I got a letter from the anti coag clinic because I did not attend for my last appointment. I had already seen my gp about the clinic and told him the reasons why I did not want to go there. The reasons were mainly to do with the way they treat patients and also the fact that everytime I go for a blood test I have to have a venous sample not a finger prick and they never get the blood first time with the needle. It is not unusual for them to have two or three attempts to get the blood.
The last time I was there it was traumatic. I don’t use that word lightly, as someone who used to have a phobia about needles and had managed to conquer this it left me scared to go back. Three different nurses attempted to take blood. Two of them did not speak to me, the one who did called me love!!! The first one spent the whole time she was trying to get blood telling the other people in the room what awful veins I have.
Not only have they left me not wanting to allow them to put needles in me, they also will not support my consultants treatment of me. My consultant is a leading expert in the UK and I have to go to London to see him rather than the local hospital where this problem is occuring. He has said that I am a suitable candidate for home testing. This means spending over £300 on a machine, as the NHS do not supply them. It also means that I have had to talk to my GP about if he will prescribe the testing strips. If not then we would have to pay for that as well. My GP’s attitude was that he would prescribe and he had no problem with me self testing, but it was up to the anti coag clinic.
Today I realised that I must do something as the anti coag clinic were expecting me to attend next Tuesday. Also I have been feeling bad today. Over night and today I have felt really breathless. I rang the GP and have an appointment for tomorrow morning. Might sort out some extra pillows tonight. They were not helpful at all, telling me that I could not have a finger prick test. They asked if I could take the letter that my consultant sent them (I have a copy of it) as they did not seem to have it. They also said that I must see the doctor in charge of that clinic to change any treatment. The doctor they named is that one who did tests in 1999 and even though I tested positive for APS did not do anything, in fact no one ever told me about this let alone treated me. It was nearly 10 years before I saw the doctor in London who started treatment. When you consider that not so long ago patients with lupus were given a life expectancy of 10 years I feel blessed to be alive.
The end result with the local anti coag clinic is that they said I could not have the finger prick test. I told them I was not allowing one of their nurses to take a venous sample. They would not allow me to either get the bloods done somewhere else, or get a finger prick test locally to me. So I am under the impression that they have discharged me from their care. I find it appalling that they can overide my consultant.
I also rang the local PCT (Primary Care Trust) as my husband kept on at me to do this. I found the number of PALS (Patient Advice & Liaison) and rang them. The lady I got through to was helpful and gave me a lot of advice. She started off by saying it was courtesy to see the local clinician. I told her that this consultant was the one who had missed the diagnosis 10 years ago. I could have sued, but all I want is to be treated properly. This lady at PALs was very encouraging and gave me some advice as to what to say to my GP tomorrow.
I don’t know what will happen tomorrow, or how things will turn out. But I do know that with the support of my family I will not give in. We all deserve to have the best treatment available, and it should not be a case of only those who can afford to go private or those who shout loudly get the right treatment. But unfortunately this often seems to be the case.