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wjgregg
10 months ago

Dear @ameliax,

Petition signed, and link shared on twitter.

Best wishes,

Jon


adamski
10 months ago

Done 😊


dominics
10 months ago

Isn’t this less about where you live, per se, and more about the lack of ability, knowledge currency and willingness of the neuro teams.

The entirety of England is bound by the same guidelines (a bit hazy on the Welsh/Scottish specifics). For example: Ocrelizumab – the Bluteq processes are the same across the country so if a medic wished to Rx and the patient fit the clinical criteria there are no postcode barriers.

I believe that we as an MS population need to learn (it isn’t right nor that interesting but it is necessary) how the the processes work and call out anyone who tries to skirt/sidestep them.

I am a bolshy bugger with a smile. Not because I am particularly deserving, but with Oc I had started my campaign to get on it 12mo before it was licensed. I made my intentions clear, asked about every step, was polite but insistent. It turns out I was the first patient in my county to get it on Jan 5th 2019. Days after the Bluteq was filed!

My main approach was to ask why something couldn’t happen on the date specified. Make them explain why something legally mandated isn’t happenimg. Ask them to write in your notes the question and reply.

Smile sweetly and carry a big stick. There are legal time bound obligations on the departments and clinicians. Know what they are. If you *have* to go down a more formal route they’ll know you are genned up.

I have never even had to threaten a formal complaint. They know I know. No need to throw weight around. We all get on well and they enjoy dealing with informed and active patients.

It won’t come to you, you need to go to it. My motivation is my health and my future health. For all the clinicians say, there are a load of patients. I am just one of many and need to accept it.

Just my tuppence worth.

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