hi folks, just want a bit of a moan, had bloods done last Tuesday, and a telephone conversation was booked for the following day at 12.15 pm and hour and a half later I do eventually get a call from a doctor, could not pronounce his name even if I wanted to, no apology nothing went straight in and asked how I was feeling, went to tell him that I have had a few issues of late, he cut me short and said platelets were fine at 396 slightly up from three months ago, asked me who did my prescription hospital or doctors, I duly said doctors, he then said fine and that was IT, nothing about having bloods done in three months time nothing, found it really strange and unsettling as over the last couple of years due to covid I have not seen a doctor face to face always a telephone conversation which in theory is fine, but i have spoken to so many different doctors, it would be nice to have a bit of consistency for a change and a doctor I could relate to on a regular basis, is it just me or dose anyone else have this problem, different doctors all the time, and half you cannot understand as they are from abroad and their English is not good, to what doctors we have had in the past being poached to the big teaching hospitals like Kings, and no one to fill the gaps at the local hospitals.
Never have I felt so alone as I do at this moment with my ET which I have had for nearly ten years, I am under a lot of stress in my personal life what with as some of you might remember with my daughter having Parosteal Osteosarcoma and it not behaving as it should.to hubby having a knee replacement and it not healing properly and everything is on me, so feeling a little low, when I try to speak with my own GP you have to make an appointment not only for a face to face or a telephone conversation which you will have to wait up to five weeks for, so I end up not bothering anymore.
Sorry to be such a pain but at least I can come on hear and let go of my feelings.
Jean
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Superwoman
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feel sorry for all your doing and suffering I was diagnosed with et. in august my heamatologist is new only seen him once before. I had to bring up that my ct scan was a month late? He said oh yes I will sort it. Not giving the best help you wish for at such a Cary time I wish you all well x
Hi,Sounds like you have a lot going on and you're going through it. I empathize with you, it's very frustrating we can't see GPs as in pre COVID days, I have never even spoken with a doctor at our surgery about my diagnosis which was pre COVID.
So dare I say it? Are you up to getting yourself an appointment with an MPN specialist? Even for one appointment. It's advice I was given and took . That one appointment has changed everything for me.
I do not blame you for moaning one bit. No one should ever tolerate such inadequate care. You have every right to expect to speak to the same provider every time you have an appointment, to get to choose your provider, and to have that provider provide compassionate quality care. What you have described is woefully inadequate and inappropriate care.
I am not sure what hospital you are based in, but perhaps it is time for a change. You may also need to file a formal complaint about the low quality care you have described. Inadequate care can only continue when it is tolerated. Suggest it is time to be less tolerant. Assertive patients receive higher quality care. Passive patients do not.
It is certainly understandable that you would be at low ebb with everything going on. I hope and pray that your husband, daughter and you will all be in better health and spirits soon. Meanwhile, hang in there! And know that you are not alone.
Drs should have ACUTE appointments so what happens when you turn up and want a slot?
I went 1 year 3mths with no one changing me off Metroprolol which made me breathless and fatigue.
NZ does not give a follow up for patients who have had a stroke, have AF and diagnosed with thyroid cancer. The monitor showed a H/R of 185 with Metroprolol.
I fought for a specialist but then I was still left with H.R avge 156 still uncontrolled.
Fight for managing your health. Use your computer goggle to join research companies such as your Heart Foundation, BMJ and Radi...
I am so sorry to hear of your struggles. Our disease is sometimes hard to cope with and I can empathise with how you are feeling, this forum is great for sharing how you feel. I have taken the step of making an appointment to see an MPN specialist. I have had ET for 22 years, please know you are not alone.
You really have a lot on your plate at the moment.
You know, you really have to bang the table. If I were you on the day of your telephone appointment I d just turn up at the hospital and confront them. DEMAND to see a haematologist. Really really make a polite but tearful fuss.
You can actually go to any hospital you wish.
I decamped from my local hospital 10 years ago because of shoddy treatment ( put up with it for 4 years, I have PV) and now attend the Christie in Manchester where obliging amazing and efficient are their middle names - so there are good places out there. Where do you live?
I too have been having local bloods and a phone consultation.
However I found out that local blood tests were way out ( 2 days apart local bloods showed a haematocrit of 41 - Christie blood test 45.5. The difference between a venesection or not.)
I now drive an hour and a half to Manchester for a blood test ( in my specialists words - let’s trust the christie test shall we) and sit in the car park for my phone consultation!
We have to be our own project managers.
We too have the same gp set up as you. Scandalous!
One of the gps aged 52 has the immense cheek to put on his profile on the surgery website and I quote:
“ I now work half time. This gives me more time to relax, to tend my garden, to walk in the fells and to spend time with my ever expanding family”
Probably on a nice day pension.
Quite frankly I m speechless.
Cup half full Jean, get out there and jolly well tell them.
hi Louise I actually used to travel to London to see a professor as I have a very rare leukaemia who appears to be the only person who knows all about it. I live in Liverpool and see a local haematologist in between but again like everyone else not been since before the pandemic and don’t always receive phone calls from Guys hospital I wait all day and can’t even return a call to speak with them so have to email? I do now have a face to face appointment in March next year.
OMG louise, why would a GP put that on his profile, thats a slap in the face, but its the same at our surgery, although they don’t put things like that on their profiles they dont give a toss, as long as they get their huge pay packets every month, life for them is very cushy. I had mine refer me to a social prescriber because of the way I was feeling, ok she was very nice and tried to be helpful but did not understand what and how I was feeling, she tried to point me towards getting pension credits or an attendance allowance which I have tried to get, but they refused one because my husband gets a private pension and I am classed as not ill enough for attendance allowances, got to be on deaths door, not for the fact that I take chemotherapy drugs daily to keep me going.
Hey ho this is unfortunately the world we live in. So I try to keep calm and carry on. 🤦♀️
Good morning Jean. My heart goes out to you. Better not to speak to anyone than speak to a medic that brushes aside anything you need to discuss. I would certainly put a complaint in re his attitude, do you have a specialist nurse in the unit? If so maybe a word with her.
You are dealing with such a lot of physical and emotional problems not just for yourself but your family, where to get that support is impossible now. But I would say be insistent re speaking or trying to see a doctor. Your mental health is the hub of your family .so has to be addressed..I have been going through similar problems myself and understand the frustration hurt and feeling of helplessness. But most of all the feeling of trying to help …but you need the help. First speak to your specialist clinic nurse , ask to see another haematologist. And of course your GP.. it appears that the primary care is being run by the receptionists that are the gatekeepers to getting to speak to a medical person . You have to get help and some reassuring answers. Please keep on till you get some help.
Hi Sandy, yes put a call in this morning for one of the Haematology nurses to call, but the secretary called first to see what the call was about rather than letting me speak with a nurse without knowing what it was about, explained the situation, was told I might get a call within the next few days 😡 depending on what I needed to speak to them about but she did not think it was that urgent.
I am speechless that you cannot even get through to your nurse without an inquisition from a non medical person. The situation is so distressing and sad. I’m so sorry you can’t even talk to someone who could give you reassurance, and support. You have loads of support from us all on here, but that is not practical help. All we can do is to send you a huge wrap around hug.
I really really hope you get a call from your nurse very soon.
So sorry to hear what you’re going through. It’s especially hard when your family needs you but there is no one taking care of you. I don’t know how the medical system works in the UK, but it sounds like you need to be a little more proactive and take things into your own hands. You’ve gotten some good advice here. I wish you all the best going forward.
Hi am really very sorry for all that you are encountering at the moment, and this treatment is woeful. However I am aware how hard you have to fight to get things done, moving or even started. If your hospital has a PALS (Patient Advice Liason Service) please contact them and let them know what is happening and that you are really very unhappy with your treatment.
""""What happens when you complain to PALS?
PALS can: Listen to your concerns, suggestions or queries. Help sort out problems quickly on your behalf. Put you in touch with other sources of help.""""
I know of more than a couple of people recently used this service and it has proved to be very helpful. Hope this bit of ino may help you. I hope you and your family all start to improve very soon.
So sorry for your situation -I so hope you get the help you need from this line.
I thought it was just old people ( like me aged 80 !) that would be left with no personal contact . I have had ET for years - great support from then GP and from
consultant who sadly died . Have bloods taken by GP nurse twice year followed by telephone call to say repeat prescription . Not asked so I say nothing about how I am . Not good to be old and no wish to go private . Just so sore .
I have no answers for you but have lots and lots of compassion and I am wishing you healing for you and your family. I know issues with doctors not paying attention is so difficult, so perhaps it’s worth it to ask around and see if you can find the right one for you.
do you know that it’s not your fault, just bad care.
Many people have problems understanding some accents over the phone, particularly the hard of hearing and the elderly. I think medics should bear this in mind.
Hello Superwoman! Great name by the way! Lots of good advice above. I just want to empathise with the experience of the phone calls - the waiting (in isolation wherever you are vs hopital with people around), the brevity, the seaming lack of basic humanity - even though they are indeed looking out for you,…I was only diagnosed in February this year but found that call, and the 6month follow up one (4mins) felt emotionally really brutal and distressing due to the ‘routine-ness’ for the dr and lack of space for ‘me’ even though I received the most important and essential info. A friend who has bowel cancer finds drs are lovely & attentive in person, but when given a telephone and a list are just concerned with thundering through it becoming quite different people. I later discovered a lovely Clinical Nurse Specialist dedicated to the MPN patients in my hospital who is available for hearts & minds chats too, hopefully you’ve access to one of those?! Have you considered joining MPN Voice’s buddy programme? For chats with another person going through a similar experience? Theres another MPN Voice ‘in-person’ patient forum coming up in Cardif I think, if thats near you? Love & Light to you and your family 🌿✨
Hi superwoman I feel for you you have a lot on at moment and a doctor or nurse should be there for you try to look after yourself and sending best wishes Poppy x
Jean I had same situation last month at my appointment not my usual Haemotology man. This woman Dr did not even ask how I was I waited 2 hours she sat with her head in screen of computer tried to get me back onto Hydroxy that I had reacted badly to & put up a million reasons to not issue peg already approved for me. She wrote prescription told me to go to pharmacy & walked out of the office. Hence I contacted Professor Harrison & following a call from her actually had a normal conversation with an intelligent interested person . We are just on a conveyor belt that I liken to being at the till of a supermarket. Platelets ok ✅ out the door. Platelets not ok nor medication they go blank. Thankfully by reading everything on your complaint you sometimes know more than them. This was my case when they tried to give me a large starting dose which I refused . Try & see an MPN expert or phone discussion next time with one 👍
I'm so sorry to hear that the [alleged] healthcare professionals upon who you depend treated you so cavalierly.
I am ashamed of them, and proud of you- for not holding it all in, stiff upper lip and all that BS!
Remember pain shared is lessened; joy shared is magnified.
We will always be here for you- so vent whenever you need to, and hopefully soon, you will be able to share some good news- even thought right now, the light at the end of the tunnel is so hard to see....
We'll happily jeer [at the lowlife doctor-wannabes who dismiss or ignore your needs, feelings, and importance,
Even better, we'll cheer for you when things turns around.
Remember also, God never gives us more of a burden than he knows we can handle, but sometimes we all wish that he didn't have quite so much faith in us....
Best,
PA
"Keep calm and soldier on" on a union jack background
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