Sunday, July 8, 2018

Bright...

The sun is out. Its coming home. World Cup is in full swing- and maybe, for a fleeting moment, there is a space in the time continuum where one can be happy- albeit for a little bit. The NHS 70 parties have had their fair share of cake cutting- and the question is how one takes that spirit- for as long as it lasts- and takes things one step forward.
Yes, I know..Brexit hangs over us, the NHS has money but not quite, yes- no one quite knows how exactly the money will NOT be used to fill out staff costs, gaping holes in hospital budgets- when the ask is in primary care- or even social care. Stack that up against the blaze of technology- and the feeling of going from one extreme ("Can you send me that request by fax in triplicate?" to another ( "Artificial intelligence will detect those at risk of diabetes and solve it too")- and yes, I know its easy for that sense of euphoria to deflate quickly. And then you look at some of the old tripe coming out from some quarters of the NHS- whose role, I must say- even after 2 and a half years- I have not been able to fathom or understand- and you wonder….but come on folks…its coming home- so lets try and think a bit more positively, yup?

To me, the key of positivity- at least in the world of diabetes- sits in the gradual activation of those living with diabetes. Its been a work in progress- but over the last 3-4 years, undeniably, the voice has grown- and starting to make an impact. Multiple events have started to sprout up all over the country- especially those living with Type 1 diabetes- beyond simply the ones hosted by Diabetes UK or JDRF as patient charities. These are independent events- hosted by passionate people- and the slow yet discernible change is undoubtedly down to that. It is not easy for policymakers to continue to ignore these voices as they grow stronger- and start to have their impact as a collective.

Yesterday, I went to the #T1DGlobal18 event organised by Gavin Griffiths- and as ever, a huge learning experience listening to all- especially those from other parts of the world. Perspective hits hard- when we listen to parts of the world- where Type 1 diabetes is still a taboo issue, where insulin costs prohibit the simple issue of getting a life-saving medication- and the simple fortune of existing in a system such as the NHS comes to the fore. It also showed how the conversation is starting to steer slowly from being led by HCPs- to what those living with Type 1 diabetes are asking for. The voice is growing louder- and may it grow indeed. It is progressively difficult for some to hide behind faceless names and titles while making decisions on behalf of others- or using NICE guidelines as a convenient shield as and when it suits.

That is hugely encouraging for me- and if anything, want more of this sort of patient led disruption. Policy roles come with their own strait-jacket- but one thing that can be done- is give those living with diabetes their voice- whether it be access to specialists, knowledge about the level of knowledge out there- or indeed technology. So to those who want to speak up- do so- and continue to do so loudly. Those who make the decision to not give access to technology that works- needs to be bold enough to stand in front of those they serve and explain their decision- in public- not hide behind committees and minutes. The time is changing- and taking advantage of the present level of euphoria? I would suggest to all - do it more. Ask boldly, ask with strength- ask collectively- the force is much more stronger when done in a pack. There are now enough of a collective of HCPs who will provide you with the forum you need to say so.

4 years ago, the voice wasn't this strong- today it is…whenever you open social media, some event related to type 1 diabetes is happening- and that is brilliant. The space is laced with advocates- patients or HCPs- and it certainly feels like change is here; conferences also seem to have a new generation of HCPs keen to listen more- and bring changes to their service- and my job on this front is nearly done. So I will repeat it again…change will be brought by patient power- and at a policy level? You will have all the support you need.

Let's do this. Keep the voice strong..keep it united…keep it focussed…the system will change. Bear in mind, it is not obliging you by changing…it will change to stay relevant, it will change to adapt with the times- or be left behind. Whether that be in the way we interact, the way we give access or the way we deliver care. The time of the self appointed vanguards is drawing to a close- and it is up to you as those living with diabetes to end it.

The future is bright…seize it.







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