I was diagnosed with ET Jak 2 back in 2019 where I was given a form by the haematology nurses to fill out for the medical exemption, I never requested this, it was brought up the day of diagnosis. At this time i was only told to take aspirin and watch and wait.
My renewal is coming up next month and I have received a letter from the NHS asking i obtain a form from my GP and get it signed and sent back. My GP called today querying this, she said most people dont class this as cancer and my injections are already free at Christies so i should be paying for all other medication and doesnt want to sign the form. If this is the case this is fine, but i did feel she had an attitude and belittled me slightly.
I just wanted a second opinion on this.
Thanks
Lyndsay
Written by
Lynzyc
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The GP's opinion is out of date. MPNs have classified as cancers since 2008. This is widely recognized throughout the medical community. She is in need of updated education on MPNs and it sounds like an attitude adjustment as well.
Exactly, I was a little upset during the call so didn't know how best to respond. Do you know where I stand in terms of the medical exemption? I'm happy to pay if necessary.
I am not familiar with this process as I live outside of the UK. Others are more knowledgeable than I am. I should think that if you qualified before, you qualify now. Perhaps the folks at MPN can give you guidance.
Your GP is absolutely wrong. Who are ‘most people’ I wonder. God forbid it’s the healthcare sector.
Provide evidence your GP can’t argue with. Below are two links from McMillan, one stating MPNs are a blood cancer and the second link stating all cancers are entitled to free prescriptions.
“In England, prescriptions are free for anything related to cancer or its effects. You need to collect an FP92A form from your GP surgery and apply for a medical exemption certificate. An exemption certificate lasts for 5 years and can be renewed if you are still eligible.”
Absolutely you’re entitled to that certificate! I suggest you ask your Haem team to sign it off for you. And you may want to drop some MPN Voice leaflets off at your GP surgery! It’s really important your GP gets the message. She might be the gateway to other important related benefits like Covid boosters, flu jabs etc.
Morning I did get exactly the same attitude from my gp who actually said 'i will sign it however if you get caught lying you will be fined' i then had an appointment at guys with Prof. Harrison who advised we are entitled to free prescriptions and any issues with the gp she would sign the form. Hope this helps
This makes me so mad. How some GPs are so bad at being people. It doesn’t matter if they don’t want to sign the form. I don’t want to do that spreadsheet I’ve been putting off at work. But it’s my job.
Gird your loins and send them the evidence this is a cancer and you wish her to sign the form. I would even go so far as mentioning in the email / letter that “most people” may not consider this a cancer but the “medical community” does. But then I’m petty AF!
Thank you for responding. I sent an email to the surgery last night and had a rant, plus attaching evidence that the lovely people on this website have sent to me. Let's see what happens now. I'll collect the form today and ensure it's signed. X
Excellent. Good luck! I just get all riled up (lol). I have a great GP. But once was told in a very condescending way (by another GP at the same practice) when I queried something that an ultrasound cost more than an MRI (I mean… outright lies). To avoid sending me for an MRI. Basically it meant she missed the fact (despite me pleading) I had broken my ankle like a “crunchy bar” external bone fine internal bone multiple breaks. I just get annoyed that they are jaded and assume we’re idiots / don’t know ourselves and something is up.
I am EtJak2 also and like you in the UK, albeit in Scotland where the practices might be different.
I am not clear on what your Gp is being asked to sign but I don’t see why you should be paying for any treatment.
As others have said ET has been accepted as a cancer for many years.
With all due respect if your GP has made you feel belittled it is perhaps to time to seek a second opinion (from another medical professional ) or even change your GP.
Is your ET being treated solely by your Gp or are you also being treated by a Haematology team at your local hospital ?
If not I would definitely ask for a referral.
My Et is treated at my local hospital and , while my GP practice is excellent , the care I get from the hospital is specialised to a degree I don’t think most GP practices can be expected to match ( and should recognise that they can’t - it sounds to me like yours doesn’t have that recognition)
Hi, I'm being treated by a specialist at Christies Hospital, the form itself is signed off by the GP though hence this phone call yesterday. I have emailed the specialist directly to get confirmation and I'll ensure the GP practice sees a copy of it. Shame we have to do this really. Thank you for responding.
Hi, it’s not her job to look into your pocketbook and decide what’s appropriate, especially when you’ve had the same coverage previously. Highly suggest you contact her department head and gently present your situation, but without rancor. Try to keep it light but ask for a reversal of her decision by a date certain in August. Document it immediately and have it notarized same day, if possible. Make hard copies in case your laptop decides to pass on
Docs are under great stresses and sometimes express their frustrations via arbitrary and capricious decisions. Your doc may be upset you escalated the situation but the truth is she made you feel a victim rather than showing compassion for a routine matter.
Ensue your notes have a personal section, separate from documenting your chat with the department head, that speak directly to how she was dismissive and made you feel shamed and devalued - and that she clearly abrogated your trust.
I have to state this isn’t legal advice but do, if you feel comfortable, let us know the outcome or any support you might need .
LAST, don’t advise your doc you’re going over her head as that will only allow her to go to her department chief before you do. Good luck and as we Yanks say, “If you don’t ask then you don’t get.”
I agree with the comments on here. Fortunately my GP is good, but we do have to be advocates for our needs and lived experience. A family member knew someone who had et without any symptoms and who didn't take chemo, so she kept asking me why I had such assorted pains and fatigue. I just gave her the Macmillan book about ET and chemo that listed symptoms and side effects. Ignorance only stops being ignorance when facts are presented. Good luck on your journey.
I would recommend changing your GP. Poor attitudes is a huge issue and a patient safety concern, and a generalised safeguarding concern. MPNs were recategorised as a form of blood cancer in 2016.
Hi all, just wanted to say a huge thank you for everyone taking the time to respond. My Medical Exemption Certificate was signed off today by another doctor so all sorted.x
I was told MPNs are blood cancer, therefore, you should be able to receive free prescriptions. When I spoke to my GP about it, he initially asked why I was asking. I explained my haematologist said PV was a blood cancer and I was exempt. I was shocked when he replied, ' Oh he's told you that, has he, then yes. To be honest, I was almost 60 at the time so I just waited and now I don't need to pay. I think it's very wrong how you were made to feel, I definitely empathise.
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