Appointment with the Centre of Excellence in London

[Lara1]

Hello to All,

For about 4 months I've trying to get an appointment with the COE in London. I live on the continent so I had to get my file transfer approved by the health authority in my country, which they did but they are asking me to provide them with the date of my appointment. I contacted the COE at the end of the summer and I provided everything they asked for but they keep telling me that they cannot provide a date yet and that I should wait. The issue is the national health fund here only gave me 3 months to provide a date and it's getting to an end. What's your experience with getting an appointment with the COE in London? How long does it take to have a date of appointment (I don't care if it's a year from now as long as I know the exact date).

Thanks!

Lara

[Legomum]

Contact Prof Fortune’s secretary directly and ask for a date 6-12 months away. Explain you just need an actual date for the funding to be approved. Contact details are on the behcet’s website and more info in the professionals portal and referral info section.

behcets.nhs.uk/our-centers/...

[Legomum in reply to Legomum]

I have been attending Prof Fortune’s clinic in London since she diagnosed my Behcet’s in 2004.

Our daughter (aged 8) attends the Paediatric Behçet’s clinic: her last appt was Oct 2018 and she was booked in for follow up in May 2019. Bridie is the admin lady at reception who may be able to help, or the specialist nurses Nardos and Elizabeth. I am sure there is now a dedicated secretary who deals with referrals and overseas cases too, sorting out funding as well as the funding for patients’ treatment eg biologics like Infliximab and Humira.

[Lara1 in reply to Legomum]

Thanks for your suggestion. Will try doing that.