Vasculitis UK
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I may scream!

Went to GOSH today for scan and afterwards to see consultant as instructed on Friday. Grace had to be carried in as her leg muscle is really hurting and she had no sleep because of this . All her joint and new ones shoulders and hips all rated at 10/10 for pain. I thought ( sounds awful) but great they will see her ill!

No they would'nt as no recorded of Grace today!!!!! Thankfully I took ipad which had emails to and fro about Grace being seen today. We have to go back Friday to see another doctor who wants to do all the tests she has had all again. Her hands and arms are really bruised ( which doesn't normally happen) from Fridays blood taking, surely the have enough!

Well I have no emailed a length letter to the consultant she is meant to be under asking what is going on as we where meant to go in for a few days?....what the time scales we should be looking at etc. I really feel unless her life is endanger know one is taking us seriously. I am sure this is not normal .......... My next step I guess is to involve Pals at the hospital ?

One fed up mother!!!!

3 Replies

Oh no, what a nightmare for you both, can't believe they didn't see you as agreed. I am afraid I would have stood there and cried ( I have done this when I felt really low in the past). Yes you definitely need to email and call and generally be a pushy mum! You will be doing it for a very good reason. I wish I could do more than just say I am thinking of you both and wishing you luck x


How awful for you and your daughter. I think all of us would rather go through this ourselves than have to watch our young children suffer. I agree with Lisa you need to keep on at them, we all need to be a bit pushy at times. I think it depends on the person taking the blood, sometimes they leave big bruises sometimes they don't. Good luck



My advice is to speak to the hospital's PALs service and ring up the consultant's secretary to explain what is happening and if that fails ask to speak to the medical director. It is really hard being pushy I know when I'm sure you want to put all your energy in caring for your daughter. I do hope she gets the care she deserves.


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