I’m feeling really frustrated with my care at the moment.
I was diagnosed with Polycythaemia vera (PV) in March and after a series of venesections my levels were all stable. I was on 75mg aspirin every day and all was going well. In July 2023 I started to get severe headaches so had a further venesection as well as my consultant booking a venogram (CT scan with dye). This consequently revealed thrombosis in one of the channels of my brain. I was put on Warfarin but later changed to Apixaban and everything has been going really well since and I haven’t needed any further treatment.
I am supposed to be seen by Haematology around every 3 months, but my last appointment was June 2024. As I hadn’t heard anything from them, I phoned in late September to enquire when my next appointment would be and was told that I was on the waiting list as they had a backlog of up to 12 months! I was told that if I started to experience any symptoms then I should go to my GP who could then make a referral for an urgent appointment. This has been the cause of some anxiety as there is no guarantee I can get a GP appointment quickly and even if they did refer me it could be weeks more before I see Haematology.
About 3 weeks ago I started to get headaches again. At first I thought it was hormonal or iron related, and then I got a head cold so thought it was to do with that. When my cold dissipated but my headaches didn’t, I realised it was probably the Polycythaemia vera (PV). I duly made a GP appointment and when I explained about my condition I was seen that day. I explained my symptoms and my threshold and they took blood tests. I then received a text the next morning stating that my blood results were satisfactory and that my levels were “stable”. I was surprised at this as I felt sure that the headaches were a result of me being over my threshold.
I still felt no better the next day so decided to review the blood test results myself on the NHS app. To my utter horror my haematocrit levels were at 0.51 (my threshold is 0.45) so my results were not “stable” at all! I got back in touch with my GP who then immediately made an urgent referral to Haematology, but a whole day had been wasted with no progression and it was now late Friday afternoon. My husband was worried about me so phoned 111 and after several assessments I was told I should go to A&E as my “symptoms shouldn’t be ignored”.
I consequently spent a long night in A&E where they reran my blood tests and confirmed that my levels were too high, did a CT scan, and then admitted me for the night to do a venogram in the morning and an emergency venesection. I didn’t get a bed until 12.30am and then wasn’t seen by a Doctor until lunchtime, who then proceeded to tell me that my blood results were fine! When I pointed out the haematocrit and platelet levels were above my threshold she dismissed this and said “Well who told you that?” I said that I knew it myself and that the Doctor the previous night had agreed, to which she said “Well he’s a junior doctor” which was highly unprofessional. They said they would speak to Haematology but that they themselves couldn’t do a venesection, which rather begs the question of why I was admitted in the first place. Haematology confirmed that my levels were above my threshold, that they should do a venogram given my thrombosis history, and that I needed to be booked in for a venesection early next week - everything the junior doctor had stated! I had the venogram which came back clear of any thrombosis, either new or historic, and I was finally discharged after a full 24 hours at the hospital but with absolutely zero progression.
Yesterday, I waited for a phonecall from either Haematology or the suite where the venesections are done. When I’d heard nothing by 1.30pm I phone the suite and asked if they had had a referral for me from Haematology which they hadn’t. I then phoned Haematology and explained who said they were surprised it hadn’t been sent if I’d been admitted. They then found the referral which they had done nothing with, but said that they would send it to the suite “urgently” - it was now 2pm. I phoned the suite at 3.15pm to check if they had received the referral and they said that someone would call me back. When I didn’t hear from them I then phoned again at 4.35pm and was told that whilst they had received the referral the Ward Sister had gone home as she finished at 4.30pm. They apologised and said that they thought she had already phoned me, which she hadn’t. They promised to call the following morning.
This morning the suite telephoned and said that I was booked in for 1pm next Monday. When I questioned this and said that I was told I had to be seen this week, they simply said the Doctor shouldn’t have said that as they were not an emergency ward and were filled to capacity that week. They advised that if my symptoms worsened to go to my GP or to A&E which is totally useless advice as my GP can only refer me to Haematology and A&E can’t do the procedure! In the meantime my levels are creeping up and I feel totally wretched and worried.
I know that the NHS is under pressure but I fell totally let down. I have been passed from pillar to post and faced with negligence, incompetence, and dismissal along the way, yet I am still no further along with a resolution.
I was always told that if I had symptoms inbetween my Haematology appointments that I could call and they would get me an emergency appointment, now that appears not to be the case yet they are also failing to monitor my health and levels at all, leading to instances like this when the NHS is now haemorrhaging money for my care unnecessarily. Despite me being admitted and needing an “urgent” venesection I am now being told that I need to wait a full week, whilst all the time my levels will be creeping up and up. Do they want it to get to an emergency level - like a stroke - before they will actually treat me? Surely preventative medicine is better than reactive and would keep NHS costs down?
I have complained to my GP surgery about their misreading of my results, not that anything will happen, but I now feel totally alone as no-one is taking me seriously and they are gambling with my health.
Thank you for listening.