Polycythaemia Vera Care

[CarolineL]

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.

[Erica]

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.

[CarolineL]

@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.

[Emma_BloodCancerUK]

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)

[Nichola75]

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

[Duncan]

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.

[CarolineL]

@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

[PollyVera]

@CarolineL - goodness me, what an absolutely horrible time you are having. We do not want you falling through the cracks and being written off just because you had been stable for so long. I hope you get some resolution and proper care asap. Best wishes.

[Nichola75]

Just checking in to see how you are doing @CarolineL ?

[CarolineL]

@PollyVera Exactly this! I completely understand prioritising patients who are unwell, but that doesn’t mean you can then forget about your other patients and not monitor them as they will become unwell again too, and then you are causing a bigger issue to solve which surely puts undue and unnecessary pressure on an already underfunded service!

[CarolineL]

@Nichola75 Thank you for checking in - I really appreciate it. I have my venesection at 1pm today so am hoping to have some relief from symptoms after this, but I haven’t heard anything back from the GP surgery or PALS so am feeling even more frustrated. I did send quite lengthy e-mails so if I’m being generous I would say they are working through them, but the cynical side of me thinks that they are hoping I will simply not follow up or let it go. Sadly for them I am very tenacious and I won’t be letting this drop - my health is too important for them to take chances with!

[Duncan]

Oh @CarolineL, back to that frustrating waiting… But you’ve got the ball rolling which I’d say is excellent self-care. Perhaps they’re taking time to respond as they know they need to get their ducks in order first considering their errors?

I hope the venesection passed uneventfully and you get a nice boost from that. It’s my blood test week FKA phlebotomy week so I may be joining you for bloodletting too! Don’t forget your post-venesection treat

Thinking of you @CarolineL, hope that vegan festival was lots of fun!

[Jonpd]

Oh what an awful experience.

I had Polycythaemia Vera for 24 years and during that time I had regular appointmenrs with my consultant to monitor my blood levels. At the end of each appointment they would make the next appointment. If I needed a venesection it was done at my appointment.

Polycythaemia is a illness that needs regular monitoring and I hope this is the outcome that you will get soon.

[CarolineL]

@Duncan Venesection all went fine yesterday but still having headaches today. This could be down to iron levels as they were super low (around 3-4) prior to the venesection. Equally it could mean I require another venesection. In either case, I need to see Haematology for them to check my blood count and/or address the iron deficiency. The nurses yesterday said they would chivvy them along for an appointment, but if I hadn’t heard anything to give them a call and they would see what they can do. Hopefully I can get sorted soon as this is getting old, fast!

The vegan festival was small but good. We were mainly interested in food and there was so much good food there! Some of our favourites was a Hug Roast Sub (based on a Hog Roast!) and some gorgeous oriental fayre including ‘chicken’ drumsticks, filo wrapped ‘prawns’ and ‘chicken’ satay skewers. We tool home lots of pastries (vegetable bakes, ‘pork’ & apple pie, ‘chicken’ & mushroom pie, 3 different types of vegan quiche), scotch eggs, a garlic baguette, and some gorgeous cashew cheeses (smoky, herby, truffle, spicy and a parmesan) We wanted so much more so clearly we need a bigger fridge (note to self when refurbishing the kitchen!)

One interesting stall there was raw cacao which they made into a hot chocolate by adding a couple of pieces of cacao, a cup of plant milk and a smidge of agave to a pan and gently heating (not boiling!) It was really delicious and is a natural way to boost iron and zinc. We bought a big bag as figured a little help with iron won’t go amiss and probably far less intrusive/strong than iron supplements considering iron isn’t always our friend as PVers!

Wishing you all the best and fingers crossed for your blood test. I hope your levels are stable and that you can avoid a venesection!

[CarolineL]

@Jonpd It really does need regular monitoring, as without it we get into situations like this! Whenever I get a Haematology appointment I will be raising all these issues and firmly stating that simply because I am stable for a few months they cannot simply leave me to my own devices as Polycythaemia vera (PV) is so changeable. They also need to act a lot quicker if they get an urgent referral, not sit on it until chased. The annoying thing is that the nurse yesterday said they were really quiet last Monday so had Haematology actually done their job and sent the referral through in the morning then I could have been seen a week ago. Another thing to raise with PALS if they ever deign to get back to me!

[Duncan]

Aw I’m really so glad it went well @CarolineL, but sorry to hear about the ongoing headaches. Hopefully that’ll improve with simple changes to treatment frequency, like you say

As for those other health-related annoyances, you’ve clearly got your specialists linking up better already, so excellent! I hope they keep on top of your appointments better so you don’t need to so much. Couldn’t help but wonder if stress might have worsened those headaches you’ve been having?

I have to say my mouth was watering at your descriptions of all that delicious food!!! Oh my I do love pastry I got back into baking during the pandemic (like everyone else!) and can make a mean vegan chicken pie now!

Still trying to find good enough vegan cheeses over here though—I love Violife feta, and there’s a brand here called Good Planet whose cheeses melt and brown properly and taste pretty good. There’s also a local vegan creamery called Miyoko’s that gets raved about but I’ve never enjoyed. I really miss proper strong cheddar, whenever will someone create some?! I used to like Scheese but that’s not available over here. Oh the travails of being a fussy vegan!

Thanks for asking about my blood test. I got to see the lovely phlebotomist who originally took my blood that found the JAK2 gene mutation, so that always feels like another chance to thank them and feel awe at such a simple procedure saving my life! My haematocrit result came back already at 44.7 % so all is well for another month

Be well dear @CarolineL!

[Nichola75]

I’m glad it all went well and hope your headaches have eased a little?
The festival sounds great, especially the hot chocolate! Take good care of yourself and keep us updated on how you get on with PALs. They should have timelines they have to adhere to so check that out x

[CarolineL]

@Nichola75 Thank you and thanks for checking in - it’s very much appreciated.

I’ve had a pretty generic response from PALS today, which hasn’t addressed any of the issues and simply said you’ve had your appointment now so should be sorted, how do you want to proceed?! Unbelievable!

I have duly responded and given them a list of questions I want answered and said that the issues with the Consultant who said I was fine and who disparaged her colleague, needs to be addressed even if it necessitates me making a formal complaint. I’m reticent to do that, but she can’t misdiagnose patients and tell them they’re fine when just over a week later I had a venesection!

Headaches have subsided, but now I have all the low iron symptoms as I’ve been stripped of iron again with the venesection, so feeling really fatigued, spaced out, and weak. I can’t win! This is another thing that Haematology need to address as everyone else is too scared of worsening the Polycythaemia vera (PV), but so far all they have done is told me to eat more leafy greens etc. which I do anyway but which is having zero effect as my iron is at all time low of 3, and that was before the venesection. I despair!

[CarolineL]

@Duncan Headaches have subsided but now low iron symptoms have kicked in (see above!)

Just had my follow-up appointment through and it’s not until 19th March - another 5 weeks! In the meantime, we have no idea if the venesection has worked or if I’m under my threshold. Surely the blood test should be done sooner than 5 weeks just in case I need a further venesection? It is now utterly farcical and I am losing all faith in my healthcare team. I can’t even go private (not that I would want to as I don’t really agree with tiered healthcare) as insurers won’t insure existing conditions!

On a brighter note, the food from the vegan festival was top notch and well worth it! (see attached pictures) Just the cashew cheeses to go but we might have a lovely vegan cheeseboard this weekend to sample those. I hear you with the vegan cheese search, but we’re quite fortunate in the UK that there are plenty of small, independent artisan vegan cheese makers. There are 2 which have got into some of the main supermarkets (M&S and Waitrose) called Honestly Tasty and La Fauxmagerie. Honestly Tasty do stunning vegan cheeses (Bree, Shamembert, Blue, Garlic & Herb) which all my non-vegan friends have loved when I did a fully vegan cheeseboard. La Fauxmagerie are a London based company who also do stunning vegan cheeses including a fondue, Brixton Blue, Balham Blue, and Shoreditch Smoked - all are delicious! Waitrose also do Kimcheeze which is a semi soft cheese alternative made with cashew nuts, kimchi brine, and coated in red chillies - very nice indeed with a good kick of heat! More mainstream ones available are Violife as you know , Sheese (they’re still going strong and do most of the supermarket own brand cheeses), and now even Cathedral City have brought out a vegan cheese (block, slices, grated and mature cheddar spread) which are all excellent and certainly stave that craving for a strong cheddar! I’ve given the slices to so many people and they didn’t even realise it was vegan! Laughing Cow brought out a vegan version of their triangles (sadly not great), Boursin have a vegan version (pretty decent) and now even Dairylea have brought out a vegan version of Dairylea Dunkers (delicious!) so hoping they will bring cheese triangles out soon. The Good Planet ones in the US sound fantastic as I long for a vegan cheese which browns nicely and doesn’t just burn! I’ve been hearing good things about liquid mozzarella which apparently goes stringy and brown on top of pizzas etc. but yet to try my hand at making it. Honestly, you’ve got me on my favourite subject here so I could bore you for hours!

Love the sound of your vegan ‘chicken’ pie - yum!

So glad that your blood results are under your threshold so you have a month free of being a human pin cushion! Long may it continue.

Sending much love and take care of yourself.

[CarolineL]