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Mazcd
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Dear Maz. I accept much of your opinions regarding advice etc. But I must question the fact that not all of us on MPN do feel positive and sometimes look for support. As we all know, not all heamos. Are experts in MPNs as are GPs and it helps sometimes to be able to offload our worries. There are people who are suffering with the effects of fatigue and lack of support from other agencies and I often feel inadequate because I cannot be as positive as other members. An MPN is a complicated condition and we allreact differently. It would be comforting if, when someone writes to say how difficult they are finding life it is treated with little understanding. Can anyone stay positive always? I'm very happy for those who are coping but there are possibly many who are not. It would be good if it was possible to just express how wretched we are feeling without being made to feel guilty because we don't fit in with the majority. Maybe they are the ones who don't post. We would all like to feel hopeful and positive but sometimes it's not possible. There must be many who feel the same. I hope you will take this into consideration. All good wishes. mary. Mary1stSeptember
I feel sure that Maz is not saying that we cannot come here for support when we are down. That is one of the main functions of this forum to support each other. I believe we are just being asked not to name names even if we are unhappy about professional advice we have received. We have all come across situations where the professional we are seeing has not fully understood our conditions and here is a safe place for support in those circumstances without any need to mention names or places
It is certainly a good thing to provide references for articles we have read and wish to bring up for discussion as that means we can all give our interpretation of any particular article having read it ourselves.
As I have said, I really appreciate Maz’s input on this forum and her close association with “certain well known professor” (😂) to keep us all supporting each other in a safe environment. I have come across Facebook forums where an attack on individuals is all too common and that is not what this forum is about
So, Mary, feel free to come here when you are down and we will do our level best to lift you up
Hi Mary, these are not my opinions, they are the guidelines as set out by HealthUnlocked, I have copied them and inserted that we no longer want any names of consultants/doctors/hospitals being used. This forum is very highly respected in the medical community and I know that many haematologists and nurses recommend this forum to their patients, as they themselves do read the posts and replies, so they know that it is monitored and that the information is safe and correct, and is corrected where necessary. We do not want to have any complaints made to MPN Voice or even to HealthUnlocked, this forum has always been a free to use resource, we did not have to pay to join to have MPN Voice on here, and it would be such a great loss to so many people if complaints were made and we were removed from HealthUnlocked.
Anyone can express how wretched, fed up, ill etc they feel, that is the whole point of this forum, somewhere you can get support and advice, what you can't do is say you don't like the advice from Dr Bloggs at Bloggsville Hospital, just say 'I don't like the advice from my doctor or I don't agree with my doctor/nurse'. You can also say how happy you are with the advice and treatment you receive at your hospital, just don't name it.
Hi Maz. Thanks for your reply. In no way was I questioning your post regarding guidelines. I totally agree with what you said. My possibly unrelated comments were regarding MPNs writing to have a moan or say how they feel. As a result of your post in December I have refrained from contacting MPN. You do brilliant job and we are all grateful for all your hard work. I am struggling enormously with many symptoms - bloods are fine! - so why do I feel so awful. Can't walk, have to keep going to bed, head and body pain, sweats, giddiness. I also have CFS as you know and there are many similarities in symptoms for both ET and CFS but that is something I need investigate further (when the brain clears). I do try to exercise but it's almost impossible and that makes me feel a f allure when so many people are living near normal lives. Where is Sherlock when you need him. All good wishes.
Mary, you and anyone else can moan as much as they like about their symptoms etc, that is what this forum is for, to help people feel better, so please do not stop posting about how you feel, I am sorry that you felt you couldn’t get in touch, it was not my intention to make you feel isolated. Maz
Having only joined this forum in the latter part of last year, I was unaware we were not meant to mention the name of hospitals where we are treated. I have done so on a couple of occasions. I think its useful and of interest to others.
There have been a few occasions when I have had to delete names of hospitals and consultants as they have had negative comments made against them, so it is best if no names are mentioned at all, for good or bad comments, if you read my reply to Mary, above, you will see why we would prefer this. Maz
Like MCW i’m struggling with the no naming clinician / hospital rule. I can’t actually recall anyone being derogatory about a named practitioner in this particular Forum.
MPNs are orphan diseases and specialist clinicians can be thin on the ground. Posters often give examples of very poor and unsatisfactory practice from local clinicians / institutions - which are not named - and want to know where to go to get more specialist advice. I don’t think that in response it is unreasonable to highlight the names of clinicians and institutions which are known for best practice. And where appropriate give examples of that advice and practice.
The fact that I am under the care of a world leading MPN authority - the Prof who shall not be named - in a hospital department that is recognised as being a centre of excellence in this field, may lend some credibility and reassurance to some of my posts.
Information exchange will simply be driven ‘underground’ into endless private message exchanges which then won’t benefit the wider community.
By all means ban negative and derogatory comments about named practitioners and practices. But don’t ban us naming the (fairly) rare excellent MPN clinicians and their teams.
I think it would diminish the value and quality of support provided by this Forum if we had to censor information in this way.
Maz - as a rider to my post above - I realise it’s not you issuing the no name edict. And I recognise that there might be issues especially in other more general Forums.
It is a difficult line to tread, I agree that naming good hospitals etc is good for people to know where they can go for more specialist care for MPNs, but as I have said below, it is all a matter of perspective and expectations on what one person feels is good and bad. I am always happy to recommend a consultant or hospital to anyone who asks, and I will always ask the person to contact me either by email or by private message as I have to know where they are being seen etc, and I always recommend before changing hospitals that they talk to their consultant/doctor etc, as this can sometimes solve issues. So it would be better if people do want to know where they can go if they ask me, or ask another member but in a private message only. Maz
I would just like to reassure you all that by drawing your attention to the guidelines I am making sure that we do not break any rules and can continue to have our forum here on HealthUnlocked, as I have said to Mary above, HealthUnlocked is free to join, we do not pay anything to have this great resource, but we have to adhere to THEIR guidelines or we will be removed. There are many consultants and nurses etc who read these posts because they trust this forum as they know it is monitored and information is correct or is corrected. And may patients also join and read the posts, because they know they can trust it.
I would also like to remind you all, that any 'open' posts and all the replies on this forum are available on any internet search engine, so all this information is available to anyone.
You can say good and bad about your treatment/hospital/nurse etc, just don't give their names, just say 'my hospital' etc.
We all have different perspectives on what is good and bad, what we like and don't like, I don't like ordinary tea, I only like one particular blend, and that shouldn't influence other people on what tea they should drink, it is just an opinion, and no, I won't say what tea it is.
I am sorry if I have alarmed anyone, that was not my intention, I just want you all to be aware that posts are monitored and I will, if necessary, edit them.
one thing that i am very wary about and hold my tongue is when someone may have the same symptoms as myself or asking about hu and should a patient get something done i am of the opinion every consultant has a different way of working and although symptoms sound the same it could be something totally different although having ET since1994 does not qualify me to give out advice and then after someone i have given advice to turns and says but you said that is why i shy away from giving advice except it is better to go and see your Gp
also e-mail has been passed onto the CMO of Scotland waiting a reply
I am a blow in here and I am not very active in terms of posting on the forum, so I thought perhaps I should hold my tongue. But I am glad to get guidance and have clarity on what the boundaries are. I think Maz has handled this beautifully, as she can see the bigger picture snd seeks to protect each of us, the forum and it's credibility with the medical profession. It makes sense not to name the docs and hospitals, I have just in passing because many posters here ask for information on hospitals near them. However when it comes to praise or ire I think we get into a thorny arena. I have so appreciated the support here and Maz has from the outset made herself available for any questions, issues or concerns we may have. This is the first forum I ever joined and it is wonderful both when we are struggling or thriving and I want to thank Maz and all here for getting me through the past 2 years. I am happy to know the guidelines so I can contribute in ways that make that possible for everyone.
Ok, taking into account the responses to the 'no names' rule, I can see the point that being able to name a good hospital and clinician does have its benefits to other people, so how about you all continue to name hospitals/consultants where you feel you have had very good care and advice, BUT, everyone must bear in mind that we all have different opinions and perspectives on what is good and bad treatment, so what one person says is good, another will find something bad about it, what I don't want to happen is that someone may transfer their care and find they still don't like the hospital/consultant/advice etc, and put the blame on this forum or the member who thinks a hospital is great. Whatever advice is given on this site is done with all good intentions, but we all have different perspectives on good and bad treatment. Maz
that is what i feel Maz you know me i have been dealing with et since 1994 but i am wary about replying to post for saying i should not about either tests getting done patients getting put on hu straight away as every case of et is different it is confirmed dad has pv he has just had his last venesection Tuesday he is on hu and allupronil we have a firm favourite in Jean she is the best by my mum and dad and we all think Dr Teh is great
lots of love Nicki
ps all the Archibald family will now be at the Edinburgh forum me on my stand mum and dad in the crowd
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