Hi, I was diagnosed with ET four years ago and have been taking Hydroxycarbamide and asprin since then. Due to the pandemic I have not seen either my consultant or a CNS for over two years I have regular blood tests and then a telephone call. I had a telephone call yesterday that was only one hour late ( last time it was six hours late), it lasted fifty seconds and I don’t have a clue what was said as the Dr couldn’t speak fast enough! I know I should have asked her to slow down but I couldn’t get a word in. I contacted the CNS after who has just replied with an apology and no information as to what is happening re my medication, I feel totally fed up and frustrated as I constantly have to chase my medication as the pharmacy can only give 12 weeks supply and telephone consultations are 13 weeks apart. I have asked for this to be addressed but I feel like I am being ignored. Sorry that I am ranting on but just needed to vent my frustration.
Thank you so much for sharing with with us. I hope you are doing okay?
I am so sorry you are feeling this way and unfortunately Janet, we have heard similar from many others within our community.
We understand that the NHS is under huge strain and sadly covid still is having huge affects on time and capacity for health professionals, however you at the very least should be able to have your questions answered whilst your appointment remains via the telephone.
We understand that it can feel so frustrating when you are given very little if no time at all to discuss or ask questions when you are talking to your consultant & I am pleased that you reached out to your CNS and please do use that service in future as they can help relay information back to your consultant and also be a good support to you.
May i ask Janet, was your CNS able to reassure you that they would find out information for you & contact you again? If not i would encourage you to call them again or indeed if you would rather you can certainly ask to speak with your consultant again.
Please know that you do not need to wait to be contacted for your next appointment. You can request a further call via the haematology secretary, if you think this may help, as it would allow you to highlight your concerns and explain that you had some remaining questions to ask. It can also be helpful to note these questions down in advance or as they pop into your head so that if you do feel rushed you have everything to hand.
Please also do know that if you would wish to talk anything through with our support service team, we would only be too happy to do so- Blood cancer information and support by phone and email | Blood Cancer UK.
Best Wishes, Lauran
Oh @JAS I can understand why you feel so frustrated and I am so glad you felt you could ‘vent’ on here and I am sure it is familiar to many of us on here.
@LauranBloodCancerUK has given you a good reply.
I have a head wound that has not healed since Oct and I have seen a GP nurse from daily, 3 times a week to twice a week, usually first thing in the morning. Therefore I have got to know them well.
They have been telling me the problems the surgery has had that impacts on the services they can offer.
Covid has hit them so often that a couple of times all the GP’s or all the nurses have been struck down or had to isolate at home. A lot of them have school age children, which does not help.
For a very long time they had to take a test themselves daily.
They wear and still ask patients to wear masks even though it is not enforceable.
Yes, I also had 4 weeks supply of medication instead a months supply, mad.
I feel better after my tiny rant.
I must end by saying how lucky I have been with my GP nurses they have been so brilliant.
Please keep saying how it is on here, it’s our space.
Look after yourself and be ‘pleasantly assertive’.
Thank you for your reply, I did receive a response from my CNS which unfortunately was just a “sorry” and no explanation or advice. To make me feel even more upset my next appointment arrived for March 2023, I am not sure if this means I will not have to take any more Hydroxycarbamide, I have left a message for my CNS but I will call the medical secretary as you advised and see if I can get some answers. Thank you for your help. Janet
Please let us know how you get on @JAS.
A while back I got an appointment for the following year and I just burst into tears and it made me feel just an NHS number and not a patient with medical needs.
I have found that the ‘pleasantly assertive’ approach works for me on the phone.
Look after yourself
This sounds pretty appalling, but there may be positives. I’m in a similar position clinically, with ET on Hydroxycarbamide, but fortunate to have had excellent contact with haematology in Aberdeen, at least up to now. (Mind you, I’ve been seeing the department for longer than most of the current staff!). I wonder if it would help if you could come up with a list of very specific questions for the nurse; my suggestions would be
- Are my platelet numbers within the accepted level (mine rarely are, but that’s another story).
- Are the other blood parameters in the acceptable range?
- Do I continue with the hydroxycarbamide at the same level (the answer will very likely be yes). 4. Are there any other symptoms I should look out for?
Ask for specific answers to these questions, and if you feel you have not had them, ask again. If this doesn’t work, you may need to escalate a complaint, but in your position, I would actually take their apparent lack of interest as possibly being positive. If they don’t feel they need to see you for a 12 month, it’s quite likely that your condition is as good as can be expected, so try not to worry too much. I’ve not been in to the hospital for two or three years now, but have had brief 3 monthly chats with the nurse, usually accompanied by a letter saying basically “carry on as you are”.
If you have particular worries that are still not covered, look at MPNvoice, who are the dedicated charity for ET. When I did have a problem (with another cancer, which could impact on the ET) they were able to get me the advice I needed.
Sorry, just noticed another point in your letter; you say you are only given 12 weeks HC between 13 week appointments as the pharmacy “aren’t allowed to dispense more”. Where is this, as that sounds crazy. Mine is prescribed via the GP, and I just ring up when needed and it appears on the doorstep from the local pharmacy. Who prescribes your’s? They should realise it’s just a pretty routine repeat prescription.
HC is a fairly cheap medication, so cannot see any reason for difficulty. The Darolutamide for my prostate cancer IS a different problem; it’s apparently £35 a pill, I need 4 per day and it can only be provided via specially selected pharmacies, who guard it with their lives!
I have been on Hydroxycarbamide and Aspirin for 16 years for Polycythaemia and for the first few years saw a consultant haematologist. I was then passed to specialist nurse as my readings where fairly stable. My next 3 monthly appointments were always made as I left the hospital. During Covid a similar setup applied with telephone consultations and always receiving my appointment for the next consultation a few days later by post. I have never been offered help understanding my condition or was even told Polycythaemia was a blood cancer but I read articles and felt OK so just carried on and it just became an unfortunate condition a bit like wrinkles and tummy fat. BUT last time I did not receive my next appointment and when I rang to see why I was told I would get an appointment as one became free. Now I realise how much I have relied on the way my treatment has been organised, I suddenly feel bereft of help and very worried about not having the medication when I rely on it to keep me alive. I cannot believe such a small change can have such a big effect on my mental wellbeing and realise its the not knowing if you will be cared for. Another BUT, thanks to Blood Cancer Society which I only found in lockdown, I will cope knowing I am not alone with the problem. Thank you all, lets hope things will get better soon for everyone.
Hi @Judith yes, covid times really mucked everything up didn’t it, the NHS now has such a backlog. My GP surgery get so short of staff because of Covid.
I was diagnosed 18 yrs ago with Chronic lymphocytic leukaemia (CLL) and nothing was explained to me either and I did not know it was a blood cancer for many years. I just accepted what was said and done.
My appointments were also with a consultant for many years then I was referred back to my GP with the proviso that if anything happened I would be fast tracked back… I felt abandoned and bereft at the time.
I also find I have to chase appointments and medications.
I have really appreciated the Blood Cancer UK support on this forum and on the support line, lockdown has definitely exacerbated mental health issues.
Look after yourself and take care
My prescription is issued by a consultant at my local hospital trust and I have to collect it from the hospital pharmacy 2-3 days after my consultation, when I asked if I could have it issued at my local pharmacy I was told that within our NHS trust it is only available from the hospital pharmacy and they seem to make up the rules. My GP has nothing to do with my treatment unfortunately.
After a long phone call with the CNS this has been sorted, apparently there were 3 appointments issued but only 1 received by my ( no idea where 2 of them went to), and the omission of mention of blood tests was an error, by whom I don’t know, but at least I know what is happening.
Great news @JAS thanks so much for letting us know.
Let us know how you get on.
Celebrate the little wins !!
Look after yourself
To repeat myself (happens a lot these days!) that is ****** crazy. When I was diagnosed, the Prof just asked me where was most convenient to have the HC prescribed, and when I said GP that was fine. Although there was a slight hiatus when GP said they were having difficulty getting the HC. Phoned the Prof and he checked, to discover that the surgery had been trying to get 100mg HC tablets, not 500. Apparently 100mg tablets are used to treat sickle cell anaemia, and there’s not a lot of that in Aberdeen!
Do wonder if it would be worth your finding a sympathetic ear in your haematology department and asking again. Maybe they could make up a different rule!
Thank you for your lovely reply. Hopefully things will soon return to what we they used to be. I really feel for the NHS staff as they under so much pressure and do their best so it is difficult to pressure them for information at the moment. The Blood cancer society has been a marvellous help and we are lucky to have them available to help us. I appreciate all the help they give. Hope you keep as well as possible take care
Completely understand everyone’s frustrations about blood tests, telephone appointments and medication. My GP practice will only deal with issues relating to blood pressure and diabetes and my hospital team will only deal with issues relating to the cancer. If anything doesn’t quite fall into one of these categories, they are both reluctant to get involved instead of treating my health holistically and working together. I get a telephone consultation with my consultant every 3 months and it’s exactly the same experience as mentioned above, less than a minute and an indecent haste to put down the phone. My latest consultation was on Thursday and because they don’t stick to appointment times and I was in a meeting, I missed it and won’t get another one for 2 or 3 months (usually 3).
Oh @Franko I bet you had sat looking at the phone for hours and then as soon as you had to go into a meeting you miss the call, typical.
I end up taking the phone into the toilet with me !!!
After the hospital cancelled an appointment at the last moment and I was promised another appointment by letter, I waited 8 weeks then i rang the department this week and there was no apology I was just given an appointment for mid September.
Look after yourself
Hi @Franko, I’m so sorry to hear this. That must have been so frustrating for you. I was just wondering if you have a Clinical Nurse Specialist and whether you feel able to approach them, perhaps if you have any questions or concerns you were hoping to share in the missed appointment? Best wishes, Tanya.
Thanks Tanya. I’ve never really had a CNS. I was allocated one when I was first diagnosed but I only ever met her for a couple of minutes once and she showed zero interest in me and has always been uncontactable, much like the rest of my medical team.