Can anyone help with this please?

[Squeezer]

Does anyone have a name and hospital of a doctor in the midlands who is well-versed in Hughes? Or is St Thomas' the best option to try for a knowledgeable consultant?

Thanks.

[MaryF Administrator]

Hi there do keep trying to get yourself an appointment at St Thomas, as yes they do have real expertise, but in the mean time, there may be somebody in the Midlands who can help in you in this interim period. We have quite a few from the Midlands... who will no doubt come on here and advise you further! Good luck. Mary F x

[Squeezer in reply to MaryF]

Thanks Mary.

Going to GP's this morning to discuss where to go from here- and if the blood tests were done within the timescale they should have been.

I just thought it would have been a good idea to be able to give her a name of a suitable consultant to refer to. Someone who actually knows the condition instead of trying to educate them about it's existence!!

Fingers crossed!!

[MaryF Administrator in reply to Squeezer]

Names at St Thomas' quite a choice for those.

guysandstthomas.nhs.uk/our-...

Mary F x

[Carol-Barnsley]

Hi, I have seen both Dr Yee and Professor Caroline Gordon aat the Birmingham City Hospital. They are both equally knowledgable with Hughes. Ask your GP for a referral, I got to see them very quickly too.

Good luck, hope this helps.

Carol

[Hidden]

Caroline Gordon is excellent and you will have more chance of being referred to a local hospital:

birmingham.ac.uk/staff/prof...

[Squeezer]

Thankyou all for the information.

Unfortunately, the GP was a bit of a brick wall- I did find out that the bloods weren't tested quickly or frozen before the tests could be done as she hadn't been told by haematology that they needed to be. She is unwilling to get them done again and was basically saying that all symptoms could be explained away by various other things and that she didn't think there was anything to worry about or any need to investigate further and so was not going to refer on to any consultant for further investigation.

Having said all that, as soon as I mentioned the idea of going private to see someone at London Bridge Hospital, it was like I had flicked a switch and she suddenly changed her attitude saying that she would write a referral letter and offered her support in any way that she could help.

Surely if she felt Hughes was not responsible for the symptoms and truly believed nothing needed doing then she would have said that to go private was a waste of time, effort and money on both our parts?

I'm starting to think that it is more a financial matter for them than being motivated to help me find answers (or am I just being cynical??)

Feeling quite frustrated again today

[emmaj]

i saw caroline gordon at birmingham,and referred to will lester heamotoligist hes at the top of his game x