NHS communication breakdown?

[Suzita76]

Hello everyone,

I had a fantastic birthday present this week (apart from breaking a tooth!) when I read ( via this forum) that the NHS was extending Tocilizumab prescriptions until March 2022 for those of us lucky enough to already be on it.

My delivery company also phoned to arrange a delivery; I had been injecting every fortnight instead of weekly for a couple of weeks to try to eek out my supply.

Then, on July 1st, I received an electronic letter from my Consultant to tell me she had resubmitted an application to try to get Individual Patient Funding so that my treatment could be continued (- she thought I had run out, and has told me in the past that the NHS would only consider such applications once a patient had finished their “allowed” ration of Tocilizumab.

I find it really shocking that Consultants do not seem to be receiving information that the NHS must surely be sending out to all hospitals? (I had to send her copies of the NHS Rapid Response document that was published last July - to allow continued treatment to GCA patients, due to the Covid pandemic- or I might never had got it, and likewise with the extension in March this year).

I emailed her and pointed her to this website, and to Dr Sarah Mackie’s tweet, and have not yet had a reply. Does anyone know how ( or if!) the NHS communicates with hospital consultants? Not very well would appear to be the obvious (and worrying) answer.

[DorsetLady PMRGCAuk volunteer]

Right hand? Left hand? Having worked in public sector for over 30 years I know how bad communication is! 🤦🏻‍♀️….in all departments.

[PMRpro Ambassador]

Agree with DL - except I'd say "no hands ..."

To be fair - there is a lot of something or other going on in the NHS due to Covid - and the gubmint's efforts to involve the private sector in everything ...

[jinasc in reply to PMRpro]

and the intro of a new computer system when it was hacked............ however don't start me on communication with GP's.

[MrsNails]

Hi Suzita76 This is very much why we have to ‘be on the ball’ & be our own advocates....

I think we were lucky getting the News so quickly (Thanks to Twitter - l know who to follow 😉)

I share any relevant information as soon as I see it, thus making us ahead of the game & all we can do is get in touch with our relevant Team(s)

Sarah Mackie has a great interest in TCZ so info from her is always relevant & first hand.

I used to work in the NHS & it can be a slow process getting the information out there at times & as we know, times are not normal.....

Best Wishes

MrsN