Best hospitals for Treatment of GPA

[Clairabella46]

My husband was diagnosed with GPA (Wegeners at the time) in 2012. He has been treated since by the Worcestershire acute hospitals Trust, but we are becoming increasingly frustrated at how slow Doctors are to act whenever he has a relapse. He has recently become unwell - his ANCA is positive and he is in terrible pain, but we are constantly having to chase the hospital to get his rituximab treatment sorted. Can anyone recommend a better hospital to be treated so that we can use our right to choose under the NHS???

[Ping62]

I was diagnosed with GPA 5 years ago and had excellent treatment at the QE in Birmingham. But, I've been lucky, I was diagnosed early and it was brought under control pretty quickly and I'm just on a low methotrexate dose now.

[Clairabella46 in reply to Ping62]

Thank you....we will be looking into alternatives for the long term even if he has to travel.

[Mooka]

have you called the helpline to ask for your nearest hospital with a specialist unit for vasculitis? I transferred my care to Addenbrooke’s which meant a huge improvement in my care.

[Clairabella46 in reply to Mooka]

Yes I have been in touch with the helpline already and doing some research of places being suggested. Thank you.

[SparkleGinger]

Good good evening,

I am very sorry that your husband is in pain and is having a flareup.

I too am with Worcester Hospital. I am with the rheumatology department who seemed to take the lead as I have respiratory and renal impairment. I have MPO. ANCA. But was only diagnosed in November 2024.

I too was quite frustrated about the speed of my first infusion. Mainly because I was given four different dates - 6 weeks apart, and I just didn’t know what to do, where to turn, or who to speak to.

Eventually it took just over four weeks to get my first infusion, and my second one went smoothly two weeks later

. Might I ask who you are under?

I have also tried ringing the Rheumatology Advice Line when I need help, but realise now that they only work for a couple of hours each morning.

Do you have a direct line to your consultants secretary? I have found that this is a good way to communicate quickly with my consultant.

I do know that the Rheumatology department in my case said they take their lead from the QE in Birmingham. Also the National vascular Centre is in Bristol at Southmead.

Both of which are within an hour of here, so it might be worth investigating if you are not getting the treatment that you feel your husband should be accessing.

I do hope things become easier.

Let me know.

Best wishes, Jules 👍🏻

[Clairabella46 in reply to SparkleGinger]

Thank you Jules. I won't mention specific doctors names but yes, it's Rheumatology. It just feels like such a slog whenever he has a relapse, to get the right tests done quickly and to get some treatment started. He can't have methotrexate or aziatiapine because of neutropenic septicaemia in 2015 so he has to wait for infusions. He has today been invited in next week for a rituximab infusion but given he's been going downhill since October, it feels a long time coming. He is also treated at the QE for a subglottal stenosis caused by the GPA but they do not lead. Think we will ask for a referral to Cambridge or Bristol. Thanks again for getting in touch, and good luck with your own journey.

[Electra1]

Hello, so sorry to hear your husband is so unwell. I too have GPA, but it is in remission. Referring myself to Addenbrookes, Clinic 12 was the best decision I ever made. They saved my life without a doubt. I travel for 3 hours to attend my appointments, and another 3 hours home, but I wouldn't have it any way. They have helped me for over 14 years......marvellous, kind, thoughtful professional. Contact : Dr David Jayne, Clinic 12, Addenbrookes, Hills Road, Cambridge. I hope you get the help you need and deserve.