Hi Guys,
After my haem appointment being cancelled at short notice plus they don’t know when the next one will be, I’ve decided to ask my gp for a private referral. I live in Scotland and the only haem doing private work, according to my searches, is Dr Mark Drummond.
Does anyone know of other haems? I know my trip to see one privately is going to be an eight hour round journey so just wanted to explore all options.
Kind regards Aime x😸
Hi Aime,
I am no help at all,but I wanted to say that I hope you find a good Heamo and soon.Shocked at your situation,very best to you,Sally
Thank you both very much. I have now received an appointment for end of October but I’m still going to pursue a private referral as others on the forum have had issues at this particular hospital. Been to my gp who will do a referral plus I’m getting an ultrasound to ensure spleen is ok so feeling happier.
Thank you again, your replies have cheered me up. Aime xx😺😺
Hi aime,is your haemo an mpn specialist? If not,ask him or your gp for a referral to one.if you are willing to travel anway it would save you going private & costing you god knows what. I've not long come off the phone to my nurse specialist because i could not hang around for my results last wednesday due to concerns over my granddaughters birth. The long & short of it is i have to see the haemotologist this wednesday over concerns about erratic platelets & i have every intention of asking for a referral to an mpn specialist now as this as been a concern for a while. I along with other you've replied to you am shocked but not surprised as my haemotology deparment is similar to yours by the sound of it! You take care & keep us updated. 🤗tina x.
Hi Tina, thank you so much for your support. The majority of those who work for the nhs are so good, I feel guilty at asking to be referred privately. I used to be self employed and took out health insurance many years ago so can access private healthcare to a certain extent which I know I’m lucky being able to do so.
I’m just sick to the teeth of being let down, fobbed off, having to wait lengthy and anxious times for appointments and results.
My haem wasn’t an MPN specialist and like you, I want to be seen by one. I hope you get on well with your referral and get to the bottom of why your platelets are so erratic. You deserve it after being through so much with your granddaughter’s birth.
I’ve made up my mind I want a second opinion as I have lost faith in my haem - usually see a different one each time plus at the last appointment, he made a point of apologising for not having my notes in front of him but my latest blood tests were fine!
Sorry for the rant. All the very best with your referral and I will keep you up to date with my progress. Kindest regards Aime xx😺😺
Hello Anne,
Sorry to hear that you have been anxious re appointments etc.
I used to see a different haemo when I went for my appointments but I was told that I could request to see a particular Haemo if I wanted to. This is what I now do when I go to the clinic and say to the receptionist that I want to see ...name of Haemo.
My blood results are on screen at each appointment and we discuss these. I also see my GP for a print out... your results are sent to to your own GP every time youve been to see your Haemo.
I used to go for my appointment an hour earlier to have my blood test done.. or apparently you can do this at your GP's a week prior to appointment but I just go to the hospital a week before appointment since I have to travel a similar distance to my GP.
I hope the above has been helpful and I wish you well which ever avenue you choose.
Kind regards
Jings ...Fellow Scot
Thank you Jings. I’m going ahead with my second opinion now. Got my bus and b&b booked as due to distance and lack of energy, I’m going to stay over, otherwise it’s over 9 hours of a round trip. I have asked before to see a particular haem but told not possible. Maybe that has changed now.
Yeah my gp is pretty good and I get my bloods checked a couple of days before I see the haem, so the results are ready for them.
Thank you again, kindest regards Aime x😺
Hi Aime
I can't help either but just wanted to say I too am shocked that you are left with this option.
Sending you a huge e hug xx
hi Aime i take you do not have a Mpn Clinical Nurse Specialist at your hospital the reply i got from new health minister the will not know how many off these they have till December i now have Tory shadow health minister to fight this could you not ask to see a Haematologist at another hospital rather than going private good luck
ScottishTerrier
ps changed name from StevenGeorge xxx
Hi, no there is no Mpn specialist of any kind where I go and as I've just said to Eleanor there appears to be one haem doing private work in Scotland. I just don't want to wait weeks. I'm getting left side pain under ribs but gp is sending me for an ultrasound but I think I'm getting anxious because my appointment was cancelled and 're scheduled for end of oct with my current haem. It was supposed to be this wed and I had bought my train tickets but got a phone call on Fri that itwascancellec. Thank you kindest regardsAime
HI Aime
i have e-mailed both Msps to bring this up in Holyrood i did not mention any names just a friend with same illness and what had happened and this proves the need for MPN Clinical Nurse Specialist in all hospitals with Haematology Dept why can't a registrar see you instead of a Consultant or are there shortages of them too
best wishes
Scottish Terrier
Hi Scottishterrier, if I can do anything to support your cause for specialist MPN nurses let me know. You can use my name, I don’t mind. If you need my personal details I can email you directly.
The last time I attended haem it was a registrar I saw, who didn’t have my notes and was quite blasé about it. I had made a three hour round trip to attend and for 2 minutes of chat, no check up, I was fuming but I thought well my bloods are stable so I’ll let it go.
However I’ve got “the bit between the teeth “ now so will not be letting go until I get satisfactory answers to my problems.
You take care, thank you again. Kindest regards Aime xx😸😸
Hi, I too would support any such campaign in Scotland. A couple of years ago NHS Fife were conducting a survey of what forthcoming services the public would like to see. I asked for just one MPN Specialist Nurse for Fife. I got a phone call from the health professional organising the survey asking if I could explain what MPN was. I am not holding my breath. Donald
Hi Donald what would be helpful if you take off computer what MPN you have and go along to your local MSP and put your case to him about getting a MPN clinical nurse specialist at your hospital telling him you have heard from other members whose hospital that have them and they are a god send and could your MSP get in touch with Alex Cole-Hamilton and Miles Briggs as they are trying on my behalf to get more MPN Clinical Nurse Specialists Thank you for your support and interest
best wishes ScottishTerrier ps get your Msp to raise the question the more pressure that gets put on Health Minister she may cave in but just now she is going down the Shona Robison path
Hi Aime, Back in December 16 I travelled to Edinburgh (5 hour round trip) and had a private appointment with Dr Mark Drummond. At that time Mark only worked privately on a Monday evening. It was the best money I've every spent. I work in the NHS so going privately didn't sit well. For health reasons, I needed someone to back me up. Hope this helps. Eleanor
Thank you so much Eleanor. Mark appears to be the only Mpn specialist doing private work in Scotland. I'm definitely going to make an appointment to see him as soon as my gp does the referral. I'm so fed up of the other hospital - you know where I mean!! Kindest regards Aime xx
In England, you can be referred by your GP to any consultant you want on the NHS. It is your right. It differs in Scotland but you might try asking your GP for an NHS referral to Mr Drummond. See this from Citizens Advice:
“You have no right to see a consultant or a particular doctor, although this can be requested. Your GP cannot insist that you see a particular consultant or doctor. You do have the right to see a doctor competent to deal with your case.
If you have special reasons for seeing a particular consultant, for example, if your child is the consultant’s patient, you could ask for an appointment, explaining your reasons for wanting to see them. If you still have difficulty in seeing the consultant, you could write to the hospital administrator asking for their help.
You may wish to get a second opinion after seeing a consultant, either as an out-patient or an in-patient. You will need to request this from the consultant, who may arrange for you to see someone else. If the consultant does not agree, you could ask your GP to help.”
No point in paying if you can see him on the NHS.
Thank you Osidge for a very helpful reply. I’m lucky that my health insurance will pay for the first consultation and diagnostic tests. I only have the insurance because I used to be healthy and self employed so very fortunate.
My travelling to a specialist in MPNs will be the same whether I go private or nhs so that’s no different. I’m just fed up of waiting for appointments and results. Kindest regards Aime x😽😽
Hi Aime, I’m sorry I can’t help, I couldn’t be much further away from Scotland if I tried! I just wanted to let you know I’m thinking of you and if a private MPN specialist is the way forward to give you some answers and peace of mind then go for it.
Let us know how you get on.
Much love
Judy xx
Hi Judy, thank you so much. As usual this forum is the best kind of medicine out! I am just off the phone to my gp re a referral and he has agreed to do it and will consult with the gp I saw earlier as trying to get an appointment with my one is like gold dust. I was feeling so bad this morning, pain on left under ribs, sweating, nauseous, etc that I had thought of going to A&E but ended up at the gp instead.
He thinks it is just gastritis and not my spleen but I’ve had left sided pain on and off a few times. I’m going to get an ultrasound soon plus blood tests this Wednesday. My diagnosis is always confused by symptoms from my inflammatory osteoarthritis so it’s never straight forward but that’s me!!
Hope you are keeping well and all the family are well. Kindest regards Aime x😺😺
Hi Aime,
Best to get it checked as spleen is on that side.
I’m not too bad thanks, keeping busy with the grandchildren. Joseph, who was in Abbie’s tummy when we met you, started ‘big’ school last week! Where does the time go?!
Xx
Hi Aime,
What an awful time for you! It’s such a shame your NHS provider isn’t meeting your needs. It’s worrying for us all. Great that you can access Private treatment; does make you wonder about those who can’t.
I really hope you have a good Consultation with Dr Mark Drummond and he can bring you some relief from your symptoms.
Mary x
Thank you Mary. I have been thinking about getting a second opinion for a while so the haem appointment being cancelled will probably turn out to be a blessing in disguise!
Take care and thank you again. Kindest regards Aime xx😺😺
Hi Aime. Hmmm. I completed one of those blood cancer surveys recently and when asked a question about what single thing would improve the experience for patients replied ‘consistent care throughout the country from MPN specialists’. Your experience simply confirms this!
Eleanor mentioned Dr Drummond only seeing patients privately on a Monday night. What does he do the rest of the time? Does he not have an NHS practice you could be referred to?
Very much hope you get this resolved.
Dr Drummond works for the NHS in Glasgow. (Maz I assume this information is ok, as its publicly available). In theory, in Scotland, we can ask our haematology department for a second opinion. I started this process but decided it would take too long and a huge amount of energy to follow this long process. I’m backing my NHS. they have been underfunded and under staffed for too long. Our cancer is rare and complicated.
Hi Ebot, thank you for your reply- it is very much appreciated. I have a gut feeling I should be seeing a specialist, so I’m going to follow it through. I’m probably just looking for reassurance that everything is stable and the left sided pain is gastritis and not my spleen and my excess bone pain is down to osteoarthritis and inflammation. I am also finding it quite hard just now with my haemaglobin being quite low so a specialist opinion will set my mind at rest.
Hope you are keeping as well as you can be.
Kindest regards Aimexx😺😺
He seems to be the best up here although I have had no personal experience. My “specialist” previously was terrible (it’s not cancer), but I persisted. Have a new “specialist” now seeing him for second time tomorrow. We shall see.
I don't know if he does private work but Dr Nauman Butt in Liverpool was my choice. He actually speaks and explains things. He clearly knows the subject and has a great manner. No superior attitude although he is clearly so.
I have sent you a private message as we’ve been asked not to name doctors on this site
Hi Aime, I’m shocked at your situation. Apparently there is a national shortage of heamos. What would have happened if you don’t have enough meds to see you until your next appointment? I dread to imagine.
Think carefully about going private. You’ll have to pay for your prescriptions.
Maybe you could be referred over the boarder. Either way do make sure you see an MPN specialist.
Good luck
Hi Wyebird, thank you very much for your message - it is really appreciated. I’m lucky to have health insurance which was taken out years ago when I was both healthy and self employed so my referral will be paid through that. I know I will have to pay for prescriptions but I have a gut feeling that I should have this second opinion so I’m going to follow it through and see what happens.
Thanks again, kindest regards Aimexx 😺😺
Hi Aime, I am so sorry to hear you have been put in this position. I cannot help you with the name of a specialist but just wanted to say I think it is very poor practice to leave without any other option. My husband had numerous rheumatology appointments cancelled with just phone calls through to GP to prescribe steroids...no blood monitoring...suddenly he developed a nasty form of herpes simplex in his arm ended up in hospital and told his immune system had crashed from all the steroids... and now the nerves in his arm are permanently damaged... turns out there were not enough rheumatology consultants, so they kept cutting the size of the clinic.
I just wanted to share this with you because I think it is good you are being proactive for your wellbeing. And you are so terribly kind to all of us here. My husband and I are still in shock and regret so much not insisting on an appointment or just showing up in the clinic....I hope all goes well for you Aime and that you find a doctor who is consistent and available!! And I hope free to access after the initial consultation! All the very best and you will stay in my thoughts.
Susan
Hi Susan, so sorry to hear about your husband. I don’t know if this may help but I go to a hydrotherapy pool run by physios which has helped me post op with numerous nerve, joint and bone issues. My only negative with it is that the heat makes me itch more. The warm water relaxes muscles and enables you to exercise, taking the weight off your joints, etc.
I have now received another appointment to reschedule the last haem one but not until 7 weeks time so I’m still going to follow the private route for at least the consultation.
Thank you so much and everyone else for their kindness. Our forum is such a strong place because of it and provides so much support which we can’t always get from the medics.
Kindest regards
Aime xx😸😸😻😻
Some thank you for taking the time to reply and for your advice for my husband I will tell him. I think you are right to listen to your instinct to seek another consult elsewhere. I hope it is helps. And I am sorry you have to deal with such issues, I can't begin to imagine what it is like for you. I see the pain my husband is in and feel so powerless to help him. And yes this forum is a wonderful space because if wonderful compassionate people like you!
Many thanks Aime
Susan
You are so welcome and yes we are all here for one another but some of us are new to it and still finding our way, at least that us the case for me. And I have just so appreciated seeing your wise and warm responses to myself and to many others here. All the very best with the upcoming new consultation Aime. The cat emoji I love them! we have a cat (and a dog) called Joey, he is such a character!!! Susan xxx
Thanks Susan, I have a cat called Aime who is spoilt rotten! Kind regards Aime x😸😸
Hi Aime
I see your PV jak2 neg was 5 yrs or so ago ..
I'm not officially Dx yet so not sure about the jak2 results
how do they deal with us if we are Neg on the jak2 neg ?
do they still treat us the same as the pos jak patients ?
have you found that the doctors are more dismissive of the with a Pv jak neg ... I'm worried that I will be treated differently depending on the out come of that result ..how have gone on regarding this over years ?
Hi nightssky, I was told that although jak2 negative, I would positive to a different mutation and it didn’t matter because the treatment is the same for Polycythaemia as it aims to keep the hematocrit below .45 so blood is not too thick no matter whether you are positive or negative.
I’m going for a second opinion soon, so will update you if I’m told anything new from that. Don’t worry, you will get treated. Read up as much as you can about your Polycythaemia on MPN Voice website, so you are then more knowledgeable and can have some control over both your condition and treatment. Keep posting on here too - there is so much knowledge and experience on this forum too.
Kindest regards Aime xx😺😺
thanks yes please update me when you get your 2nd opinion will very interested to here how you get on with that & I to will keep you up to date with my eventual confirmed Dx ...
Hi Guys, my second opinion is on 8 October so will update you all after that. Keep as well as you can be with the colder weather coming in. Got my flu jab on Friday so ready for winter! Kindest regards and thank you to ALL of you. Aime xx😻😻
nucleated red blood cells 
Haematologist / outcome 
New system
ET or MF?
