How long should it take to be referred to an mpn specialist

[Dottiedot]

Hi All

I requested for my haematologist to refer me to Prof Harrison at guys in the middle of March. After reading some very helpful posts on here I emailed Professer Harrisons secretary today who I must say is brilliant and helpful. It seems my haematologist hasn't referred me yet I just spoke to her secretary who confirmed it hasn't been done yet. I also asked for copy of my bloods I had done this week as I have never been informed on any of my telephone appointments how they are and from reading Hunters posts know that this knowledge is valuable. Would appreciate your feedback 😊

[Mostew]

I asked my Gp to refer me. He did it same day . And even rang to let me know . Good surgery ..Re. Blood tests . Ring haematology nurses at hospital. They are helpful. Then ask for print out when you speak to Dr. At usual hospital appointments. .

Don't wait for any info. You want . Always write notes to remind yourself what you want to say .

Luckily I don't struggle being assertive!!!

Good luck..

[Dottiedot in reply to Mostew]

Hi Mostew thanks for getting back to me. My haematologist called me back today and has sent the referral over so fingers crossed 🤞 x

[Mostew in reply to Dottiedot]

Oh good xx

[Hopetohelp]

Regards blood test results I phone my haematologist’s secretary who emails them to me. Shame the nhs can’t link our hospitals and Gp computer systems together else we would be able to get them on Patient Access. Crazy in todays world of computer technology

[Michali45 in reply to Hopetohelp]

I agree! My NHS app shows detailed blood test results done at the request of the surgery but hospital results are very sparse and depend on the letter sent by hemo team at the hospital. I take a photo of the computer screen when I am at the hospital so I can study my results at home. I think I will contact the team to get results emailed to me though!

[Hopetohelp in reply to Michali45]

Totally agree with every point you make and also we are entitled to our results

[Exeter21 in reply to Hopetohelp]

They have just recently created an app for all hospital results & messages from consultant if you lived in Devon UK. . It’s an excellent addition to read results next day. Hopefully it will be elsewhere EVENTUALLY …..

[Hopetohelp in reply to Exeter21]

Amazing. Hope it comes round the whole country. Wonder how we know if it is available in our area? Do you know what the app is called?

[Wyebird]

Hi, how awful, when I asked to be referred it was done immediately. Do you think your heamo has forgotten? Try going to your GP.s Ask them to refer you. Maybe request referral in writing to both.

[redumbrella]

I asked my Haemotologist on my last visit about 6 weeks ago if she could refer me to the MPN Specialist here in Ireland She readily agreed and I have an appointment the first week in June.

Your bloods really should not be a problem, I have copies of my bloods going back several years, my Haemo usually prints these out for me at the end of each visit.

Tge best of luck with your referral.

Garry

[Mal42]

I hadnt realised how lucky I am to have a very helpful gp, I get my blood results straight away from them. The problem I have had is getting local haematology nurses to get blood results to prof Harrison. The good news, ruxolitinib has been good and now a year till next appt with prof, though I can contact if needed. Once a month with local haem, mostly nurse now, though v excited to have a live appt with doc soon. I do have another blood cancer as well.

Good luck with getting your results

Mal

[ciye]

I need a bmb and spleen scan before my haemo will refer me, it seems professor Harrison requires these, scan on 17 may, not heard about bmb yet.

[Dottiedot in reply to ciye]

I had bmb and scan in December 2020 x hope they get it booked in quickly for you x

[Smudger0122]

Hi Dottiedot,

I was referred to Professor Claire Harrison without being made aware.

Was really concerned, but apparently my local haematologist team just want a second opinion of my care.

Then I will be share cared, with Claire Harrison and her team overseeing my local haematologist for the long term care plan.

My appointment is end of May at Guys.

I have had a bone marrow biopsy as well in March, with confirmation of ET Calr+ and spleen scan. All organised by my local haematologist before being referred.

Hunter did mention months ago, about requesting an MPN Specialist.

I have been assured Claire and her team are the best, which I have many questions for.

Hope this helps

[Dottiedot in reply to Smudger0122]

Hi Smudger that's really good your haematology team referring you to make sure you get the best care x I'm pv jak2 positive also had a scan and bmb, my haematologist called me Friday questioning why I wanted to be referred and asking if I wasn't happy with the care received from her, I have a few other health issues too which all seem to be immune system related which have happened since my pv diagnosis so I'm hoping Professor Harrison may be able to advise and help x

[Smudger0122 in reply to Dottiedot]

Hi dottie,Hope all goes well for you, keep in touch.

All the best

Smudger