Finally decided to go private.: I’ve taken the... - MPN Voice

MPN Voice

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Finally decided to go private.

Peetzil profile image
20 Replies

I’ve taken the plunge after 4 years of little progress with my GP referral to Haematology stuck in the system backlog (current wait time 60 weeks!) I’ve booked a consult with Mark Drummond at Spire for November. Fingers crossed that I can get to the bottom of what’s causing the raised Hb, Haematocrit & Ferritin🤞🏻

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Peetzil profile image
Peetzil
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20 Replies
hunter5582 profile image
hunter5582

I think that is a very wise decision. Sorry to hear the system is so dysfunctional that you could not get a referral in such a long time. Please let us know what you learn.

Peetzil profile image
Peetzil in reply to hunter5582

Thank you Hunter, I will do🙂

Wyebird profile image
Wyebird

Don’t blame you but don’t come off the waiting list. Contact your GP surgery today and say you will go anywhere in the country , stay on the phone whilst they search. . That’s what I did. Keep me informed

Peetzil profile image
Peetzil in reply to Wyebird

Wyebird thanks for your reply, but it will be quicker & cheaper to go private in Scotland as the hospital is not far from where I live. I’ve just accepted the downside of that is I will have to pay for the privilege! 🙂

Wyebird profile image
Wyebird in reply to Peetzil

Good luck xxxc

MPort profile image
MPort

Hi I did that 15 years ago and it was best decision I ever made. My local general haematologist was willing to liase and act upon the information I gained from the private consultation. So work out the politics of private v NHS help. Will you be able to get the recommendations acted upon, if there are some. As an example a relative is having a foot operation privately due too long a wait. But GP wont help with aftercare and this is now a major problem. I hope you get good results and look forward to hearing how you go.

Peetzil profile image
Peetzil in reply to MPort

Thankyou MPort I’m just not prepared to wait another year, fortunately I am in a position where I can opt for private I know many aren’t so lucky. 🙂

Scaredy_cat profile image
Scaredy_cat in reply to Peetzil

I was treated extremely quickly 25 years ago when I was diagnosed with ET and then again when I had symptoms this year that I was concerned about and proved to be progression to MF, all with the NHS in England. I don't know if you've been confirmed as having an mpn. As mpns are treated as cancer now, could you mention to gp if you are eligible for consultation under the 2 week rule? Once you're in the NHS system, the treatment is very good. Also, given that mpn haematologist are quite rare beasts make sure your private consultant is suitable

Peetzil profile image
Peetzil in reply to Scaredy_cat

Hi scaredy-cat thanks. I have not been diagnosed with an MPN I think that’s the problem. So it’s a non urgent referral and atypical presentation. The consultant I have booked specialises in MPN, so that’s definitely a plus! I will keep you all posted my appointment is not until November 🙂

Hopetohelp profile image
Hopetohelp

I went privately at first to get diagnosed and then asked to be referred to nhs which has been very good for me. Good luck

Peetzil profile image
Peetzil in reply to Hopetohelp

That’s good to hear! Thanks 😊

pj1963 profile image
pj1963

Can I ask if you were able to book directly with Mark Drummond or did you have to go through your GP? I am wanting to see him myself. I have MF and am under the care of the haematology dept at Forth Valley. I asked for my last appt to be an in-person one, but was so disappointed to be seen by a nurse. I just feel I am not being properly cared for!

Peetzil profile image
Peetzil in reply to pj1963

Hi pj1963 I was able to book directly on Spire website, it’s £200 for initial consultation. Worth it I’d say, good luck 🤞🏻

pj1963 profile image
pj1963 in reply to Peetzil

Ok, many thanks.

Aldebaran25 profile image
Aldebaran25

I was so lucky with my PV diagnosis and treatment. It really is luck of the draw and a lot depends on where you live. Obviously timing also counts with covid causing the big back log. After a generic blood test, in 2019, I was sent by my GP to St.Thomas’ A&E and taken care of immediately by the excellent team at Guy’s. So unfair that this is not the case for everyone ! You are wise to speed things up by getting started privately. This is what I did for another more recent health issue and the private consultant supported me in eventually getting NHS care.

Peetzil profile image
Peetzil in reply to Aldebaran25

Thanks for your reply glad to hear it went well for you with speed of diagnosis & care.

Megabyte profile image
Megabyte

Hi Peetzil - I’m considering booking a consultation with Dr Drummond for a second opinion - I know he’s considered to be the MPN expert in Scotland - but I don’t want to have to pay for a lot of tests when they’ve already been carried out by the NHS (btw I waited only 5 weeks for my first referral to haematology here in Ayrshire and Arran). Are you able to get your records or will you be starting from scratch?

Thanks

Meg

Peetzil profile image
Peetzil in reply to Megabyte

Hi Meg, I have copies of all my blood results for the last 4 years & I will have a FBC at beg of November before my appointment. I plan to take them all along, but think he may have other tests he wants to do? It’s easy & free to request copies from your GP practice, anytime I have a test now I just ask for a copy. Good luck!

Megabyte profile image
Megabyte in reply to Peetzil

Ask the GP for my blood results! Never thought of that - duh - thought I was going to have to wrestle them from the hospital. I am going to ask for a face to face with my GP after I get the results from my ultrasound - so I can ask for everything then. Thank you for responding - I’ve heard such good things about dr Hammond - here’s hoping it’ll be a good result for both of us. Meg

Peetzil profile image
Peetzil in reply to Megabyte

Yes I’ve heard good things too. I ask for copies of everything now, I have MS & when I go for an MRI I ask right there for a copy, usually someone from Radiology will phone me afterwards & then send me a copy (it’s our information after all) I am thinking if you want a copy of your ultrasound report you can do the same, or ask your GP for that too! 🙂

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