Polycythaemia Vera Care

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.

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Oh @Carolinet your frustration really comes from your post, thanks for taking the time to write such a diary.
If you wished to pursue the matter then you might consider The Patient Advice and Liaison Service (PALS) at your local hospital.
You have the details all above and you might have to consider what you wish the outcome to be.
Do you know it is the stress, hard work, fatigue and medical issues that sometimes puts me off pursing issues.
Really look after yourself and be very kind to yourself and please do let us know how you are doing.

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@Erica - Thank you for your kind words as always.

Apologies for the tome but I was just so frustrated! No-one listens to what you are saying and yet they keep telling you that you are OK when you know full well you are not! By the time they see me next week I will have had a headache for 4 weeks and every single day for 3 weeks - that is not normal and it is not OK!

To be downgraded from urgent status at the weekend, to now fitting me in whenever they feel like it with no further tests or assessments to ascertain this is the correct way to proceed, just seems to be the wrong path - it’s almost as if they want me to get to emergency levels before they will actually treat me! In the meantime, I’m left panicking and worried that my levels are creeping up and putting me at risk of blood clots, thrombosis, strokes etc. It’s all very well them saying that my medication ‘should’ keep that in check, but they can’t know that for certain.

I’ve contacted PALS this morning, largely based on the above information and with additions from my complaint to my GP yesterday, but I am not hopeful of any change in care as I feel completely disillusioned and let down.

I love the NHS and am well aware that it is under pressure, so I really do hate to complain, but they are playing with my health here and taking a gamble with it which simply isn’t good enough.

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Hi @CarolineL ,
Thank you for your post and sharing your story.

We are sorry to hear what you are going through, this all sounds incredibly frustrating for you. It is good that you have contacted PALS as it is also what I would have recommended and hopefully they will get back to you in a timely manner and with some useful suggestions.
If you need to talk things through with us, or feel you need further support, please give us a call on 0808 2080 888.

Best wishes,
Emma (support services nurse)

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Hi @CarolineL.
Im so sorry you’ve had this experience and am really pleased you have contacted PALs. I hope they het back to you soon.
Please keep us updated on how you are doing x

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Oh @CarolineL! It’s so lovely to hear from you, but I’m just so sorry to read how rubbish and confusing your recent care has been. Perhaps it’s been rather scary too, considering that you know what to look out for in your blood tests and in yourself.

I just wanted to say I’m really pleased that your venogram came back clear of signs of thrombosis, that’s got to be a relief. It’s excellent that in this time of great stress you’re still able to seek care and offer yourself self-care. You’ve got that venesection coming up and your haematocrit is above 45 % but thankfully not super high, so hopefully you’ll have no further issues from that and soon enough your blood will be thinner again.

But WTF was going on with those medical experts?! By the sounds of it you really were passed from one to another, no wonder they kept making things more confusing when you knew what you needed. I’d feel let down too, angry, and a bunch of other things I dare not say in a public forum. Thank goodness you knew to advocate for what your treatments should be!

I’m glad to hear you complained to your GP surgery. Maybe they’ll make more effort to train their staff better thanks to you. It’s also great that you’ve contacted PALS—I’d say this situation definitely requires their liaising so you don’t need to hold all this stress and organise your treatments alone.

I can tell you love the NHS, as I do, and it’s so hard when you want to believe they’ll do the right thing but then mess up. Something that might help maintain your trust in the NHS overall whilst letting you remain understandably angry and motivated to make changes with the specific Trust that is treating you is keeping in mind that not all regions or departments within a region will be so rubbish. Maybe yours were having bad days, maybe they’re systemically bad, maybe it’s that one highly unprofessional doctor who needs to learn. I don’t know where you are in the UK, but unless you’re out in the sticks you probably have other options. I’d start with a new GP, either within that surgery, or seek out a new one altogether who has some passing understanding of haematology and maybe even blood cancers. Absolutely make official complaints about that ‘senior’ doctor who told you incorrect information about Polycythaemia vera (PV) that you actually know more about. They should not be speaking to you about junior doctors or any colleagues as they did, like you said.

Perhaps your GP, new or otherwise, might do well by booking you in for your blood tests and other appointments a year in advance so there’s no excuses about them not being available nearer the time of need. I try to have at least my next 2 booked in months ahead so I don’t get anxious about being fitted in (slightly different system between here and there, but functionally similar).

As blood tests are so vital to our treatments and living well with Polycythaemia vera (PV), the above might be a suggestion your GP would agree to. You could even point out it will save them money as you won’t need to be in touch so often if you all know when your tests will be.

Am I right in thinking you get complete blood tests every 3 months? I’d be tempted to ask for them to be more frequent for now while your haematocrit is raised above your threshold. I have my CBCs monthly and then, if necessary, have phlebotomy a couple of days later if my haematocrit is higher than 45 % like you.

I know it’s not easy to think about shifting your care and medical records over to a different practice or GP but you have a long life ahead of you. I bet you don’t want to be dealing with this poor, anxiety-provoking level of care again. That would be enough to motivate me to make a change, but I understand there might be reasons why you can’t. In which case, your current surgery really needs to show you they’re worthy of receiving funding for your care and to help rebuild your trust in them.

I know you’ve got this @CarolineL and will make the best decisions for your care. I’m really glad you’ve got your husband supporting you too—I imagine all this stuff takes up a lot of headspace and energy. Make sure to find healthy ways to relieve yourself of that very understandable anger and anxiety. Have you got any treats planned? Time to go for a fancy vegan meal, I’d say!

Thinking of you. Please let us know how it goes and what happens with PALS.

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@Duncan Thank you for your lovely message and it’s so nice to hear from you too!

Honestly, the amount of times I have had to explain my condition over the last week is ludicrous. I understand that Polycythaemia vera (PV) is rare, but if you are not a expert in it yourself, then listen to the person who is - i.e. the patient who has to live with this and is probably far more well versed!

The Consultant I saw on Saturday was an absolute horror - first telling me that my blood test results were fine and that I was in “normal” range, despite my HCT being at 0.51 and my platelet levels being at 480 (which had gone up 60 points from Weds-Fri) and when my personal thresholds are 0.45 and 400 respectively! She was quite adamant that she was going to discharge me until I queried this and then went on to disparage her colleague before reluctantly agreeing to speak to the on call Haematologist! As my husband said, if the Junior Doctor’s diagnosis was so incorrect then why was he allowed to see patients by himself without a senior Doctor present? I was so smug when the Junior Doctor’s diagnosis was vindicated by Haematology and they agreed with everything he had said and ordered which just shows he was more knowledgeable and more thorough than his alleged superior! She was totally dismissive and unprofessional and I will be pursuing that.

With regards to GP surgeries, although I live in a large town, sadly there aren’t many options in my area as all my local surgeries have been bought up by one group. I used to have a lovely GP who always spent proper time with you and listened, and he always gave excellent care. When he retired his surgery was bought out by a group (Heaton Moor Medical Group) so now I never see the same person twice and have to explain the whole situation again every single time I go. Conversely, they sent me a letter last year stating they were sorry to hear of my cancer diagnosis and listing all the specialists/nurses they had that were experts in cancer care and asking me to book an appointment to discuss my needs etc. - evidently this isn’t an across the board skillset given my recent experience! I didn’t actually make an appointment at the time as I was receiving regular care from Haematology at this point, but this may now be worth pursuing so that I can say I want regular blood tests (if Haematology are not able to do this presently), to be treated by someone who understands my condition, and to only see one GP for consistency of care and so I don’t have to explain my condition over and over again only to not be listened to anyway! If they cannot come up with a good care plan then I will investigate other GP practices and see if I can get better elsewhere - as you say, I do not want to have deal with this level of incompetence again, my health is far too important to be played with!

I was getting blood tests every 3 months as I was so stable, with my HCT levels on average no higher than 0.43. Since I’ve been on Apixaban, I haven’t needed a venesection at all - in fact my last one was in July 2023, so 19 months ago! Surprisingly, I still haven’t had any communication from Haematology so am wondering if they will even check in on me post my venesection on Monday. I will discuss it with the nurses when I am having the procedure done and see what their proposed next steps are. After an admission, you would expect that your consultant would like to catch up with you and see what’s been going on!

I am very fortunate to have a wonderful husband who is a complete rock. This is the last thing we needed right now too as his best friend of 30 plus years passed away unexpectedly 2 weeks ago at just 52 years old; his other friend, early 40s, was diagnosed with Stage 4 bowel cancer so is living 5 years at at time; and his brother’s best friend, mid-50s, who is like another big brother to him, has been given only a few months to live (cancer again). Now all of these shenanigans on top is just adding to the stress, but he’s still smiling, making me laugh and is always there for support. He’s an absolute star!

We definitely need some treats though! We’re actually going to a vegan festival on Sunday so hoping to pick up some treats and new products there. We have VIP tickets which means fast track entry and a goody bag each so something to look forward to and then only hours until my procedure when I know I’ll feel so much better almost instantaneously!

Will let you know how I get on with the GP and PALS complaints, and thank you so much for checking in and giving your thoughts - it really is appreciated.

Sending much love and keep well! x

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