Sticky Blood-Hughes Syndrome Support

Good news but the frustration continues

Today I went to see my very helpful rheumatologist, he thinks I and the children should be referred to St T's for that elusive referral, meanwhile my husband went to my surgery to ask our very nice GP for a referral, this for all bases to be covered. The reply, he would try and apply via 'special measures' to the top of the PCT for my referral, as apparently the jury is out to whether Hughes Syndrome exists, and of course me being seronegative, and the likelihood of the children testing the same way. This dangerous, worrying and downright awful. He felt it might be unlikely that we be successful, this in a PCT who boasts loudly that it has 'world class commissioning'!

2 Replies

Keep your chin up Mary. As hard as it sounds, even if you have to battle, the difference you will be making to the next person who comes along is great. I am sorry you are having a really hard time but keep pushing for what you believe to be right. You will get there. The St Thomas' referral looks positive so we'll keep our fingers crossed for you.



Thanks, hope everything is now landing in the community section as that is what I set it up to do!


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