Self Care Toolkit for Diabetes

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I was recently invited to take the rounding up slot at the end of a local event hosted by the Sheffield Diabetes UK group.  This post is a summary of the event and my presentation.

Minion Centred Care!

GP, Dr Ollie Hart kicked off the day with a glimpse of what a 21st century primary care experience might look and feel like. With the help of Minions, he somehow translated the concept of person centred care, patient activation measures and social prescribing into something we could all understand.  I think he is really on to something, he has found a methodology which helps an overstretched formal health/care system move towards working in partnership with patients. He starts with what matters to the patient, providing different responses to different needs, re-allocating resources where they are going to have the most benefit and recognising that often most of what affects our health is not in the sole gift of clinician although they can influence and help in many ways.

One thing he said which has really stuck with me was for people who were least engaged in their health and struggling ‘the mindset shift was the most important step’. This made me really sit up and think. Mindset shift is personal and emotional, it can’t be fixed in 10 minutes with medication.

Dr Hart then went on to explore the link between primary care and community. He has recognised that for some people building connections with people they can identify with, growing confidence, skills and knowledge, taking little achievable steps can make a difference but isn’t in the gift of the clinician. In Sheffield, social prescribing has become the tool for building that bridge working with community health champions, health trainers and other activists who help others in their own communities. This is beginning to look like a new model of 21st century care to me!

Missing Jigsaw Piece?

Later a specialist consultant, Dr Jackie Elliot shared with us how Sheffield is doing against targets and comparative areas/trusts. There has been some incredible improvements in the outcomes for younger people which is really important given the length of time they will live with diabetes and the impact optimum control is likely to have on their long term health. Further good news is that Sheffield is hitting most of the expectations around the annual assessments it is recommended people with diabetes receive. This is a good thing as if anything goes wrong it is usually better to catch it early. So it looks on the surface at least as though we are getting good clinical care in Sheffield and certainly that has been my experience. All the recommended service boxes are ticked most of the time for me! However the patient outcomes measurements which are blood sugar level (HbA1c), blood pressure and cholesterol are very poor for both people with type 1 diabetes and type 2. I was quite shocked by this, if the recommended clinical care is good, why then are the results for patients not matching? It made me think about a recent Health Foundation report which said this:

‘The greatest influences on our wellbeing and health are factors such as education and employment, housing, and the extent to which community facilitates healthy habits and social connection. Access to health care could account for as little as 10% of a population’s health and wellbeing.’

I wondered if Diabetes care in Sheffield took Dr Hart’s approach to working in partnership with patients using person centred care approaches, patient activation measures and social prescribing, would those targets improve?

The Future is Bright!

I went to a workshop later in the day led by a young woman Lydia Parkhurst who shared her story of being diagnosed with type 1 diabetes and using digital as part of her self-care. You can read all about her experience on her blog; The backpacker and the pod

For me, it was an inspiring and hopeful presentation not just in the context of diabetes but also the future of health/care and society. Perhaps we might one day have another female prime minister with type 1 diabetes?

Self-Care Toolkit

So, my daunting task was to finish off the day. I chose to talk about what I think should be in our self-care toolkits. Keeping it simple I identified 6 items. The first three I think the system has pretty much got covered although we do know there is enormous variance (the postcode lottery of health/care is alive and kicking). They are:

  • Medication and basic blood glucose monitoring kit
  • Access to expert clinical care
  • Education

All three of these have made an enormous difference to my life and I am truly grateful to all who set up and run the NHS, who research and improve the clinical care and medicine which has kept me alive.

For people who don’t know, structured education in diabetes is recommended by NICE and I can say from personal experience, DAFNE (the type 1 diabetes structured education) transformed my life and clinical outcomes. My ability to lead an independent and fulfilling life, contribute to society in many ways and keep fit and healthy has all been enabled, at least in part, by attending a week-long course.

I gave an example of a story where a couple of hours after giving birth to my second child, I realised I had the symptoms of Diabetic Ketoacidosis and was able to treat myself by testing for ketones and using the sick day rules. None of the health care professionals in the labour ward at that time knew as much as I did about how to manage my diabetes.

Whilst I think the formal health/care system has got the first three tools in my kit covered there are three others which I think there is still work to do on both the value that is placed on them and how clinicians and patients work together to build them into our self-care toolkits. They are:

  • Community/Peer Support
  • Digital Resources
  • Mental Health

Community

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Starting with Community, there is now clear evidence of impact and return on investment of the impact of social networks and peer support, e.g.

  • Social networks improves self-management and physical and mental well-being, helps people to cope with their condition and can produce substantial saving health/care costs (2014, Reeves et al)
  • ‘There is evidence that peer support can help people feel more knowledgeable, confident and happy and less isolated and alone’ (2015, Nesta/National Voices)
  • Loneliness is as damaging to our health as smoking 15 cigarettes a day (2015, Holt-Lunstad)

I have benefited a great deal of peer support ranging from practical information to moral support and inspiration. Anne Cooper, Alex Silverstein, Laura CleverlyDavid Craggs Andy Broomhead Hazel and Tony Blackbourne to name a just few people from the Type 1 and Type 2 Diabetes Communities.

Here are a few places to connect to other people with diabetes online and in Sheffield

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Digital Resources

Next up for the diabetes self-care toolkit is Digital Resources.

There is no doubt that whether you like it or not digital resources are a growing part of our diabetes self-care toolkit. From ordering repeat prescriptions to continual blood glucose monitoring, if you are not online and using digital as part of your self-care, you are losing out. Don’t take my word for it;

‘With more than 100,000 health apps, rapid growth in wearables and 70 per cent of the UK population now owning a smartphone, digital technology looks set to revolutionise the future of health and social care’ (2015, Deloitte)

Digital Health includes a wealth of possible self-care aids including apps, wearables, sensors, self-trackers, social networks, artificial intelligence, robots and genomics which could not only make life easier but in the long run may also potentially cure or eradicate diabetes. If you are interested in where the NHS is heading you can read the National Information Board strategy; ‘Personalised Health and Care 2020 (NHSE/NHS Digital Strategy’

I have personally found digital health really helpful as an information, motivational and organisational self-care tool and previously presented my views and experience here.

If you don’t feel confident using digital resources it is worth having a look at Good Things Foundation Learn My Way. If you work for or in partnership with a CCG there is a brilliant new digital inclusion programme you may be able to get involved in!

Below are just a handful of digital resources available for people living with diabetes and a very handy tip from the wonderful patient advocate Derek Stewart OBE

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Mental Health

My third recommendation for the diabetes self-care tool kit is looking after your mental health.

Whichever way you look at it, ’cause or consequence’, there is a close association between mental health and diabetes, here’s what the evidence says;

  •  ‘Patients with diabetes are at higher risk of mental health disorders — including depression and psychotic disorders — than the general population. Likewise, patients with mental health disorders are at higher risk of developing diabetes’ (2015, The Lancet)
  • 41% of people with diabetes have depression. It is at least twice as common in people with diabetes as the general population and between 30-50 per cent of cases are undetected (2010, NHS Diabetes)
  • 68% of people with diabetes who say they need psychological support do not receive it (2014, Diabetes UK Care Survey)
  • ‘Depression is known to have a number of effects on the ability  of a person to look after themselves and manage their condition. For example, depression can exacerbate the symptoms of diabetes by affecting a person’s ability to control their diet or manage their medication.’ (2012, Coalition of national charities)

Despite there being clear evidence of the link, I think we are a long way off treating diabetes as a mental and physical health condition and caring for people in an integrated physical, mental and social way. In 20 years of receiving excellent specialist clinical care, I have never been asked about my mental health in a diabetes care context. For the record, I have had anxiety, depression and what is called diabetes burnout and it has affected my ability to self-care.

On a more positive note, I am privileged to say that I am the managing director for Sheffield Flourish which is an award-winning charity and community network which aims to support people living with mental health conditions to (re)build the lives they wish to lead. Together we have built a digital well-being community hub and we are beginning to further develop the Sheffield Mental Health Guide. In Sheffield we also have an IAPT service which provides psychological therapies for people living with mental health conditions.  I am also a non executive director for a brilliant organisation Care Opinion which provides a digital tool to help patients to share their health/care stories and influence future experience of care. All useful resources freely available for all in Sheffield.

Gratitude

I am truly grateful for the life saving insulin, the free at the point of contact amazing clinical care and the structured education I have recieved. I read recently in a local magazine that in 1921, a rich steel baron from Sheffield became the first person with type 1 diabetes in the UK to use insulin. So 100 years ago I would probably have died not too long after my diagnosis.

It is worth taking a moment to appreciate the NHS and how far we have come in 100 years, and also to make the most of all the resources we have available to help us self-care and live as long, healthy and happy lives as possible.

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A big thank you to Andy, Hazel, Tony and all the volunteers who work tirelessly to bring people with diabetes together to help them build the confidence, knowledge and connections they need to manage their own diabetes.

Full presentation here: Sheffield Diabetes (2)

 

 

 

 

 

 

 

 

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