Blood test battle and more

[Naynay81]

Hi everyone,

I have found posts on this page hugely helpful and calming since diagnosis. Haven’t posted before and apologise in advance as this is a bit of an epic…

Relatively new to this so don’t know all the jargon as yet! My diagnosis; ET, JAK2+. Diagnosed after a TIA in Dec 2020.

Currently on 90mcg fortnightly of Pegasys- all going ok so far with treatment, thankfully.

I called my GP on Monday to book in for next week to be told I couldn’t have bloods done prior to my hospital appointment due to the national shortage of tubes. After a bit of a debate with the receptionist I was begrudgingly given an appointment at 7am the following morning.

I attended the appointment to be told again, this time by the nurse she was going to stop accepting blood forms from the hospital, this time due to a national shortage of needles?!

It had really been playing on my mind, especially as everything seems to be such a constant battle when it comes to my health these days.

I called and arranged to speak to a GP today to get some clarification on this and to ask (as my practice nurse SIL suggested) whether I could get an exemption certificate for prescriptions.

The GP asked me to put forward my argument to continue to get bloods done when they weren’t now offering this service?

I responded that whilst I understood there had to be thresholds etc during a shortage my blood tests were necessary due to my diagnosis of an MPN, that I had ET etc and regular monitoring was important to keep me well. The past year had been incredibly stressful etc etc on and on.

In all honesty I felt like crying by the end of my prolonged self-justification. After deferring to one of the GP partners for a decision he confirmed this had been ok’d…

Phew, battle one won.

Then we moved on to exemption: I explained again my diagnosis and was told by the GP that ET is not a blood cancer, it is a condition. Therefore it was unlikely that I would be eligible for an exemption certificate.

I questioned this as my consultant seemed to think differently and my understanding was that it was classed as a cancer due to the way cels reacted etc etc

I was told he worked in Haematology before general practice and I did not have a cancer.

I pushed on, admittedly then beginning to question my understanding of my own illness, also starting to feel a bit silly. After a short time and some researching (him) it turns out that yes, I am eligible.

Battle two, won.

Even though I’d got the outcomes I’d hoped for I felt deflated, exhausted,upset and belittled by this whole conversation.

Are other people experiencing the same? Hospital blood tests being refused by GP’s?

Is it usual for GP’s to completely deny your diagnosis? To make you feel you’re being dramatic?

If so, how on earth do you cope with it?!

[Mostew]

Well done you.

Hopefully after feeling deflated you will feel justifiably pleased with yourself and triumphant .

It’s so tiring being assertive but necessary.

Im lucky . My local surgery co operate with what I ask for. . No problems yet with blood tests. X

[Otterfield]

How frustrating. I expect your GP worked in haematology before 2008 when MPNs were reclassified as cancers. I have all my blood tests at the hospital. There certainly is a shortage of tubes but the phlebotomist told me that blood cancer patients would be given priority and shouldn't be affected by it.

[hunter5582]

What you experienced is all too common. Most doctors, including many hematologists, know very little about ET and the other MPNs. You should expect that you will need to educate providers about this form of blood cancer. Yes - it has been considered a cancer since 2008 when the MPDs (Disorders) were reclassified as MPNs (Neoplasms) by the WHO.

You are 100% correct that the monitoring CBC and CMP on an ongoing basis is an essential part of your treatment. It is not optional. It is most disturbing that this would be questioned, but ignorance is all too common with MPN treatment needs. Treatment with Pegasys can be very effective (it is for me) but it does have risks that need to be monitored. No one that knows anything about this would question that fact.

Assertive patients receive higher quality care. Passive patients do not. This is true in all healthcare systems and with all conditions. It is especially true with MPNs. We always have to be able and willing to educate providers about our conditions. We have to advocate for what we need and ensure that systems of care deliver the needed services.

I would suggest a bit a a reframe for your experience. You educated your GP and cured his ignorance. You persevered and overcame resistance from the healthcare system, curing both ignorance from administrative staff and refusing to accept an inappropriate denial of services. You were right. They were wrong. Feel validated. They said no. Your refused to accept it. You triumphed in accessing care. Feel empowered. Along with the positives, it would be normal to feel frustrated, exhausted, and upset. You are not being dramatic. You are having a normal response to a difficult encounter with the healthcare system. No one should ever feel belittled when dealing with their providers. This is unacceptable. Please know that you were 100% correct in your understanding of ET and what the treatment needs are.

Congratulations on how you handled this situation. Well Done!

[Rachelthepotter]

Hi. I ‘ve had similar problems with GPs - there is some sort of built in financial disincentive for GPs to do any tests in the latest NHS GP contract. And the difference in status between partners and non partners is also new. I’d only just found out ( from young relatives training as GPs) that they have to pay to become partners - at which point their salaries go up by a multiple of three. If your MPN hospital isn’t too far then getting tests done there the day / week before is a good idea.

[Anniepops112]

Well done you, it’s exhausting though and you shouldn’t have to fight your corner

I’ve luckily just had my 6 month review so not due blood tests until the new year.But I had to put my case forward to my GP have a covid jab as was told ET was a condition not a blood cancer 🙄 at my next appointment the haematology consultant told me I wouldn’t qualify, as having an MPN wasn’t on the shielding list and made no difference.

I didn’t and thinking about it, I may yet, but send some feedback through PALS if you can. Sometimes health professionals are out of date, without feedback they can’t improve

[lizzziep]

Well done fighting your corner! I was told by the specialist nurse when I went on hydroxy I wouldn't have to pay for prescriptions as it was chemotherapy. Unfortunately GP's do seem very ignorant about ET and often get it wrong.

[mhos61]

I haven’t come across this issue ‘yet’ but I do have my blood tests at the hospital, so don’t know if that will make a difference when the time comes.

I would however like to congratulate you on your perseverance and advocacy. I have had to advocate on behalf of my hubby and myself with regards to GP Practices, it is stressful. I worry for those receiving poor care who can’t find the strength to advocate for themselves.

Well done you!

[Hopetohelp]

Personally I haven’t had any problems with treatment or blood tests and checkups here in the uk. I am under the haematologist at the hospital and have very little to do with the Gp, although the hospital asked the GP to monitor sugar and cholesterol levels which they have not done. Blood test forms come from hospital too and they seem to have more authority too, even sending me for tests without appointments much to the dissatisfaction of the blood test receptionist. Have heard GP’s have a problem sending people for blood tests but hospital has been ok for me. Good luck and carry on sticking to your guns. Maybe ask to deal with hospital haematologist directly as it is definitely classed as a blood cancer

[MWxxxx]

I understand your frustration but good that you stuck to your guns. I haven't had problems with blood tests so far - I have one booked for next week and its been booked since before the shortage so hope it will be ok. I also had no problems getting my prescription exemption. However, i did have one GP recently say to me (somewhat sarcastically) "i'm really interested to know why you think you are more at risk from covid than the general population just because you have a disorder". It made me feel quite cross and a bit worthless but I know I'm right and fought my corner. Somewhere on the blood cancer uk website there is a letter which has been specifically written for people to give to their GPs or health care practitioners stating that MPNs are rare blood cancers and that because of this they are eligible for priority covid jabs. It may be worth having a copy to hand to quote from if you have problems in the future.

[DJK12 in reply to MWxxxx]

Your suggestion about the letter is a useful tip. One of our practice nurses insisted I had ET. I tried to explain it was now Post ET MF at level 2 (I progressed 10 years ago so nothing new) and also said I knew it was rare - she just replied that everyone thought their cancer was rare! Before the next blood test I printed out the relevant page from MPN Voice about MF and asked her to scan it onto my notes- things have looked up since then. It should though have been quite clear from the consultant's letters as to what was wrong with me. I also keep a copy with my washbag in case admitted to hospital as an emergency as have had trouble there with lack of knowledge of MPNs if not admitted via haematology.

A previous practice nurse spent more time complaining about doing the hospital's work than it took to do the blood test - thankfully she retired as it really seemed wrong that the patients, already probably stressed, should be stuck in a row between the hospital and practice about who does what. The present ones thankfully have made no comments about doing them.

[Mazcd Partner MPNVoice in reply to MWxxxx]

The letter you are referring to is also on our website, it was a joint letter with MPN Voice and Blood Cancer UK

mpnvoice.org.uk/wp-content/...

[Naynay81]

Thanks to all - really appreciate the support and suggestions. Interestingly enough it was actually one of the GP partners who suggested this site as a means of support, to avoid the dreaded web. Shows there is a real disparity in understanding not just between services, but between GP's in the same service around the condition.

Good (in a not so good way) to know I am not alone. Thank you all for your help! I certainly feel less deflated thanks to you all.

[Wyebird]

Well done you! 👏.

My practise are amazing apart from the very beginning when the GP refused to sign a claim form fir travel insurance. Due to my diagnosis I didn’t get to go on holiday as I started treatment approx 3 weeks prior to departure. The consultant said ‘don’t go unless you can have blood tests every week’ (i was going long hauI to Thailand). I bet you don’t feel like going anyway do you’ to which I replied ‘ no’ .The doctor kept on saying but your platelets are going down. Even though they were over 600 and I had already had a stroke which put me high risk.

Dismayed I phoned up the travel insurance. The diagnosis on the letter to the GP was enough in its self. They paid up no problem.

[Red64]

Hi,My consultant sends me my blood request forms with an appointment for the hospital phlebotomy department, who so far state they have plenty of vials as they are limiting them to gp practice. I was already entitled to free prescriptions dut to an underactive thyroid however my consultant also offered to arrange this.

One of the GP's at my practice has taken it upon himself to carry out research on the subject and has had long conversations with the consultant, the other GP's have a fairly basic knowledge so I will only see the one unless it is something unrelated.

I was diagnosed last year following routine blood tests for my thyroid levels and was initially on just aspirin but have been on hydroxy since June this year, with increasing dosage but it appears to be doing the trick with no major side effects.

My only advice would be to be prepared when you see your GP and know what you want and your facts and if in doubt ask your consultant or specialist nurse to contact your GP on your behalf.

[SueYoung]

Well done in standing up for yourself and getting what you need, you are not alone and as you say it is wearing. I used to see my haematologist annually with bloods done 6 monthly at the GP prior to this appointment. The GP surgery then started to refuse to do this as they said blood testing wasn't in their contract when you are under secondary care. Upshot is my haematologist says I will just see you 6 monthly as your now 60. I go and have my consultation with him with 6 month out of date blood results, the nurse takes bloods there and he sends me a letter with the results and any changes needed. Thankfully my platelets are around 600 and stable so he tells me I just need aspirin at the moment. Just a daft way of doing things but I can't face a battle to get my bloods done before the appointment.Sue

X

[Borage in reply to SueYoung]

That is not very good Sue, and the hospital can do better. In normal times I have my bloods taken half an hour before my haematology appointment and the results are ready in time. Cannock hospital has invested in a machine which gives results in minutes and I am given a copy.

Since Covid, my consultant does the forms on the computer so they are ready for me to have bloods taken a week before my telephone appointment, and they are printed out by the receptionist at outpatients, where I collect them and go straight to have my bloods done without having to queue.

Last time she had forgotten to do the forms so the previous ones were used again.

My prescription is ready to collect at the hospital outpatients’ pharmacy the day following my telephone appointment. The pharmacist won’t dispense it without the latest blood results on line.

[EleanorPV]

Well done with your fight. Unfortunately this is all too normal. For your information, Pegasys also requires regular blood checks.