Sticky Blood-Hughes Syndrome Support

Latest hospital trip

Well I see various consultants and yesterday went armed with my usual questions and update on latest visit to ST T, but I did not get half through what I wanted to say and he was already writing out my appt sheet, I thought, I cannot take this anymore and so I did not bother saying anything else. I felt that because I am a complicated case and have been referred to St T that they have washed their hands so to speak. My confidence at ST T is brilliant but here, very low. Has anyone had this type of appt where it has not got anywhere? This particular consultant had received letters from London but he just did not read them.

4 Replies

Hi there, this does not sound good. I wonder if there is anybody living in your area who sees anybody else, who is a little more upbeat. It might be worth asking, and then seeing if your GP would transfer you. How do you get on with GP? are they supportive. I am glad that you have St T's in the equation, however I also understand your frustration! Mary F x



Thanks for replying, I have been seeing this Hept person for a good number of years, but felt that yesterday it did not go to plan and the time was ticking by. My GP is brilliant and she understands so well, for years she was always trying to get the consultants together to just know what was going on, but although it was promised, it was never carried out. When I went to have my bloods done yesterday, INR included, I was kept waiting for ages and the Haem ward said that they had more serious patients which I understand, but at times feel that they do not quite understand APS


Oh dear, you need to write a clear list of points and go and visit your GP with you very valid iist of gripes, this is important, your GP will then be reminded to fight your case. Do let me/us know how things pan out. Mary F x


Hi Daisy. Really sorry you had a bad experience with your local Hospital anticoag Clinic. This does not surprise me at all TBH.

I had awful problems which my GP also experienced until I wrote into the Hospital and complained. After three such letters they finally 'got it' and I was asked to go in and meet the heads of pathology and some other service about making changes to the Dept.

I went armed with loads of info which took them off guard, for instance they had no idea how many of their patients were in the therapeutic range! They refused to allow self testing and yet were swamped with new patients but had less funding and had no idea what it was costing them to do the things they were doing, how many patients were going to turn up on any single clinic day or what that would mean for associated treatments and clinics.

I had a follow up meeting with them yesterday and we went through the changes they either had implemented or were in the process of doing all because I had highlighted things from the patient prospective. They were quick to point out that

unless someone tells them some things they will not necessarily know although I think that was a bit of a cop out TBH. Following my letters the CEO had paid a visit and called the area 'toxic'!! A good description and I could not have put it better myself.

I suppose the point is, this is your local Hospital and you should not be made to feel like that. If you can take the time to write a letter, it sometimes can have the right affect and then you will get the respect and treatment you deserve.


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