It's been over 3 months since the last Path To Pumping. Christmas and New Year came and went, the kindness of my peers continued and I took my foot from the throat of decision makers. We could call this a break, a recharging of the batteries, time to take stock and evaluate where everything stands. Indeed, all of those things happened and that's a good thing. Type 1 Diabetes is exhausting and the fight for access to an insulin pump really does add a lot to an already over spilling plate.
The rest hasn't really been a case of ignoring the situation of NHS pump funding refusal. I did some reading and I did some peer supporting of others who are in a similar situation to me. Here is some of that support:
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It shouldn't be necessary - I keep repeating that, I know but it's true. T1Ds shouldn't need to resort to such measures in order to obtain an insulin pump. Let us remember what an insulin pump is because I think it can be confusing when seen through the filters of Instagram. This is not a glamour item, a fashion accessory, the latest must have. It's not the latest phone, piece of tech or anything to boast about. It's not an object of desire. It is a machine of necessity for many. It's a NEED and not a WANT. Cool? K...
...So! since Mid-January, I have been making contact with various people and departments. You may remember the struggle of obtaining a letter which granted permission to purchase pump consumables, last year. That struggle ended when I spoke with an Improving Care Manager at DUK who happened to be in contact with a commissioner at my CCG. The commissioner kindly spoke to someone at my Diabetes team and permission to purchase arrived a few days later. A case of not what you know but who? Maybe.
So, I tried the same avenue. This time, I have submitted all my case details directly to the commissioner with CC a professor at Diabetes Network who has a particular interest in equal access to Diabetes tech. Information sent and I await a response.
While I'm waiting! I decided it might be an idea to make contact with the Parliamentary and Health Services Ombudsman. It couldn't hurt, right? Only two hours before publishing this blog, I took a call from the Ombudsman. A delightfully friendly and understanding man explained how they can help should my route of complaint through my CCG not be successful. The call was very informative and it's nice to have ammo left in the rifle should things not progress as they should.
Parliament, ah yes! remember all those votes we were casting before the virus came to town? It seemed like every Primary school in the land was a part-time ballot box for a few years. I'm a voter! although I do not have a loyalty to a political party and I had already advised one of my peers to write to their MP (see the tweet link up above). My turn, then. Surprisingly, I made contact with my MPs office within a few days which resulted in a half hour meeting of me explaining how pump therapy works vs MDI and how things have changed for me. The result of that conversation was that a letter to support me in pump funding would be sent to Robert Mitchell, the Chief Executive at University Hospitals Leicester. I have approved the content of that letter today (it's been a busy day).
You wait 20 minutes for a bus then two come along at once...
...Soon after that approval was sent, I was called by a member of the UHL MDT (Multi-Disciplinary Team). The tone of this conversation and use of certain terms has led me to believe things are heading in the right direction. How individuals communicate can give a lot away, that's why poker players make idle small talk at the table (Trust me, don't say too much if you're ever playing experienced players). I feel the appointment, in two weeks time, with that person, will be of a positive nature. My care has been moved to that HCP at a different clinic under UHL.
So, there's (all) that.
The support from you all has been incredible. I've felt very emotional at some comments sent to me by complete strangers. I'm delighted that courage has been found to challenge and push for change.
I'm still a Diabetic, by the way. Still trying to get by each day and managing pretty nicely on the donated pump attached to my stomach. Better than ever, actually and I want to continue this level of T1D management or better for the remainder of my years. It seems that many of you think you could benefit from insulin pump therapy. Perhaps you won't need to go through as much as I have to get there. If you do, crank it up to 11.
Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!
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