Good morning everyone, I have ET jac2+ and have been taking hydroxcarbamide for the last 2 years, in November 2021 all protocols for my little problem was sent to the GP, I should be having blood tests every 3 months!! This was not happening unless I made the appointment, in July a nurse flatly refused to do a test, even though I was running out of my medication,this resulted in a complaint about the way I was treated. In the last year I have had no communication from the hospital or GP I don’t know if my bloods are ok or medication is ok, it’s a nightmare trying to get information from anyone, maybe I should just go with the old saying of no news is good news. What would you do!!!
Advice needed.: Good morning everyone, I have ET... - MPN Voice
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Jules153
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I would insist on blood tests otherwise how will you keep count of your results wish you luck for getting help
I would initially send a complaint to the hospital via PALS. The hospital Consultant has made a specific request that your GP performs three monthly blood tests. Your GPs have not adhered to this request, therefore, you’re being put at risk, and they are ‘failing in their duty of care’. The ‘set up’ is clearly not working and they need to know the issues you are facing.
I am intrigued why the hospital cannot perform the blood tests?
I would rather the hospital do the blood tests and prescribe my hydroxy as boots don’t carry this regulated meds and has to order it’s all a mess ,I will get in touch with PALS many thanks
I’ve just read some of your prior posts. I see your haematologist signed you back to your GPs for monitoring??🤔
I’ve never heard of this happening with MPN patients’. You must have been deemed ‘high risk’ by the WHO standards to have been put on cytoreductive therapy in the first place, which makes you wonder why you were transferred back to the GPs care. What you are now dealing with is precisely why this shouldn’t happen.
I am also on hydrea, and like you, my disease is stable, but I am still under the haematologist. I wouldn’t expect anything less!
Good luck
I totally agree with mhos61. You should be under the haematologist at the hospital. Complain through Pals. Gp’s are great but not specialists regards our condition. I hope you get it sorted
I agree with you, definitely raise this through PALS. You should never have been referred back to your GP to deal with this. I very much hope Jules 153 you get this sorted soon.
What you report is appalling and merits a formal complaint. Ongoing monitoring of your response to treatment for ET using hydroxycarbamide is necessary care. At a minimum you should be receiving a CBC, and CMP at least every three months. Ensuring you remain at your treatment goal and monitoring kidney and liver function due to being on hydroxy are the minimal standard of care.
It is not acceptable that there has been no communication from the hospital or GP. Do you have a patient portal? Sometimes you can check your labs yourself. I am able to do this will all of my providers. Perhaps it is time to consider a change of GP/hospital. Some have reported they had to do this in order to receive adequate care.
Hopefully you are already consulting with a MPN Specialist, not just a regular hematologist. It is definitely time to be in contact with your MPN care team to let them know that you are having a problem and to get feedback on your status. If you have not been able to consult with a MPN Specialist, suggest it is time to do so. Here is a list. mpnforum.com/list-hem./
Wishing you success moving forward.
I have no haematologist or mpn specialist only a GP,when I asked to be referred to a specialist I was informed by the GP that I had seen a haematologist and that was all I needed,no mpn care team either.
That is an unacceptable care plan for someone with a MPN. ET is a rare form of blood cancer that is beyond the scope of practice of a GP to manage. You are taking a medication that requires monitoring by a physician experienced in managing this type of chemotherapy.
It is very important to have a properly configured MPN care team. This includes having a MPN Specialist to consult about your care plan, if needed a local hematologist to execute the care plan, a GP to monitor your other health issues that may have a bearing on the MPN. Your care team needs to collaborate closely on your medical care. It is the norm that you need to be your own case manager and ensure that there is effective communication on your care team. The different providers on your team provide the expertise, but you are the Captain of your care team. You make all of the decisions, including who is on your team. It is also up to you to hold members of your care accountable for the care they provide.
Here is some information from two parts of the NHS on the protocol for hydroxycarbamide (AKA hydroxyurea)
nssg.oxford-haematology.org...
cambridgeshireandpeterborou...
Here is some additional information worth reviewing.
drugs.com/monograph/hydroxy...
online.epocrates.com/drugs/...
oralchemoedsheets.com/sheet...
Wishing you success in managing you MPN care effectively.
thank you for your help.
This is very odd. I am in Australia and was diagnosed with ET ten years ago. I have been under the care of a haematologist through our public health system ever since. I was put on low dose aspirin immediately. My GP is also kept in the loop. I don't have a MPN specialist as there aren't any in Tasmania but my haematologist now has me on 3 monthly CBC'S and appointments. Early on I had an annual appointment which then became six monthly now every 3 months. All during this time I had quarterly CBCs. When I was on meds the blood tests were fortnightly to start with.I am now over 60 which is why my check-ups are so regular.
Very irregular that you don't have a haematologist overseeing your care.
I hope something is sorted out for you soon.
Are you in the UK?
I have been on this forum for six years, and I have never heard of anyone being ‘managed’ by their GP.
You could ask for a referral to another hospital but that would have to be done by your GP. If you want to go down this path you’ll have to be assertive. Are there other GPs in the practice that you could make an appointment with to discuss this further?
yes in the Uk and trying to get hold of anybody to help is a nightmare where I live.
Without naming hospitals, GPs etc, what county do you live in?
Oxfordshire and there is a very good hospital but trying to get a referral is very difficult.
The Churchill is probably what you’re referring to. Professor Adam Mead is renowned in his field.
See the email address of the Myeloid Clinic Secretary in the link below. It might be worth emailing him to see if they are willing to take you on as a patient. They’ll have to say get a referral from your GP or haematologist (you haven’t got one). Then go back to your GP and say you’ve been in communication with The Churchill they’re willing to take me on as a patient (hopefully) but they need you to refer me😁
I had so many problems prior to getting my treatment, trying to get an appiontment for medication was almost impossible . In the end I wrote to the CEO of the hospital concerned, I had a phone call within 48 hours and all was put into action. Take it to the top. Once I was in the system all was well, they have been great ever since with regular checks and phone calls every three months. I asked for a f to f for the next one as had not seen anyone since my diagnosis a year ago in June, and this has also been granted. Push and push until you get what you need and deserver for this condition.
As Hunter says, on HU at least every three months is a minimum. I can't help much with NHS aggravations. But it seems they want to you be a DIY (do it yourself) caregiver, not great medical practice.
As you work on getting it all sorted, is there an option in UK for private blood tests? In US these are quite affordable, I get ads from a lab I went to all the time. It's not a long term solution but could give you peace of mind in the meantime.
I am just astounded by this and don’t have much to add except to listen to the excellent advice you’ve been given here. I’m sorry you’re having to jump through so many hoops just to receive the treatment you are entitled to. Even with a stable condition there is often underlying anxiety with having an MPN, the care that you receive is pivotal to your wellbeing in every way. The best of luck with sorting this mess out. I know you will because the way you’ve been treated is wrong on every level. Hurray for MPN voice and the amazing community!
You are the same as me. I have phone calls from the hemo every 2 months. I make an appointment for a blood test at the surgery 5 days before the phone call. This is sent to the hospital and the hemo discusses the results and medication. I am surprised that a nurse refused to do this for you. I would make an appointment wth th GP to discuss where you go from here. You could phone the hemo and go to the hospital for blood tests. It is unusual for a nurse to refuse to do a blood test.
I’m so sorry this has happened to you Jules. It’s totally unacceptable, I know it may seem daunting but you have to escalate your response not just for yourself but for others. Your Haematologist should never have passed you back to your GP alone. The hospital with have a complaint procedure which will be a great starting place. You’ll probably get much more focused advice from others here. Keep you chin up and keep going.
you should complain . I have same as you and on same medication . I get 12 weekly bloods done at GP but get appointment with heam. After each blood test. Sometimes a telephone consultation which is fine. Heam sends my hydroxyl direct to Gp.
I am shocked to read of your dreadful treatment by both Haemo and GP. really hope you get things on track very soon. I have ET JAK2+ too and have 2 monthly phone calls from Haemo, blood test a few days before by GP Nurse which hospital receives and I have my HU delivered from hospital which Haemo organises. I would say also that you should email your Patient Complaint Service at the hospital and also email the Secretary of the Specialist which mhos61 recommends. Do let us know how things go. Regards, Fran
Hi Jules - I will add my voice to all the others here. This is not acceptable. GPs do not know enough to undertake your ongoing care. My GP could not even spell my diagnosis! I was with a haematologist who would never really discuss any worries nor share blood test results. I am in Northern Ireland and could not find an MPN specialist.
I actually emailed Professor Harrison at Guys hospital and she emailed me back and told me to contact Professor McMullin in Belfast. I emailed her and she telephoned me back and said she would be pleased to see me and arranged an appointment immediately. She was able to answer all my questions and also was in touch with my haematologist.
As Hunter always says you have to be your own advocate. He encouraged me to get an MPN specialist involved and I feel much happier as a result. It also sounds to me as if your GP practice leaves a lot to be desired. No nurse should have the authority to deny you a blood test. The GPs in my practice never refer to my MPN when treating me for anything else.
I hope you get this sorted ASAP. You do need support. Best Wishes
A nurse can only do bloods if a gp has authorised them. How the hospital passed care do gp is beyond me.
I am not sure of your point. I said that "no nurse should have the authority to deny you a blood test". Obviously the nurse in question should have passed this on to the appropriate doctor and not just refused completely. That was taking on more responsibility that she should.
As many have already said that is awful. The hospital should be sending you a blood form every couple of months. along with a phone call to discuss results with you. My blood test form arrives within days of consult so I can get bloods done before next appointment. Contact heamatology asap. They are responsible for you and tests. Your gp is unlikely to have a decent understanding of your condition.
I would write to PALS (email), then phone them as a formal complaint. I had to do that for my mum. They were very good at getting the issue sorted for my mum.Your situation sounds very uncaring!
Good luck!
LadyA
I have been (for the last three years since my husband died) trying to get somewhere
with the so called Haematologists who totally ignored my husband when he complained
about severe side effects from what you have described and got nowhere.
I wish you the best of luck and but if it was me I would go to a reputable health store
because with the attitudes around these days hydroxycarbamide kills.
I have complained to PALS, Health Ombudsman, and no one wants to know.
The PALS stated when I asked why MacMillan was not involved stated that it probably
was not appropriate at the time. MacMillan are aware that my husband was let down
very badly and because I do not have sufficient money to pay advocacy fees then I am
now having to live in a permanent nightmare.
I hope you have success.
Sandra Pearson
This seems dreadful.
I'm in the UK, am under the care of the main hospital in my area, have a clinic phone call every 8 weeks or so, am sent the blood card well in advance of the appointment so that I can go to one of the locations that are part of the hospital (not the GP practice) to get my bloods done and the hydroxycarbamide is delivered by the hospital (actually a Boots pharmacy at the hospital) to my home when I need more. As others have suggested a complaint to PALS (although it looks like the GP practice is letting you down) may well be in order but may I make the following additional suggestions:
- try getting in touch with the haematology team at the hospital and ask if they have a clinical nurse specialist you can liaise with. If so, get their email address and make a nuisance of yourself. Failing that, see if you can find out who the haematologist(s) are and try and contact them;
- were you sent a copy of the information originally sent to your GP? You should have been and if so there should be at least the name of who did the letter with some form of contact details;
- maybe ask the GP practice for a second opinion/referral to a different location if possible. In some respects it looks as if the hospital have dumped you on the GP practice when as all the others suggest you're the responsibility of the hospital and should be under their care, not the GP as most don't understand MPNs;
- once you do start getting your bloods done regularly, ask for the actual data and keep a record of the individual counts so you can keep track of things. All the experts in the MPN Voice (and similar) webinars recommend this.
EPGuy asks about getting blood tests done privately - I would have suggested investigating Bluecrest as they do haematology profiles and I had a screening with them 3 years ago which first identified my problem (I have PV). Sadly they've recently removed the haematocrit measure from this but do quantify platelets, red & white blood cells and haemoglobin. There may be another firm that includes haematocrit and you might be able to do a self-test at home and post it off for analysis, try searching the internet.
As hunter says below (and frequently, rightly so) we need to be assertive in the management of our own care rather than be passive and just be 'done to' by others. We shouldn't have to be like this but sadly it's the way it is sometimes so as the others say make a nuisance of yourself, be the well-informed patient and don't take no for an answer.
Good luck, Paul
I’m confused, why did the nurse refuse to do a blood test? Had you already got a blood test appointment ?
she said I had my medication and didn’t need a blood test,I had 6 tablets left and was due to go on a two week holiday!! She had her back to me while explaining this, she never spoke directly to me, it was very upsetting.
seems to me a huge letter of complaint to the GP first and Pals second. How dare she say that! She doesn’t have the expertise or authority to deny you a blood test if that’s what your booked in for.
How did you manage your holiday without meds?
Sadly this is indicative of our health service these days, it's appalling and you only realise this fact once you utilise their 'services'. As has been said complain, complain and complain again, its the only way you get anything done.
Hello Jules,
I don’t wish to pry, but if you are over a certain age, it seems that some doctors are not considering that we are worth treating. I had a similar experience with a haematologist. In the end, I wrote in no uncertain terms, to PALS, with a copy to the person in charge of the surgery that I attend.
It is imperative that people with MPNs are monitored three monthly and obvious that the doctor is unaware of the consequences of this not happening. The costs to the NHS if you were to have a stroke or heart attack would be huge.
Do point this out in your letter and also mention that they have been warned and you or your family would be seeking compensation if this was to happen owing to lack of care.
I wish you well Jules.
Hugs,
Marcia
Insist on blood tests and make a formal complaint to your health board and consultant.
Jules for what it is worth I had quite a bit of issue with a practice nurse within my GP surgery. Could never get the appointment with nurse even although I had to explain each time I was making it (why I needed it for haematology appointment week after) was alway an effort or battle. One time she refused to do BP even altho on meds for Hypertension. When I continually requested it - she did it twice then wrote it down on a bit paper (it was pretty high) said three times “I have not got time for this” and threw the bit paper across the table and told me to get the haematologist to do it . Funnily enough I kept the bit paper with her writing on it
Long story short I complained about her behaviour went to a full complaint procedure and came back with a full apology from practice and so called her via writing not in person . I have never gone near her since. The point of the story is don’t put up with it . Take advice from our fab people here and be ur own advocate and fight for ur care because if u don’t fight for it nobody else will. Good luck Px
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