Getting Specialist Help

[Yoganana1]

Hi everyone,

I am really hoping I can get a bit of advice on my situation.

I was diagnosed with ET Jak2 positive just over a year ago and being over 60 I was put straight into daily aspirin and Hydroxycarbamide . This has definitely helped my symptoms but very often have problems with joint pain, slight unbalance etc still, therefore I asked my Dr for a referral to Prof Harrison, she sent a reply to my Dr agreeing to see me but stated my case looks fairly straightforward at the mo 🤷‍♀️ (although that’s what my Dr said she had written) when I had my consultation with my normal hospital Consultant he said I probably would not get to see Prof Harrison herself and would just be sent to another Dr in her department who covers her clinic and then I will be put back down the list at my hospital and probably not seen by my normal consultant himself anymore ?

This made me worry so I cancelled my appointment with Prof Harrison but since I have had major joint pain, sciatica and other problems so feel I may have made a mistake now sadly

I Would really appreciate your thoughts in this on this if possible as I have read several of you recommend a MPN specialist and have seen Professor Harrison herself too 😊

Thanks for any help or advice x

[LittleLuna]

Hi.

It sounds a lot like consultant ego getting in the way. I think you should contact Dr Harrisons secretary to reschedule your appointment. Should be no reason they would not do this.

I would find it strange your normal consultant said you would be put back down waiting list. I would write to the head of haematology department to question this, which basically sounds like a threat.

As an MPN patient you would now be with haematology for the rest of your life with regular checks. That you have opportunity to see such a renowned MPN Specialist is good, so do not let this referral go. I am sure if you email your story to Dr Harrison secretary she will understand why you felt pressure to cancel initial appointment.

I hope all goes well and you feel support from your medical team after your next appointments. Remember you are in control and have the right to stand up to any consultant who you feel is not treating or taking you seriously. All hospitals have a Patient Relations Service which are there to support and answer any concerns you may have with your treatment, care or an individual. Do not hesitate in speak with them.

Good luck and let us know how you get on.

[Yoganana1 in reply to LittleLuna]

Thank you for your advice.

I will E mail Professor Harrison’s secretary to explain I think. My Doctor was useless also as he just said he would leave it up to me.

It would be good to feel I have some support from the medical team here as ‘leave it up to you’ when you are unsure is not always a very helpful answer .

I will need to be stronger and re think my situation definitely

I wish you well also ..

[Rem31]

Have you been to see your GP about your painful symptoms? I’m apt to blame all my ills on my mpn and/or its medication only to find they are unrelated and my GP is the best person to help sort them out or refer for other specialist testing and diagnosis.

Following a dispiriting time at my local haematology dept I’ve been under Professor Harrison’s care for a few years now but only ever had two actual appointments with her, the first in 2022. So yes, in my experience your local consultant may have a point. Saying that, the Guys team come across as tight knit and efficient and I’ve never felt any less expertly dealt with there by anyone in the team. I have regular blood tests and as my mpn is fairly stable most of my appointments are by phone.

Having a mpn diagnosis is bewildering and takes a lot of getting used to. I found that having confidence in those treating me has been a vital part in feeling confident as a patient and so enabling me to get on with it best I can. Maybe if my local haematology dept had been better run I’d have been happy to be in their care still.

[Yoganana1 in reply to Rem31]

Thank you .

No I haven’t seen the GP as I’ve been to chiropractic and tried acupuncture also but think GP will be my next step

It’s all so very confusing I know and then I feel guilty talking to my consultant about referring me to Guys as it sounds like I don’t trust him !

I would just like someone to listen and be able to talk to as it always seems so rushed when I get my phone consultation from our general hospital

I think you are correct with the confidence of being a patient in their care, it is very important.

I will re think how I will go forward with this now

[Mostew]

I am a pretty ‘ straightforward case

’. Spoke to professor Harrison on phone last may . She was great. Spent so much time with me and I felt I was understood . Good advice and ongoing support by email if needed

Her secretary is warm friendly and efficient.

I am going down to London for in person appointment this May. I n sure the whole team at Guys is excellant

If I was you I’d rebook….

Good luck …

[Yoganana1 in reply to Mostew]

Thank you, think I will try again.

Hopefully they will let me ask for another referral but might need to explain why I cancelled in the first place 🤷‍♀️

I will get in touch with her secretary I think to explain first

[hunter5582]

I would definitely reschedule to see Dr. Harrison. I would think that if the appointment is with Dr. Harrison, that is who you would most likely see. The scehduler at Guys would be the one to tell you for sure. Even if one of the people she likely trained were to see you, you would still be seeing a MPN Specialist rather than a regular hematologist.

All the best moving forward.

[Yoganana1 in reply to hunter5582]

Thank you.

I just felt very silly as they all made me feel like I was making a bit of a fuss asking to see a MPN specialist

[hunter5582 in reply to Yoganana1]

Consulting with a MPN Specialist is not at all silly. It is essential to ensuring optimal MPN care, even for a "straightforward case." Anyone making you feel that you are making a fuss by acting to ensure optimal care is misguided. It is a fundamental truth that assertive patients receive higher quality care. Passive patients do not. No one should ever be made to feel silly or fussy for advocating for themselves.

All the best moving forward.

[Yoganana1 in reply to hunter5582]

Thank you Hunter, we can always rely on your expert advice. I agree that assertive patients get better care but unfortunately the consultants and GP's sometimes cause us to feel unconfident in our approach to our own health issues.

I will try to make another appointment, I have a consultation this week with my local clinic, so will see what the outcome of that is and move forward from there

Vey best wishes to you

[summerdown in reply to hunter5582]

your leg pains are worrying and might be cardovascular - can be like sciatica. check with GP who might refer you to a consultant.usually treated with aspirin often given statins as well. If no surgery needed or not wanted by you, keep exercising - walkin/ cycling etc. lose excess weight and walk through the pain.

[Yoganana1 in reply to summerdown]

Thank you, I have started to do some walking now as Chiropractic guy recommended I do it also. It makes your mind wander off into all sorts of things once you now you have one thing wrong with you and it has been playing on my mind.

I am so happy to have found this Forum as it is a blessing to be able to speak to people that are dealing with similar issues also as good as my family are they are not the best to ask these questions to.

[Mostew]

Better to feel silly for a shortvwhile . You will feel pleased with yourself after .I think I was asked if I wanted shared care. Regularly appointments with local hospital . Once a year at Guy's.

Be honest when remaking request. Say you didn't want not to be seen by local hospital but have now been told Shared care is possible . Maybe apologise for being a nuisance. ! ?

[Yoganana1 in reply to Mostew]

Oh really, shared care ? I haven't heard of that before. Maybe that is the way forward then.

Thanks, I would definitely apologise for being a nuisance as I am sure they have many other patients to see. I just wish I had kept the appointment now and not let myself get talked out of the first one as it has only led me to more stress which as we know isn't good for anyone

[ciye]

I got a referral to Professor Harrison, which was just a phone call, no changes to treatment from heamo who I still see.

[Yoganana1 in reply to ciye]

Thank you. I presume that is what it would be for me too

[Exeter21]

she usually speaks to you on telephone appointment if you have problems with medication & symptoms 👍

[Yoganana1 in reply to Exeter21]

Oh really, that's what I have now from my local hospital but I would just like to get a second opinion really so would like an MPN specialist too

[Oscarsboy]

I sympathise as have all your symptoms also. Severe joint pain. Back spasms so painful it locks. Had osteo ,Acupuncture,physio all to no avail and no meds touch it as cannot take anti inflammatory. Also Et jak 2 and on same meds as yourself. Its miserable and i dont no where to go with it next.

[Yoganana1 in reply to Oscarsboy]

It is certainly very painful , I am sorry to hear you are having the same issues. I will mention it to my consultant this week about my health at the moment but I'm not sure he will think it is relevant?

I wish you well and sympathise with you as it is horrible, I hope you can find some help or answers soon.

Take care

[Michali45]

I can understand your dilemma. I just wanted to say that, although, I come under Professor Harrison’s team I have never actually seen her myself. I have always presumed that it is because I am a very simple case of ET Jak2 positive. Whenever I attend my appointments, I am seen by someone different except my specialist nurse, who I am very happy to see. I am on Hydroxycarbamide and low dose aspirin and really have no symptoms, except some fatigue (but I’m old anyway!) I hope you are able to sort out your situation quickly as stress is never a good thing!

[Yoganana1 in reply to Michali45]

Thank you, maybe I am worrying too much ? I would just like to feel well but lately there always seem to be something going wrong in my body !!

No stress is a very bad thing and can affect lots of things so maybe that is a contributing factor to all of this ? it does very strange things to the body and I am trying very hard to keep calm as it isn't helping at all

[RazB]

Hi, there’s a lot of positive info from people replying to you and I agree with them all. I, like you, had an unhelpful and unsupportive haematologist when first diagnosed (18 yrs ago) and it was incredibly stressful, frightening and lonely feeling so unsupported. I too asked for a 2nd opinion and felt really rude and guilty. At the same time I talked to a friend of mine who is a medical consultant in another area and she said very clearly to me “you need to take responsibility for this yourself, otherwise you will not get through it in a positive way”…I remember that now very often. At the time I thought it was a bit harsh but it really helped me to see (as Hunter often says and many others on here!) we are our own best doctors and we ultimately have responsibility for our own s**t! I went to see Prof Harrison soon after that and saw her face to face, she was brilliant, calm, sincere and supportive. I have now been seeing her, or her team, for 15 years. I usually see another doctor and know that she will see the notes before and after the meeting, and oversees her team very closely. She is also very much on hand by email if I need to check details etc. Please…don’t feel guilty or rude for asking for more support, you are 100% doing the right thing. Stay strong and keep in touch on this forum, it’s a gold mine of information and support. 💪🙏❤️

[Yoganana1 in reply to RazB]

Thank you for your very positive reply, it’s been really helpful.

It’s very true and I feel exactly as you say, I’m going against the specialist I have but definitely think I need to take this route for myself

It sounds that Prof Harrison is the way forward for me as I don’t even get a copy of any letters and blood results now yet after my consultations, which I find very frustrating

I’m really pleased to hear you have good care now and hope you are keeping well

Thanks for your help it’s very encouraging.

[LT55]

Our cases can be "pretty straight-forward" until they aren't. I found that connecting with an MPN specialist when things are "routine" can provide reassurances relative to treatment, symptoms, options, etc. And if/when things do veer from the straight-forward path, having an existing relationship with the expert is invaluable.

You have been given excellent advise from forum members familiar with this particular expert.

[Mostew]

Great minds think alike .That's why I wanted to see expert ..

[Wyebird]

hi, I’m under the fantastic Prof Harrison. You might not see her but all her staff are Bril and even the specialist nurses could most probably teach heamos a thing or two regarding MPNs.

At the end of each clinic her team get together and have a team meeting.

Maybe your Hydroxicarbomide doesn’t suit you.

Good luck

[Yoganana1 in reply to Wyebird]

Thank you, it sounds like Prof Harrison’s clinic is the best way forward. I do feel like my local clinic are just guessing sometimes as I seem to get conflicting advice, depending who calls me for my consultation.

I did have a specialist nurse number to call at the beginning but there never seems to be anyone there answering these days so not sure what’s happened there either ?

[Wyebird]

I know someone who is under both her local clinic and Prof H. That means the clinic is learning and she is reassured she is getting excellent care.