Hello : Hi I am new to this site and finding it... - MPN Voice

MPN Voice

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Oscarsboy profile image

Hi I am new to this site and finding it very difficult to get my face to face appointment with the Consultant at the hospital, who has phoned me and told me I need this to start treatment, and should be seen in July, had bloods re done again ready for appointment. However then sent another phone consultation for August. Contacted hospital and told by the secretary no face to face appointments until January but will get back to me. So far nothing. Where to go from here?? Advice would be very welcome. Thank you.

50 Replies

Is this in the UK? I had a face-to-face appointment a couple of months ago (new haematologist and I had been a little shirty with her previously, not her fault but the previous doctor had been better at talking than listening, and dangerously relaxed about allowing my haematocrit to drift upwards), and the most recent one was back to being over the phone which I prefer in many ways. While there are advantages to face-to-face appointments there isn't a huge amount that can't be done over the phone. I had my abdomen palpated a few years ago when I first started treatment to see if there were signs of an enlarged spleen, and apart from the bone marrow biopsy shortly afterwards there has been no real need for me to see a doctor in person. Are your blood test results seriously high in any respect? I'd get on to my GP because if they aren't allowing treatment to start without a face-to-face appointment and aren't offering such an appointment for another six months, that's really not acceptable.

Hi, thank you so much for your reply. Yes this is the UK, the local hospital I am now under. The last telephone consultation the consultant was lovely and said you have to have a face to face appointment to start the treatment as there are papers etc that have to be signed. She did say it cannot be done by a phone consultation, hence the sticking point at present. If I do not hear anything during the week I will try back via my GP but that may be a good while before I can even get a remote appointment with them! Platelets are much higher than they should be and diagnosis of ET has already been made having had bone marrow biopsy and Jak 2 gene diagnosed. The problem is the left and right hand at the hospital do not seem to know what each are doing and its just conflicting information.

Sounds as if they want to start you on hydroxycarbamide, which does require you to sign consent forms, but that shouldn't be an insurmountable issue. There should be a patient support and complaints team at the hospital (may be called something different), and it's worth getting in touch with them. PALS (patient advice and liaison service) can also be helpful. Not remotely connected to this (although she had PV too), but I went to pick my mother up after a long stay in hospital a few years ago, a discharge that had been planned for weeks. They didn't have her medication ready because the ward hadn't asked for it, and the hospital pharmacy was just too busy to sort out a couple of boxes of pills. The nursing home wouldn't have her back without the pills. Four hours after I had arranged to collect Mum I walked down to the PALS office. A phone call from them, and the pills were waiting by the time I got back to the ward. As @friendofpiglet says, get assertive with them.

nhs.uk/nhs-services/hospita...

Yes that's quite right that is what they are stating as prescribing. Thank you everyone for your help and adivce. Very grateful.

Red64 profile image
Red64 in reply to Oscarsboy

Hi, I started hydroxycarbamide 8 weeks ago. I was diagnosed last year and have only had telephone consultations and a scan and regular blood tests. My consultant went through all the detail on the phone about the treatment, sent me the consent forms out and all the information we had discussed so I could read over it again, a specialist nurse then called me to discuss everything again and ask if I had any problems or questions. I then signed and returned the forms and when they were recieved I had a further telephone consultation with my consultant and my tablets were delivered to me the same afternoon.

paradiastole profile image
paradiastole in reply to Red64

It's worth asking whether your GP has a "shared care agreement" and is willing to prescribe hydroxycarbamide (an SCA is when a GP prescribes medicine for something being treated at a hospital). Mine does, so instead of having to arrange delivery from the hospital pharmacy I just order a repeat on the Patient Access app, and pick it up from Tesco five minutes walk away. Only difference from losartan or atorvastatin is that they can't prescribe more than four weeks of hydroxycarbamide at once.

Cindy12 profile image
Cindy12 in reply to paradiastole

My GP prescribes 3 month supplies of hydroxycarbamide!

Oscarsboy profile image
Oscarsboy in reply to Cindy12

That's good to know. Thank you.

paradiastole profile image
paradiastole in reply to Cindy12

Interesting - perhaps it's a practice policy, because I asked specifically about getting more at one time and was told they couldn't do that. Not really important because during the same conversation I asked about getting a prescription payment exemption certificate and now have one, and it's not much of a hardship to have to call in at the supermarket pharmacy a little more frequently.

Wyebird profile image
Wyebird in reply to Cindy12

Gosh that’s unusual as the GP doesn’t usually do that. Apparently that way your meds come out of the GP’s budget and not the hospital’s.

My hospital prescribes 6 months of hydroxycarbamide at a time after (since Covid) telecon with doctor. In between there is another review with a nurse, but no prescription needed. They have posted the last 2 out even though I could easily pick up.

Oscarsboy profile image
Oscarsboy in reply to Red64

Thank you, maybe this is the route they are now going to take. I am still waiting to hear.

Oscarsboy profile image
Oscarsboy in reply to Red64

Have you adjusted to the medication ok?

Red64 profile image
Red64 in reply to Oscarsboy

Hi, yes I am fine on the medication. I was prescribed anti sickness but haven't needed them. No major side effects

Simris profile image
Simris in reply to Oscarsboy

Just reading this now and quite shocked that everyone is saying paperwork needs to be signed before hydroxy can be prescribed....reason I'm shocked is that I've been on hydroxy since October 2019 and I was never asked to sign paperwork. The other point is I've been seeing my haemo face to face for few months now, my hubby insisted on this because I'm partially deaf and really struggled with phone apts. Phyllis x

Oscarsboy profile image
Oscarsboy in reply to Simris

Maybe this is something more recent, but I have a friend also on extensive chemo and she also had to sign to agree to treatment etc, (I guess disclaimers) come into this in this day and age. Sadly its the era in which we now live.

Wyebird profile image
Wyebird in reply to Simris

I can’t remember signing for hydroxicarbomide but I did for anagrelide and interferon.

Oscarsboy profile image
Oscarsboy in reply to Wyebird

Thank you

Runner999 profile image
Runner999 in reply to Wyebird

Signed !

Sounds like you've got a substandard hospital admin - I have no problems getting face-to-face consultations (prefer 'phone but occasionally face-to-face is better). I also have to have venesections which are difficult over the phone!!!

Surely you could discuss treatment by phone and any documents to be signed could be sent and returned by post?

The other way is to get your assertive hat on and insist firmly. Squeaky wheels get the grease after all.

I have already had three telephone consultations, and the last in June the Consultant stated that the treatment cannot start without the F to F appointment first. We have discussed the treatment on the phone during the last two consultations but she said there is a lot of stuff to go through first! Also I feel it would be helpful for a full health analysis to be on record as I had polio when I was 7 (prior to vaccine availability) and then ME badly for 5 years in the 90's which caused chronic fatigue. Very thankfully I did recover, however there is an underlying factor which can sometimes kick in for periods of time ie stress, overdoing it etc. I have phoned the secretary and was assertive about getting it sorted out. When there was no call back as promised have now put in writing also attaching copies of the info sent to my GP by the Consultant stating F to F now needed. It's a matter of now who to get more assertive with. I guess the other option is to contact my GP (If you can get an appointment)!!

Wyebird profile image
Wyebird in reply to Oscarsboy

Oh I keep reading your replies to others and I’m getting more and more frustrated for you. I think you are taking the right course of action but where does that leave others who are unable to express themselves?I think you are being treated appallingly.

Sounds as if a multi prong attack is needed.

PALS, as someone has mentioned also your MP.

How about another haemo clinic?

Please keep us informed.

Oscarsboy profile image
Oscarsboy in reply to Wyebird

I have phoned the hospital again this afternoon and spoken to the/a secretary once more and spoken of increased symptoms. Her reply was I do not know what to do we are so short staffed one is off sick (virus) it seems, others isolating. Clinics are all full. She also has said she is going to speak to someone and phone me back. I am waiting yet again. I have just tried to book online phone appointment with my surgery - 24th August - is what they offer, after we have gone off (hopefully) on holiday. What a mess.

Wyebird profile image
Wyebird in reply to Oscarsboy

😡😡all you want is to be treated fairly. You don’t want to jump the queue. I lost for words!

Runner999 profile image
Runner999 in reply to Oscarsboy

Surely, if the consultant has said F2F; that is the appointment that he/she should have recorded as necessary and told the staff to make for you?

Oscarsboy profile image
Oscarsboy in reply to Runner999

Yes exactly but they tell me there are not any until January!! The Consultant who phoned me is now off sick. My next step is writing to the CEO of the hospital directly I have managed to find that contact.

Wyebird profile image
Wyebird in reply to Oscarsboy

Brilliant keep us in the loop

Oscarsboy profile image
Oscarsboy in reply to Wyebird

As soon as I get any further I will report. Thank you all for your support.

Runner999 profile image
Runner999 in reply to Oscarsboy

I was originally referred to The Whittington, my local hospital. They had a 6 month wait list as I think their clinic deals mainly with regular appointments for long term haemo patients.So I asked my GP to refer me straight to UCLH - where I only waited a couple of weeks. The appointments were thick and fast for tests including a scan and BMB, diagnosis (ET , CALR). Prescribed hydroxy within 3 months as I also have peripheral arterial disease.

But remember, this just brings down platelets to reduce chances of thrombosis, stroke etc. It is not a cure for the condition. There is no great rush to start for those who have not already suffered thrombotic incidents.

Oscarsboy profile image
Oscarsboy in reply to Runner999

Thank you for your help and advice. I can certainly bear it in mind. I have already had a CT scan and BMB in March this year with the diagnosis of ET with Jak2 positive so all those tests have already been done its just getting the Hydroxy treatment put in place which was supposed to happen in July. I would not be overly concerned if it were not for heightened symptoms especially the vertignious situation, plus feeling out of breath when bending. I have lived with the headaches and pins and needles, burning feet etc since early this year and some relief from the discomfort would just be welcoming now to try and lower the platelet level.

Runner999 profile image
Runner999 in reply to Oscarsboy

I am asymptomatic and so do not know how well symptoms are allieved by reducing platelets !

Oscarsboy profile image
Oscarsboy in reply to Runner999

I was asymptomatic from Dec 2019 when I first discovered my count was rising until early this year when symptoms started kicking in. It was only through my checking my blood test results through our online patient service, having several tests a year for thyroid check. I used to ring thru to the surgery and was told yes all tests back ok. When I actually looked through my results which were available online, I found my platelets had been going up for 18 months and no one picked up on it or mentioned it. It was only due to the fact my father died of a platelet related disease (nearly 40 years ago now) that big alarm bells started ringing and I decided I needed to contact the surgery and find out what was going on. Initially sent for lots of checks, scans etc, and as they were clear referred to haematology where I am now. My father's issue was different to mine, but if I had not sounded out my GP over this and it having been left for so long before anything was done, it would have become very evident by the beginning of 2021 that something was not right. It appears you literally have to be on top of everything yourself these days as I am having to do now keep chasing up for an appointment.

Runner999 profile image
Runner999 in reply to Oscarsboy

Sorry to hear this. My GP picked it up to refer me from well woman blood tests - I assumed there was nothing to worry about when they asked me to have a repeat test straight after one which was just a day after yellow fever vaccine - assumed that could play havoc with bloods - but apparently there had been a rising trend too!

Sometimes I think it depends on whether your GP has come across these things before as to how aware they are.

My mum's sight in one eye was saved by a GP who gave her a huge dose of steroids in surgery before sending her to the eye hospital (she visited too late for first eye) - but a friend's father lost both due to his GP not recognising complaint was Temporal Arteritis (sic)

Hello and welcome to the forum. Glad you found your way here.

I will join the chorus and suggest that it is time to be assertive. Assertive patients receive higher quality care. Passive patients do not. It is up to you to advocate for yourself. This is true in all healthcare systems.

It is also true that educated patients receive higher quality care. Here a couple of articles on treatment for ET.

mpnjournal.org/how-i-treat-...

legeforeningen.no/contentas...

Do note that there are two first-line treatment options for ET when cytoreduction is needed, PEGylated Interferon and hydroxycarbamide . For lower risk cases, the protocol is usually aspirin and monitor. Do be sure the review all of your options with your hematologist. This includes a review of the benefits/risks for each of your choices. I have no idea which risk category you are in or whether cytoreduction is indicated. This is another thing to discuss with your care team.

It is also advisable to include a MPN Specialist on your care team. Here is a list. mpnforum.com/list-hem./

All the best to you. Please do let us know how you get on.

Oscarsboy profile image
Oscarsboy in reply to hunter5582

Thank you so much for all your info and help. I have commented on the reply above which will fill in up to date situation. I am grateful to you for the links you have attached.

Try to find a MPN specialist. They are the gold standard for our illness care. It is very frustrating trying to get care and doing it in person during the pandemic. Try to insist if possible. Are you fully vaccinated? If you are then it may help! Best of luck to you.

Oscarsboy profile image
Oscarsboy in reply to IrishHiker

Yes am fully vaccinated, but strangely many more of the symptoms kicked in about three weeks after my second jab.

Oscarsboy profile image
Oscarsboy in reply to IrishHiker

I have found a list through a link someone kindly put on here and think Guys is the closest for specialist to Kent.

I've had 3 monthly phone consultations since the pandemic. My Haematologist said in April if I wanted a face to face conversation then let them know. I have my next one on Wednesday this week, which I have elected to do over the phone. Strange how different hospitals have different ways of doing things.

Hi. It sounds pretty standard but if you’re starting meds then you might need to sign a consent form. I did for PegInterferon & then Hydroxy. I’ve found phone consultations absolutely fine. Not been rushed. Have your questions ready. Take care x

Oscarsboy profile image
Oscarsboy in reply to DoubleF79

Thank you.

Hi. I am UK. I was diagnosed February, had information posted to me and then a face to face appointment to sign consent forms for hydroxy as well as being assigned a specialist nurse I can contact with any questions. Since then several phone consults and I will be having another face to face in 8 weeks. I hope you get this sorted in a way that works for you.

Oscarsboy profile image
Oscarsboy in reply to Conneryfan

Thank you, your situation sounds as though it has worked out ideally. I hope it gets sorted too, it is the lack of communication after phoning speaking to the secretary, who promises to phone you back and over a week later still silence. Then writing and still silence.

Hi I hadn’t had a face to face for about a year. The only reason I went to clinic is because I went onto interferon and required a hospital Appointment and I’m being closely monitored are you newly diagnosed?

I’ve just read your reply to others. I think you need to keep phoning that secretary, further more put it in writing stressing that you have been diagnosed and that the haemo says you need to come into clinic in order to start treatment.You would like clarification.

Good luck this is a worrying time for you.

Oscarsboy profile image
Oscarsboy in reply to Wyebird

Thank you for your message. I had the official diagnosis in Feb/march after the BMB which showed up Jak 2 gene . Since then have just had the two telephone follow ups and still no confirmation of anything other than another phone consultation next month, (which was supposed to be face to face) that is after phoning the secretary and writing again. As yet no meds started.

Jynx93 profile image
Jynx93 in reply to Oscarsboy

I was diagnosed in June ET Jak2+. I was given a telephone appointment but I insisted on it being a face to face one. They changed it without a problem

Oscarsboy profile image
Oscarsboy in reply to Jynx93

Am glad you were able to do that. It has been a huge battle here to get the F to F but thankfully yesterday that happenedwith the Specialist Nurse. I now have all the info and the meds. Due to take One three times a week to start but waiting for the result of another blood test carried out yesterday in case it needs tweeking. Phone follow up next week. It is such a shame that sometimes you really have to battle to get what you need, but am very thankful we have now achieved that.

Jynx93 profile image
Jynx93 in reply to Oscarsboy

Glad you got it sorted

🤬🤬🤬🤬🤬

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