Angry and disappointed

For goodness sake, this is proving to be more challenging than my degree. As I have said before I was referred to the haematologist on 12th November and the hospital website quotes a 2 week waiting list for appointments. Yesterday I rang them (5th time it has been chased up) and was told a letter had been sent to my gp. I was in the surgery this morning with my son and asked the receptionist if she could check my notes. She said there was a letter from the haematologist but it was too long for her to read and she did not understand it. I asked for a tel consultation with the GP to discuss it and she offered me 9th March which is too far away for me. She said had it been an appointment then the hospital would have written to me or the GP secretary would have contacted me to tell me to come and collect the appointment letter. I have just had a call stating the GP wants to discuss it with me but the earliest tel appt is 7 March, which I have accepted. From this I can only assume the haematologist has refused to see me. Had enough of all this nonsense now (trying to use non offensive language). I did fill in a patient survey while there which was more bout today's appt with my son which I could not fault, but it dd ask how can the surgery improve so I said GPs can read guidelines and receive training in pa and B12d. I may as well give up seeing medical professionals about this condition and just continue to treat myself with vitamins and injections. As for finding a cause that is clearly not going to happen

5 Replies

  • Poor you, its so frustrating, but im learning rapidly that if you want to heal, you have to do it yourself as much as possible and i only joined last august. so many seem to be in this rocky boat its about time some gps got dragged on board too!

  • It seems that way and my faith in the my trust at primary and secondary level has been completely destroyed. I will not be in a hurry to go for an appointment for myself. unfortunately my son seems to be b12 d too and I need to persuade the GP to give him B12 jabs just to ensure there will be no reaction then I can inject him from that point on. I have been let down loads recently by my trust (not just about B12d).

  • Having posted this comment myself i began to wonder if there are actually any gps who suffer b12d and if they dont why the h... Not! And what do they do if they have? Go to the nurse for a sneaky top up or do it themselves.

  • There probably aren't very many GPs with b12d. This seems to be more of a woman's illness and PA is considered to be a rare disease. With more women becoming doctors it is more of a possibility. I have read about some nurses with b12d.

    I think if diagnosed early then people's lives aren't shattered like those of us who had a late diagnosis. Medical personnel are more likely to discover it earlier, but not always as one of the people in this YouTube video about B12D was a doctor:

  • I requested a copy of the letter that the haemo has written to my GP but the GP has said it is complex and she will discuss it with me in 3 weeks on the phone. I was most insulted as I have to communicate with consultants of all kinds and understand the care plans they write for my job. How dare she infer I will not understand and it is my right to see info about me. The haemo's secretary, however, said yes she will send a copy today ;-) If I do not understand any of it I will keep the tel consultation with the GP, if I do I will cancel the appt. Once I no longer need to see her I am changing surgery and putting in a SAR. Had enough of being treated like a brainless moron. I need to get my son moved asap just to get his treatment started before he becomes worse as they refuse to treat him at all and his B12 and folate are dropping, they were going to treat him but the mma came back at 0.27umol/L so they have said he is not B12 def after all. I am also going to put in a compliant with NHS England because the practice manager never got back to me and just let the GP deal with the complaint, despite policy stating he will get back within 3 days.

You may also like...