Vasculitis UK

I need advice saw the wrong Dr again on Friday and felt belittled

Hello, this feels like its turning into saga!

Complained to medical sectary re mix up with not being booked into clinic on Monday after MRI scan and also Pals , put all correspondence in an email and cc in the Consultant we are meant to be under.

I received from the medical sectary an email back saying we had been fitted into clinic for last Friday and we would not be seeing the consultant we had been told we where with but a different one and that we would be forever under her. She also said the results from another hospital we attended last week would be in file for Friday and the MRI scan was normal.

Still no referral to ENT .

After her echo that just showed mild PR , thankfully , we headed to clinic.

Low and be hold the doctor that we where supposed to see did'nt even have a clinic that day , yet the doctor we had been told we where originally meant to be with was. Great we thought.... No she went off and we got the part time doctor , who could'nt give a damn. I have never felt my daughters pain, eyesight lose, thinning hair, mouth ulcers , rashes, chest pains not being able to walk, write,fatigue , expoisdes of extreme pain that make her pass out , so belittled.

Myself and husband checked everything in her medical file on the way to clinic, the referral was lame , it had no history from the last 10 months or previous glandular fever , yes blood test positive. It mostly went on about my my ulcerated colitis and could she be having similar problems. And then went on to say that he had checked her finger nail capillarys and believed it could be a form of vasculitis .

The file did not contain the MRI results , so unsure if its ok or not , it did not contain recent blood results as email said it would.

The doctor then went on to test for double vision as she did'nt believe us !!!!!!

She never asked my daughter what the pain was like or how she felt when she was checking her joints. The dr said movement was good. Physio says movement in right leg is awful ??? I asked about the slow capillary refill as Physio was very worried about this, she did'nt check it just shrugged her shoulders. ?????

Because she looks ok ( we as a family have a different image of her and I am going to take photos in to prove) seems happy, but is actual depressed. Doesn't complain when prodded , they are not interested. The doctor actual said I can not rule vasculitis out but I don't specialise in it the doctor you needed is YES the one we have been trying to see for 3x now!!!!,

I am angry , upset and to top it off a urgent referral to ENT was meant to be done , and has'nt although the Pals office having meetings with the ENT managers and next I believe Rhemotology . I never expected this kind of treatment or lack of care particularly as everyone says its so different at GOSH.

I had to take her to a doctor on Saturday as she got up and then within minutes was in tears holding her throat and looked panicked as it hurt so much , she said it was like being squeezed . She has a permant sore throat, so wanted o to rule out infection , the GP said no it was illness related and not infection and to take her to A&E if happened again or got worse., so far sore but not gripping pain that she had .

Why are the doctors just relying on blood results ( if they recieve them) and not looking at the whole picture. I was told that she would have biopsies done???.

Eleven months and the symptoms still here , and new ones but worse and the pain increasing particular in her legs , it's not normal for a seven year old to be screaming and agitated legs , feet and then pass out, not being able to hold a pencil why are they not listening, what can we do.

They have to believe me as I have photos , but I can see they think she is fine!

Help or just some sanity .

7 Replies

I am horrified! What on earth are they doing at this hospital? I wonder if it is worth asking your GP for an urgent referral to Addenbrookes, if you think you could get her there? I am not sure if they treat children but I do hope they do. You would need to have a clear reason for doing this, so take the bared down facts of what has happened, with the dates, with you to your GP.

I hope someone else on here can help further, you poor things!



Thank you, I will look into it as my faith has gone , I just can't believe they are not looking at the day to day diary and not at all concerned that she is aching all the time. I made the decisions that instead of coping at home when she has one of the really painful episodes that no matter day to night I will either call an ambulance or take her myself to A&E , I think I have done to much nursing at home....


Yes, do. Many years ago, I ignored severe pain in my 18 month old son because the doctors were telling me that there was nothing wrong. There was and irreversible damage was done. I have regretted it ever since.

Meanwhile, would advise an appointment with your GP tomorrow, to ask him to phone Addenbrookes vasculitis clinic (type these last 3 words into Google and you will have Addenbrookes vasculitis clinic home page with the phone number) to request an urgent appointment. This has gone or far too long already. Don't worry about insulting GOSH, it is your daughter who is important and the relief of her suffering.

Please let us know what happens. We are thinking of you!



I will do both of these thank you x


Hi Motherof4, I'm 72 and was diagnosed at 68. Pain excruciating and constant so can understand what your poor young daughter is going through. My GP didn't recognise my symptoms for three weeks so my wife (retired nurse) called 999 without hesitation. The paramedics simply diagnosed a panic attack but my wife insisted I was admitted, and you can. 6 hours later after blood tests vasculitis (Churg-Strauss) was diagnosed by the rheumatology consultant. All I can advise, as your daughter is in pain and definitely shouldn't be, is don't hesitate to call 999. It was the only option for me.


A workmate of mine has a daughter with an unknown medical problem.

The local hospital consultants are unable to diagnoses her.

He called GOSH himself and asked if his daughter can be referred there.

GOSH sent him a letter to give to his consultant confirming they would take her...

I think you now have the right to insist on being referred to your preferred centre of excellence?


Great ormond st hospital chief executives name is Jan Filchowski you could ask to speak to him and remind him of the hospital motto.....the child first and always


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