Kaleidoscope - what are YOUR priorities?

I've been out of the loop in the last year when it comes to new projects on the diabetes horizon - mainly because there is a socially acceptable level of housework which has to be met in order for your home to be considered habitable; a level which has long been the stuff of legend in our home since the whirlwind arrived.  But last week I had the opportunity to take part in a focus group about a new way or working with Healthcare Professionals (HCPs) when it comes to verbalising what is important to us in managing our diabetes at any given time, whenever we visit the clinic.  That new way of working is called Kaleidoscope.

 

Kaleidoscope is the brainchild of Chartered Health Psychologist Dr Kath Barnard, who recognises that at any one time there can be a multitude of factors affecting how well we are managing our diabetes on any given day.  Those factors (for example, the level of support we have at home, our access to the appropriate technologies, our knowledge of diabetes, or how burnt our we are), are fluid.  They change constantly and our needs change based on how well each aspect of our lives is working with all the others.  And just like a kaleidoscope, if you stopped your life in the middle of the daily whir, the resulting patterns would look wildly different and complex each andevery time.  But trying to communicate what is most important to us in the 15 minutes we have to meet with our diabetes team can be difficult.  And if, like me, visits sometimes happen when I am in the depths of burnout and barely even registering my diabetes, those clinic visits can sometimes involve a very satisfying - but not overly productive - 15 minute rant about diabetes and the general bastard that it can be.

 

The idea behind Kaleidoscope is that a short online (mobile friendly) questionnaire (six minutes to complete in my case) can help identify the top 3 priorities for you at that time.  The questions broadly cover a number of key areas such as environmental, physical and psychological factors and how you are feeling about various aspects of your care/management. The end result is your top three priorities listed for your next clinic visit. This gives a voice to those struggling to find their own, or to those who find it difficult to steer a conversation - or even recognise - what is most important to them.

 

I had the opportunity during the focus group to try the model, and completed it true to what is flipping around my brain about diabetes right now. I imagined that my clinic visit was tomorrow, and that this would be what I aim to cover.

 

"Great," I thought.  "But I know what my priorities are. I don't think I need to know them before I go in. This is probably more for people who struggle to communicate their own needs.  Mine will obviously all be about burnout."

 

Oh, the arrogance.

 

After six short minutes, there they were.  My top three priorities, of which only one related to the psychological aspects of living with diabetes.  It took me a while to work out where the others - knowledge of managing diabetes and another I can't now recall - came into play.  But as I sat and mulled it over, it all made sense.  Since my diagnosis of autoimmune thyroid disease, my feelings towards managing such frustrating conditions have been all over the show.  I have spent hours Googling Graves' Disease, energy levels and diets for thyroid function, feeling helpless, hopeless and hapless at best.  I have tried diets, pills and supplements which have all played a role in changing various aspects of my usual diabetes management - something which played second fiddle to my (stupid) new condition. The ups and downs of trying to solve one problem have left me feeling clueless about the one I thought I had a handle on.

 

Kaleidoscope helped me unmash the muddled-up soup of thoughts in my head and replace it with three places to start a conversation; one which may help me refocus my thoughts and efforts on the most important thing - my health.

 

It turns out that even after 30 years, there is still something you can learn.

Be anything you want to be...

I have very mixed feelings about Theresa May. On the one hand the industry I work in has been decimated on a scale far greater than if she had driven a steam train into Piccadilly Station and set off an atom bomb. Morale is at an all-time low and the derogatory comments and smears she has made of services I treasure, such as the Police, are unforgivable. On the other hand, as a person with type 1 diabetes in a public role, she flies the flag bearing the mark of diabetes. 

I often think about the 'what's ifs' of my daughter one day developing type 1 diabetes. She shouldn't, given that she has just a 2% chance of developing it, but the chance is always there. Raising a child with type 1 can be a tricky business, and in amongst the challenges about self-management, maintaining blood sugars, issues with food and trying to manage a long-term chronic condition, come questions and identity challenges about what you can and can't 'be'. Aviation and emergency services are just two of the careers marred by limits on who can do them, and usually people with diabetes need not apply. 

Had you told me as a girl of just four, hands too small for the cumbersome blood glucose meters of the day, whose life had been irrevocably thrown into a veritable typhoon of diabetes, that she could one day have a job like being the Prime Minister of England, I would beamed from ear to ear.

The fact that the next would-be Prime Minister of England has type 1, is a landmark for people with the condition. People like Halle Berry, still causing merry hell by telling people that she was a type 1 who 'weaned herself off insulin' (God, give me strength) means we may finally have a 'real' face of the condition. Even if that face is one whose political decisions I have disapproved of, deeply. 

The one good thing out of the political turmoil and social unrest in our county is that one day I may have to convince my daughter than she can be anything she sets her mind to, and that can even be the Prime Minister of England.