt about at TalkT1 so haven’t had a chance to use it yet but have it on good authority that it is good if you are interested in exercise and diabetes
Diasend makes sense of the data from blood glucose meters. Patients can just sign in and upload data.
MySugr is a fun suite of apps designed to help children, young people and adults self manage
Cook and Count is a great app if you like to cook from scratch and you want to know the nutrional and carb value of your meal
Elefriends is a community platform run by MIND which offers a safe place to ‘listen, share and be heard’
Few more bits and bobs here on different aspects of healthy living courtesy of NHS Choices
There are 1,100 apps for people with diabetes produced by all sorts of people and organisations for all sorts of reasons. Always read the small print especially if they are free. Be safe and healthy online!
IF YOU KNOW OF ANY MORE BRILLIANT QUALITY DIGITAL RESOURCES PLEASE DO ADD IN COMMENTS BELOW OR TWEET ME @roz_davies using hashtag #TalkT1