It's not very often I post but still pop on the forum now and then but just had to write after seeing people post about getting a referral to an Mpn specialist and how to go about it. All I can say is good luck to you if my experience is anything to go on. I like many on here had been having regular phone consultations since Covid but the last 2/3 consultations were face to face because of frequent infections and low hgb. On my recent consultation I was introduced to a lady by the Haemo I had never seen nor actually took any notice of because it was a swelting hot day, around 36 degrees here. (Couldn't wait to get out and go home) I have since found out that i'm to now go back to phone consultations with the lady I 'was' introduced to that day who turns out to be a Pharmacist who was shadowing the Heaemo because she as an 'interest' in Mpn's! Not even a call off the Haemotology nurse. Needless to say when I realised I phoned the dept yesterday and asked for a referral because of that and also the travelling becoming to much for me. Interesting the Haemo's nurse phoned this morning because she knew I was going to complain to PALs. She was trying to tell me about the Pharmacists interest in Mpn's but I abrubtly stopped her and sarcastically asked her when will it become the norm before they actually are getting health care assistants or even the cleaners to phone us to discuss our individual Mpns but I was told by her I had to understand the Nhs was evolving, what into God only knows. Needless to say, the conversation didn' t last when she said she had to 'ask' the Haemo 'if' he would refer on after I refused to discuss my blood results and condition with the pharmacist. I told her my body, my choice! Will be interesting in around 6 weeks time when bloods and medication time come around again! Keep taking the tablets and smiling.🙂🙂🙂,tina.
Energy costs and inflation going through the ro... - MPN Voice
Energy costs and inflation going through the roof and now the NHS finally gone to pot!!
I was having tests for et but seems that because I don't have any of thr genes it'd highly unlikely I have it but my follow up was with the pharmacist. She was nice but I really couldn't ask any questions and each time I did she said I would have to ask the haematologist at my next appointment. She said onky a bmb will confirm this now. But I haven't had one or been offered one again as I asked for sedation. She said they don't have any anesthetist at our hospital.
I then had an appointment through for 31st August but I rang about some blood results which the Receptionist wouldn't give me over the phone before hand (i didnt want to discuss the results. I just wanted the numbers). Next thing my face to face appointment was cancelled and I had an appointment bought foward. I had a telephone consultation. I was given my results over the phone and discharged at the same time. I have no idea of who I spoke to. Could have been the cleaner for what I know but I asked for all my copies of my bloods to be sent to me but they have not still.
I understand your frustration too. Pharmacists are needed in haematology but only if you are taking meds and I am not. I really dont understand this.
Ha,ha, like you comment about "could have been the cleaner for what I know", I think the Nhs as a whole is not fit for purpose and never will be again, its not just hospital consultations, people can't access G.p appointments and I won't talk about the waiting lists!!
A little harsh but honestly you don't know who you are talking to do you. You cant see their lanyard. You have no idea what you are discussing with whom. And whether they are assistants or not. And you have no way of proving anything. Or actually seeing any of your results with the naked eye. I lack faith and trust now.
I was refered to Proff Harrison by my Gp. At my request .Perhaps try your surgery.?
Good luck and don't give up.
Thanks Mostew but think i'll wait to see what happens after the 'heated discussion' with th Haemo nurse this morning and when my next appointment would have been in around 6 weeks time. To be Frank I don't have a lot of faith or time for our system and the medical establiment as a whole. Tico.
In my experience, Tico, the haemo nurses are the best people to talk to. They are knowledgeable and willing to spend time with you. At least, mine are.
Well my present hospital must be on a cost cutting exercise because I was told I was being afforded the luxury of a Pharmacist who "as a keen interest in Mpn's" who as been 'shadowing' the Haematologist! Tina.
Pharmacists are often more knowledgeable than GPs and have the time to talk to you, but how much they know about rare diseases I wouldn't like to say. I would see how it goes. I'm seeing a nurse in three weeks and that could be better than seeing a GP who has little interest in my conditions (not for MDS/MPN this time but for thyroid, which I think may be more serious a matter).
Hi Tina, lovely to see you on the forum again.
I wrote an email to my local haematologist requesting a referral to Guys. My punch line (in case I needed one) was ‘As MPNs are rare diseases it was in my best interest to have the valued input of an MPN Specialist going forward in my care.’ I was half expecting a battle, but I got referred, and it was well worth it.
I don’t mind tele-consultations, but that’s only because I’m stable. With your history of TIAs and infections I think you would be better served by face to face appointments.
Are you still on the high dose of hydrea? It could be affecting your neutrophils if you’re getting constant infections.
Morning again Mary, lol, within 2 hours yesterday morning of us messaging each other the Haemo's nurse phoned while I was cooking my breakfast (bacon on toast,lol.) I was expecting it after phoning the day before and requesting a referral to my local hospital. I've had too many problems in the last year, e.g, having to chase my medication up because 'Haemo forgot to send it through'. Also virtually impossible to get through to someone at the department unless its a clinic day and un-returned phone calls regarding medication for nearly a week. I take 3 Hydrea a day, 7 days a week, my choice, I told Haemo I was no longer prepared to take the 4 a day which i'd been on for years but I should be thankful bearing in mind my highest dose at one time was 5 a day. So glad you got the referral to Guy's, did you manage to change Gp? I know your husband did but you were waiting to see how it went? Tina.xx
Hello Tina,
I too rarely post now. I just wanted to say hello.
Judy 💐😘😘
Assertive patients receive higher quality care. Passive patients do not. Pharmacists can do an excellent job answering questions about medications. Monitoring a patient's MPN overall treatment needs is well outside their scope of practice. This needs to be done my a hematologist or advanced practice nurse or physicians assistant (practitioners qualified to prescribe). Ideally, the provider needs to be a MPN Specialist.
Wishing you success is getting referred to an appropriate provider.
I agree with 'Assertive patients receive a higher qualitity of care.' Passive patients do not', unfortunately in the UK at the moment the Nhs is virtually on its knees which will only get worse heading into the winter, we are also in the midst of an energy and cost of living crisis where at the moment our inflation rate is currenting at 10-1 but now some economists predicting it to hit up to 18-6 by next year, the highest in Europe, our next Prime Minister in 2 weeks time will have to make some difficult decisions and that normally means more 'hidden cuts to the Nhs'!
NHS is almost privatised , the running down has been organised since 1979 beeing killed off bit by bit until we have USA type system . God help the poor
If you read in the Times newspaper this morning its about to get worse. It says hospital bosses are warning they would face "impossible choices" under the next expected Prime Minister , Liz Truss, plans are being drawn up to divert £10bn a year from the NHS into social care, which would"slam the brakes" on efforts to tackle waiting lists in the national health service. God only knows just how much worse it can get! Tina.
Rather than having a go at front line staff sometimes it’s management who need to know about our frustration, particularly the chief exec, as it’s they who decide how departments are run and resources are spread.
On the rare occasion I’ve needed to raise an issue but, feeling too incensed to deal with it well, I’ve found PALs to be a sensible go between.
At my local hospital I was once encouraged by a haematology CNS to take an issue to PALs (actually shown the way to their door) because she shared my frustration and was glad of some patient back up.
Yes it is chief exec's who decide where resources and finance's go but it is the consultants who decide who they see face to face and considering I still have issues with low Hgb which is not caused by a lack of iron and have had several infections this year, I would expect to have at least a conversation with a consultant, whether face to face or by phonecall. Tina.
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