Feeling disheartened and upset

[Julia73CJ]

Feeling disheartened and upset after recent appointment- just had a review with specialist haematologist and have come away really tearful. Have been told that they will discuss my case at MDT and send a letter to my GP and will update me in 6 months. But I am constantly being told they will discuss my case at MDT and up to now they never have. Todays Dr told me that he thinks I have a MPN but would not commit to it- up to know I had been told I do have a MPN and my initial haematologist told me it was ET after he done my BMB. The specialist said they would do their own checks on BMB and let me know. So far I know I am triple negative. Was referred to cancer fatigue clinic by the specialist previously so thought I must have a MPN otherwise surely they wouldn’t have referred me?? Now I am wondering whether I have a MPN at all- this dr told me my fatigue was done to other medicines I take and that my nose bleeds could be a cause of my raised platelets ( 12 year history of raised platelets) - I just don’t know what to do now! Really, really tearful as it’s all such a rollercoaster

[hunter5582]

I am sorry to hear that you seem to be getting the runaround. That is most disconcerting. Unfortunately, most hematologists lack the expertise to provide optimal MPN care. Could not tell from your post, but if the most recent hematologist is not a MPN Specialist then it is definitely time to consult with one. Others in the NHS have discussed how to arrange to do this within the system. Others have paid to consult with MPN Specialists privately. It is worth doing whatever it takes to obtain the care your need and deserve. Here is a list. mpnforum.com/list-hem./

Being told you would need to wait 6 months to get an update is unacceptable. Sending a letter to your GP but not to you is also unacceptable (though I would assume your GP will give you the letter as soon as it is received). Assertive patients receive higher quality care. Passive patients do not. You have to be your own advocate and ensure you receive optimal quality of care.

You deserve a timely answer to your MPN status since it is in question. You have had all the requisite testing done. Suggest it is time to push for a more prompt answer to your questions.

Meanwhile know that there is always understanding and support here on the forum. All the best to you.

[Tico]

So sorry to hear about your experience on seemingly getting no answers. Looking back from your first post, your mentioned you were being referred to Claire Harrison? Is that still going to happen? The only thing you can do is keep pushing for answers. I hope you get them sooner rather than later. Tina.x🤗

[katiewalsh]

Hi Julia. I’m so sorry you’re having this experience. It seems totally unacceptable. Tico mentioned you might be able to see Claire Harrison. I suggest you tell all of these doctors you want them to immediately send a referral to her so you can meet with her. Hunter is absolutely correct about the need to be assertive. It’s a disgrace that we, as patients, have to be assertive to get the kind of medical we’re entitled to. Is it possible that the specialist couldn’t commit to a firm diagnosis because s/he needs time to review your biopsy results & talk to the other doctors? What I don’t understand is the 6 month wait. Could there be a misunderstanding about that? Is it possible to talk to the specialist’s nurse and tell her what you thought was said and you’re sure they can’t really mean that? Ask her to check the doctors notes? Plz know you have our sympathy. Katie

[Rachelthepotter]

Hi Julia. NHS hospitals have to have a PALS ( Patient advice and liaison service) set up and PALS comments feed in to senior management. So , sending an email to the PALS for your hospital , copied to your consultants secretary asking why you are being given the runaround should help. All the best

Rachel

[Bridie123 in reply to Rachelthepotter]

Do they 😮 I never knew that!

[Wyebird in reply to Rachelthepotter]

Brilliant advice

[Mustang50]

So sorry to hear this but can sympathise with you as was five years with GP’s messing around before I was diagnosed, you do need Hunters great advice to see a MPN specialist and not just a normal haematologist, and hopefully they can get you sorted, try not to worry to much as this will make symptoms worse the not knowing is worse than living and getting on with it, head down and get it sorted good luck!

[Oscarsboy]

Am so very sorry to read of your circumstances here. I too had to really push to get my treatment sorted and you have been offered great advice here. Sadly you do have to be assertive at times and it is unreasonable for you to be left in limbo like this for 6 months if your BMB has shown ET (which mine did). Hunter is absolutely right it is time to push for answers to your questions. You deserve to get the requisite treatment. I hope all goes well for you from hereon and Go For It!

[Wyebird]

Oh how awful, not detecting a mutated gene I believe makes diagnosis more difficult unless you are seeing an MPN specialist. To have raised platelets of so long makes me doubt your GP. I do hope you get answers soon. Are you in the Uk?If so ask Maz for a list of MPN specialists- good luck xxx

[Wyebird]

Hunter as always has given excellent advise x

[Loubprv Volunteer]

Hi Julia

Please find yourself an mpn specialist. You don’t say where you live.

I truly believe that only specialists really have an idea about mpns and how they affect us.

We can attend any hospital and register with any specialist we wish.

I moved from my local haematology department in Cumbria to The Christie in Manchester because I was fed up with being told my blood count ( haematocrit of 49) was fine and I could go home, despite a banging head, fatigue and other symptoms. I needed a venesection but they argued with me. How dare they? They weren’t living in my body.

Please, seek a second opinion from an mpn specialist and then ask if you can become his/ her patient. You HAVE to be your own project manager and not let these people walk all over you. I’ve never looked back - I’ve had PV for 13 years and am 67. If in doubt contact mpnvoice.org.uk for brilliant support.

You’ll be fine I promise but do take matters into your own hands and bang the table a bit. You’ll feel much better for it. Chin up! All will be well.

Love

Louise x

[Janis12 in reply to Loubprv]

Hi louise, I was reading your response to Loubprv and noticed you lived in Cumbria, I live in Northumberland have ET and I am under the care of an MPN specialist who is based in Cumbria but does clinics in Newcastle. With the specialist in your area I was wondering why you have opted to seek out a specialist elsewhere. I hope you do not mind me asking. Best wishes. Janis.

[Loubprv Volunteer in reply to Janis12]

Hi Janis don’t mind d you asking at all! Originally in 2009 I saw a decent haematologist who levelled out my blood count but who wasn’t into discussing anything. He simply talked at me and told me what to do which I don’t like. Once that happened I was palmed off onto different locums who quite frankly didn’t know as much about PV as I do.

Nine years ago there wasn’t an Mpn specialist in Cumbria, so I simply had a look at the Christie ( being a centre of excellence for all cancers) and came across Prof Tim Somervaille who specialises in MPNS. I emailed him, received a delightful reply saying he would be delighted to see me at the Christie and asked me to ask my gp for a referral. That was 9 years ago and I’ve never looked back. When I attended my local hospital here in Cumbria I had to have a blood test two days before my appt ( which was a pain in itself because I could never get an appt when I needed one) and my then haematologist wasn’t keen on vensections as well as hydroxicarbamide. He simply wanted to increase the hydroxi dose. No thanks.

Tim is brilliant. He listens. He will give me a venesection for half a bag if my haematocrit is heading towards 44, and the whole team are superb. I arrive at 11, have a blood test straight away, an hour later I have my appt ( not always with Tim sometimes one of his team which I don’t mind) and if I need a venesection I’m booked in. I sometimes have to wait an hour but again I don’t mind.

I ll stick with the Christie now. They know me and I know them!

Hope that explains things Louise

[Janis12 in reply to Loubprv]

Thanks for that information, I am fairly new to all of this so I am collecting as much information as I can from this site so that I am better informed. I also have the issue of the blood test two days before my Consultants appointment (telephone only at present) so that ends up two days written off. Sounds as if you have everything fine tuned which I expect only comes with experience. Best wishes to you in lovely Cumbria.

[Andrew8]

It's quite normal to feel anxious and panicky, but by the same token the NHS specialists, doctors, and staff are under enormous pressure at the moment, so they appreciate some gratitude and thanks. As a beekeeper I have some natural wildflower honey, so I take a jar of it to my specialists , nurses, doctors and receptionists. They all remember me know, and seem grateful for the appreciation, and I seem to get more attentive treatment, and detailed letters following face to face appointments, which I seem to have no trouble getting if I ask for them.

[Janis12 in reply to Andrew8]

Hi, I was a clinician in the NHS for 36 years and I can tell you that patients like yourself who showed appreciation with 'little gifts' or even just kind words were always remembered and we always put ourselves out for them. Most of us here will be long term patients and one would hope that we all develop a close and trusting relationship with the professionals looking after us. I do not have any bees but I am a great baker of cakes so perhaps when the Covid saga is over and we get back to 'face to face' appointments I might just take a few treats in. Best wishes.

[nightshadow]

So sorry to hear that you've been getting such a run around. I would definitely use the PALS system if I were in the same situation. Hopefully you get better care soon.

[ritaandscooter1]

Agree with everyone about being assertive!! I can't tell you how many times I've had to stand up for myself despite the fact my husband attends all these meetings. Advocate for yourself and demand quality health care. I was in tears like you, after my Onocologist/Hematologist started treating me horrible after she found out I went to a MPN specialist! Her ego got bruised! There is ABSOLUTELY no reason for a Doctor to act this unprofessional. I fired her and now am with a super caring hematologist/onocologist who doesn't know everything about rare blood disorders but he seeks out expert advice and most importantly listens to me. Time for you to move on. Kerry

[Notdiagnosed]

Blimey. Reading this it's madness that each hospital hasn't got a haematologist who knows about mpns and can treat them. I am beginning to think that maybe mpns are not that rare. Irs just maybe the expertise to diagnose and treat them that is.

They prefer to say "oh you had a dvt or stroke because of your own lifestyle choices " rather than you had a mutation.