Any one help with a consultant who would see me for mcad

[Lisacunningham68]

Hi there I am at my wits end me and my dr are I can not get a consultant to see me at all been diagnosed with mcad for a long time now and it is getting worse, yet no matter who we try I am not in there catchment area, I am entitled to be seen but getting no where fast at all and I am suffering becasue of this, no one’s health should suffer because of where you live, I just want a consultant to go over all the things again maybe my medication wants tweaking

[floating_]

I'm seen in St. Thomas' - they're the national referral centre.

[Lisacunningham68 in reply to floating_]

How do I get to see them there, I am scotland I don’t mind travelling at all

[floating_ in reply to Lisacunningham68]

I'm not sure as you're in Scotland. It might be worth waiting for Jess to comment here or to speak to someone at UKMasto via their email! I wish I could help more.

[Jess-UKMasto Partner in reply to floating_]

Guy's and St Thomas's does see many mastocytosis patients but isn't a reference centre for MCAS. Lisa, I will send you a pm.

[floating_ in reply to Jess-UKMasto]

Is it not? My diagnosis is MCAS and I go to St Thomas'! Thanks for the heads up though.

[Mastomum]

Hi Lisa. I am in same position here. I did get a Gp to prescibe ketotifen and I take cetrizine and bisoprolol as mine affects heart but here can't even get a Gp consultant. Was supposed to see immunologist and cardiologist last year but nothing happened. I joined Masto for advice and so desperate would pay private consultant but so far still lost and alone with this condition. I do manage the condition by eating low histamine food which really helps along with meds but times when I get ill my condition is worse. What symptoms do you have?

[Lisacunningham68 in reply to Mastomum]

Yes I am the same seem lost and alone, I am just at a loss and very frustrated, IWould pay private as well if I had to

[Lisacunningham68]

It’s so hard being refused when I had it perfect when with dr Helbert who is retired now, just struggling really bad I have come out in huge lumps in my arm that’s growing at a fast rate my dr don’t even know what it is, but doesn’t know where to send me, just fed up of why should we have to fight to get what we deserve

[Stone17]

Hi , I have Indolent Systemic Mastocytosis. I see a consultant at the Beatson in Glasgow (haematology dept). Was referred there by my local hospital in 2012. Pre covid I was seen annually but recently only by telephone. Bloods done at GP surgery when required. Good luck.

[Lisacunningham68]

Yeah we tryed there I need imuneology I have a few bits going on and everyone just backs away from me it’s very depressing and has started to get me down

[Agatha_33]

Sorry to hear that you are struggling to access a knowledgeable doctor. I see Dr Gratten privately - COVID in that respect has helped as we do the appointments online which avoids a long journey. I haven't found the local NHS immunology services to be particularly that helpful - so could be worth considering. Message me if you require Dr Gratten's details to make an appointment.

[Mastomum in reply to Agatha_33]

Hello Agatha, I would like his details please. Did you have to be referred? Or contact him/her direct. Thanks

[Agatha_33 in reply to Mastomum]

Dear MastomumYou can refer yourself privately to Dr Gratten. His email is [e-mail] or contact his secretary Judith on 01953 607372. All the best with this.

[Mastomum in reply to Agatha_33]

Thanks so much. Where is he based?

[Agatha_33 in reply to Mastomum]

He does NHS work in London but privately works out of Norwich. However one blessing of the pandemic is that it is possible to avoid the travelling by doing online appointments. All the best.