Dr Gabrielle Murphy at the Royal Free?

[Wolfiness]

I know, there's rfh-tr.fatigueservice@nhs.net, but it doesn't go directly to her and it looks like she's been removed from https://www.royalfree.nhs.uk/services/services-a-z/fatigue-service/#tab-the-team.
See it says "Other key team members" without showing who they are "other" to?

 

[Cinders66]

Hi @Woolfiness
I'm a bit confused as to if you want dr Murphy to visit you at home? If you are concerned at avoiding hospital I assume you won't be able to do out patient ? Does dr Murphy have any experience of the severe and of home visit? Or do you want her just to be a background CFS dr your GP can consult in extremis?
I personally woukd be reluctant to put myself in the care of a PACE advocate although she might not assume rehabilitation is suitable for the severe but she might be the best option of nothing else. I'd suggest dr Paul worthley if you can afford private, as someone who can advise your GP and has severe ME expertise. and Emily Collingridge's book if you don't already have it.
Hope you don't hit the deep depths.

 

[Wolfiness]

I'm entirely bedbound and as I say I need a doctor competent to care for me and avoid hospital admission if/when I'm no longer able to communicate or swallow and need tubes etc., who won't say that in pwME the physiological inability to swallow is due to "severe emotional problems", as another ME consultant (not even a psychiatrist) informed me, and who can maybe address the issues expressed in http://forums.phoenixrising.me/inde...itivity-which-will-convince-my-parents.50973/

 

[PinkPanda]

Were you able to get the contact details of Dr Murphey?

I couldn't find an email but I found two phone numbers if you can call or someone could call for you.

+44 20 7794 0500
http://www.zoominfo.com/p/Gabrielle-Murphy/1790311424

Tel: 020 7599 1712
http://nlmenetwork.org.uk/doc-nhs-services.php
This seems like the number from the 'Department of Infection and Immunity' at the Royal Free, maybe they can connect to her.

Otherwhise, maybe @charles shepherd has an idea how to contact her?
(Or knows somebody else?)

 

[Cinders66]

Paul worthley has ME specialism and would probably have time for all your care concerns too, which maybe busy NHS lead wouldn't? . Have you seen the ME trust web pages?
I'm concerned, as I think Royal free CFS were one of nice stakeholders who didn't want Nice guidance reviewed. I hope you find the support you need.

 

[Wolfiness]

Yes I contacted ME Trust and am now preparing info for Dr Worthley, seems like a much better bet. Thank you

 

[Wolfiness]

But f*ck it the NHS has a duty of care.

 

[PinkPanda]

But f*ck it the NHS has a duty of care.

Yeah, they don't seem to take their duties very seriously.