My neph phoned me to ask me to cease posting on this forum

[Kipper]

I got a phone call a few days ago from my neph to complain regarding comments I’ve made on this forum. He didn’t say but I strongly suspect that this was sparked by my recent thread “business as usual at clinic” This was a moan I was having following a scheduled clinic visit that upon attending I discovered had been cancelled the previous day without my being informed. In fact a letter had been sent which arrived after my scheduled appointment time leading to me attending a non existent clinical appointment.

Having re read my post I regret the tone of the post as I had written in anger and frustration. I should not have done this although if you read the post it is clear that I was in considerable pain following a back injury and was very annoyed at my time being wasted on a non existent clinic appointment, still no excuse I should have taken my own advice and never posted in anger.

That said I stand by the post and particularly the comments I made later in the thread regarding the quality of customer service. Now back on point – the conversation. It was clear that my neph had read most if not all of my comments on this forum and he disagreed strongly with the “garbage” I had written, I first refused to discuss but it became clear that he would not relent so I requested individual examples which I intended to discuss point by point. He refused to do this but he spoke at great length on how good his team were and how well they compared to other units. This completely disregards and refuses to address the comments I made regarding quality of service and basic customer service principles but he was on a roll and heading into a rant so I let him continue.

As soon as I discovered the direction the conversation was heading in I had the foresight to press record on my home phone, I’m glad I did as subsequent playback of the call revealed his objection to my commenting that shortly after transplant it had taken 3 months for me to obtain vital Cyclosporin results. I hadn’t taken this in initially as I was so shocked at receiving the call. I guess I was taken off guard and my initial thought when he told me he had something very delicate to discuss was that a mistake had been made with my results and that things were not good, a point I would have expected a him to dispel at the outset. Instead I was blamed for apparent low morale within the unit, it would appear that all renal staff were aware and had read my comments, he also told me that any future patient reading my comments would have a negative view of the unit, I suspect that an encounter with the practices common under his instruction would provide this without my assistance.

I made it clear that I was not prepared to discuss but he continued unfazed, the culmination was a rant which I chose to cut off mid point as I was late back for work and I did not consider the conversation appropriate or professional. It’s not the first heated phone conversation he’s been engaged in regarding me although the previous one was intercepted by my wife during my recovery from transplant. Because my GP would not provide medication for me without written authorisation from him, he insisted that I change GP. I’ve had my GP for over 20 years and I like him immensely, he’s very competent and a really nice man. My wife absolutely declined to change GP and rightly so, my neph later dismissed the conversation and realising he’d made a mistake he played it down making references to my wife on 2 subsequent occasions at clinic visits.

So here I am faced with my nephrologist, the man in charge of my care at odds with what I consider to be my freedom of speech and right to express an opinion on an open democratic website. I’ve previously said that I have not complained because I didn’t feel that anything would be achieved and also the quality of my care may suffer, I am doubly concerned for this now. This man has complete control over my care, if my transplant fails he will decide if and when I get a replacement. I can only hope that he is able to put aside any personal dislike of me and provide the care which he is entrusted to give, we shall see.


My primary concern is that there remains a complete absence of any acceptance of personal responsibility and acknowledgement that things could be done any better for me and others. I do wonder if the time spent trawling my posts would have been better used taking an introspective view to consider the points I raise and put in place a process to prevent future recurrence. This is a forum for expressing personal views, I like others have made complaint but if you check you will see that by far the majority of my posts offer advice and encouragement. We can only discuss such things with each other, healthy people do not understand and nor do our care givers. I submit that people on this forum have benefitted from advice given by members that was not available from the medical profession, long may that opportunity remain open to us.

I’d be grateful to hear what you good people think. Is it appropriate that my nephrologist calls me and strongly request that I cease commenting on this forum. Having read through all of my posts I can see only 4 of the 128 that contain direct complaints and they each relate directly to specific incidents ranging from poor service and time wasting to lack of important information being provided and subsequent unnecessary preventable suffering. Of these 4 only 1 was a thread initiated by me, the other 3 are responding to and sympathising with other people’s experiences. The rest are all supportive or are attempting to assist the poster with information based on personal experience.

Have I the right to continue posting my views or should I be forced into silence by threats real or imagined?



Thanks for reading – kipper.

[Thumps]

Have I the right to continue posting my views

Simple answer - yes. No-one has the right to stop you from saying what you think.

I would seriously doubt that any reader would use ONLY this forum to make judgements on any individual or unit's performance or care for their patients. It's important also that patients have an opportunity to vent their frustrations to others who understand the peculiarities of chronic illness and associated care, i.e. places like this.

or should I be forced into silence by threats real or imagined?

BUT.

I would certainly advise that you MUST make your constructive criticisms and suggestions for improvement known through the proper channels, preferably by discussing with the Jersey KPA and/or your hospital PALS, as well as using this forum as a place to vent and post your more emotional responses.

It seems to me that the channels of communication between you and your neph are quite broken; in my experience the best way to improve your own situation as well as that of others at your unit is to get involved positively with the whole team who are responsible for your care (your neph is just one of them). Work with them to look at ways things can be improved. If you do not, you could easily just be written off as just someone spouting "garbage".

I know getting more involved is probably the last thing you feel like doing, but I've usually found that it really does help, if in no other way than to make you feel more empowered in your own care.

Good luck!

[Budgie]

You never know whos watching on the forums
your neph must be a Lurker !

[Doolally]

Oh my word!! I'm shocked, I really am!!

Kipper, you are a valuable member of this group, as far as I am aware from your posts, you provide very productive advice and encouragement.

I also think you have articulated your post above really well. You haven't ranted and raved about this situation, you have stated the facts and stated your opinion (to which you are entitled) but made it clear it is only your opinion. I think its good that you've posted all this on here and it's an important point that needs to be discussed.

As for the situation, I really don't know what to say. I am not sure that your nephrologist went about dealing with this in a very professional way. Perhaps a letter would have been the best choice of action to first address his issues. Then maybe a meeting to discuss the situation, giving you the chance to prepare, rather than being caught unaware by telephone at an inconvenient moment in time.

I respect you for openly saying that you may have made mistakes in the way you have written on this forum. I think it's important to try to look as objectively as you can at the situation. You have obviously read through all your posts and thought hard about this issue. You have analysed that on a rare occasion you feel you could have written your opinions a little more considerably. I am sure you will try to be more considerate in the future and I hope your nephrologist is satisfied by that (when reading this post!).

But I am concerned that your freedom to speak about your own personal experiences on this forum - something we all do as a way of managing and coping with chronic illness - appears to be being violated. If someone comes on here to 'rant and rave' about a negative experience they have had at clinic or with a doctor then I think we are all able to view this as a personal experience for that person, not as a broad statement about that doctor. This forum is for us to off-load and to seek advice, and I have found that nearly all the advice given is very constructive. To be honest I'm quite flummoxed by the whole thing, I really don't know what to say. I don't know what your rights are with regard to freedom of speech, or what your nephrologist's rights are with regard to privacy. I don't know what is classed as acceptable in the society we live in. I am really intrigued to see what others say and to see where this leads. Please keep us posted.

Basically, I think if your nephrologist had presented this issue to you as something you both need to discuss together, in a meeting, perhaps with other members of your renal team and with your wife, to come to an agreement about how you express your concerns on this forum from now on, and if he had been willing to discuss any issues you have with your care so that you could come to a mutual understanding of working together to make improvements to your care and the care of others, I don't see a problem with this. This would have been constructive and both parties would benefit. Maybe there is still a chance this could happen, I don't know, though I understand that will be very difficult for you now.

I know this must be very distressing for you. Being in the hands of medical staff, having so much independence taken away from us, the vulnerability of chronic illness and the unknown, is distressing enough. I'm sorry you are having to go through this and hope that something good comes out of all this in the long run.

Love n hugs xx

[eliznew412]

Hi Keith,

Seriously take my posting reply to him and tell him I would like to know whether he thinks we are unthinking numpsies - because if he does think we need so much nannying. Any idiot knows that every patient has a different experience even within the same renal unit and the same consultant. The only effect negative posting would have on me is to wonder where the breakdown in communication happened and what was causing it - it wouldn't necessarily make me assume you had a bad consultant. Has he asked himsef where they may have gone wrong? - they are human, they do make mistatkes - the scariest thing is when a consultant cant' admit that to you - course sometimes they don't for legal reasons - but if there are ongoing problems there needs to be acknowledgement - but as far as I am concened I could experience good treatment from your team and not encounter the same problems as you have but your experience is valid. The worst thing a consultant can do is cut an upset patient off from a largely supportive intelligent chat room that is aware that experience is intensely inidividual and intensely valid. If you find it helpful Keith tell him to stop 'thinking too much and worrying!'.
ps the x was for you not the consultant te he. Honestly sometimes these consultants treat their renal units in the same way as they would re loyalty to a football club. If reputation is so fragile it can't take some personal rants and a sense of some external validation they must modernise their view of public relations as well as their relationships with patients.
x

[Doolally]

Sorry, me again! I've just taken a bit of time to read through some of your posts. I read all your posts on the thread 'business as usual at clinic'. I honestly can't see anything wrong with what you have said in this thread:

1) You are only stating your opinion and venting your frustration. If the unit had listened to your concerns and answered your questions then you wouldn't have needed to turn to us for support and advice.

2) I don't know which unit you are at, or who your doctor or nurse is. You may have mentioned it before, but you don't mention names every time you post so I actually don't have a clue where you are. You could be in Australia for all I know! You are obviously not finger-pointing and name-shaming.

3) You have made it clear you are speaking your opinions only.

4) You are giving the facts as you see them. You are entitled to do this. If someone doesn't like reading 'facts' about themselves then they need to be the one to change, rather than expecting someone else not to voice the facts any more.

5) You (as far as I can tell) aren't making up lies to defamate characters. That would be wrong. For example Frankie Boyle recently defamated Katie Price's disabled son by implying he raped his mother. That is defamation and is not acceptable. All you are doing is voicing your genuine and real concerns about the reality of a situation which is personally effecting you.

6) You are trying to be positive in an obviously distressing situation. You say things like "Don't misunderstand me, the unit care about their patients, they are just hobbled by an archaic system..." and "The thing is (and I'm genuinely not knocking the health service here) they exist in a vacuum, many have never worked in the private sector and have no knowledge of common business practices." You are actually making excuses for the negative treatment you are getting that takes the blame away from individuals. There is nothing defamatory or unreasonable in what you say and you are clearly trying to be objective in something in which you are subjectively involved.

I just want to add that I am under the care of an excellent renal unit. I do have issues with my consultant which I need to work through (don't we all at one time or other!), but overall, the care is very professional and personal. I don't think I would have found myself to be in some of the situations you have been in, such as the situation discussed in 'business as usual at clinic'. Because of this, I think it is fair that you raise these issues, knowing from personal experience that it is possible for a unit to achieve a better standard of care than this. We should all be open to improvement in our workplace, our relationships, our personal attitude in life, etc. and we should all be open to constructive criticism, however difficult this might be.

... there is still an issue that doctors face new challenges these days with patients being far more informed (but not necessarily better of course!) about health issues through the internet and the relatively open discussions that take place on forums like these. So those of them who haven't adapted to the reality need to do so and manage their patients appropriately and, maybe in some cases, pre-emptively. Obviously the better and more confident a doctor is in his/her abilities then the better they will also be at dealing with these kind of things.

I agree with Keith (above) that it would serve a unit well to adjust their care and methods accordingly when it comes to the fact that patients are now encouraged to become their own health manager, to research, to learn and to share experiences of their illness and treatment in order to become better informed about their own care. I'm sure, in the past, patients were much more at the mercy of medical staff than they are now; now patients want to know all the options and make informed decisions about their own health and body, to regain some of the control that has been lost. I can imagine it could be hard for some medical staff to accept this.

It is very hard for anyone to take criticism, and I think your nephrologist was 'reacting' to what effected him and his staff negatively. That isn't to say that his view of what is right and what is wrong is actually correct. He may even be able to go away and analyse the situation himself, as you have been doing, and look in retrospect about how he could have handled it differently and how you could all move forward more productively. If he is able to do this then there is hope that the two of you (and others) will be able to work through this fruitfully as I mentioned in my previous post.

I hope you don't mind me saying so much. I am having a fight to make myself heard to Social Services at the moment and feel strongly the frustration, not just for myself, but for all the "vulnerable and weak" in society who have to fight so hard to make their voice heard. This issue has struck a chord in me that was already playing very loudly!!

[Helen Rambaut]

The renal world is clearly a small world. I am writing this in the full knowledge that the neph is reading this. Until I stumbled across this forum I knew no one else who was on dialysis and going through what I was going through. Its value lies in the support patients & carers give to each other at whatever stage they are in. It gives us an important outlet to vent frustrations as well as help us understand that we are not alone. If you have never been a patient yourself perhaps you have never experienced the kind of problems we encounter.

Unless you are a sufferer of kidney disease, however well meaning you may be, you can not know how it feels. We can only describe it to you. We share a common bond which is difficult even for our close relatives & friends to understand. On this forum we can be connected to others like ourselves. No one can see just how sick some of us are. We can connect without leaving our house. It is often assumed that social networks are shallow but the KPG has introduced me to people I would not have had the opportunity to meet & may never meet.

To suggest a patient ceases to post on the KPG, in my opinion, seeks to break up an individual's personal relationships & associations. That seems to be an infringement of personal liberty.

[MandyV]

My first reaction (before I read the detailed content) was great; at least staff are reading the forum and trying to get a patient’s perspective! I have actively encouraged both staff and other patients to read and get involved in the forum – because, as Helen so rightly says, it is an unparalleled resource for all those who use it (whether actively or just reading it).

However it was distressing to hear that the tenor of the conversation was not ‘could we address some of the issues you have identified’ but stop posting. I always assume that anyone could read my postings and therefore would not post anything that I would not say directly to anyone (in an appropriate setting of course)! I do agree about the not posting in anger (also something I watch for if I get an annoying email, too easy to hit back hard, rather than diffuse the situation)!

It seems to me that you have three options:

1. Make an appointment to see him and discuss with him (making it clear that you will be recording the meeting, as well as taking a friend/relative with you for support if you wish) and try and diffuse the situation by talking constructively about your postings vis a vis him or the department (other, personal things are none of his business).

I would also make clear your concern that he needs to be able to put this to bed because he is your main care giver and you need to be able to feel that he will behave with the utmost integrity towards you when he is operating in his professional capacity. I would also be open to reasonable compromise i.e. if he asks that you address an issue with the department before posting about it, and makes it possible and comfortable to do that ….

2. Make a formal complaint about him, in the first instance to the appropriate line management and then upwards if appropriate. I would mention the phone call etc and make it clear that your main purpose in complaining is to ensure that you are not ‘punished’ in any way. This would be the obvious follow up to 1 if that did not work.

3. Stop posting and hope that he feels that you are suitably contrite! I certainly would not advocate this without some ‘clear the air meeting’ first and honestly don’t see why you should have to.

Good luck and keep true to yourself in whatever way you choose to act!

[sanela]

I found this forum through another support group and I thank my lucky stars because most of the things I know about kidney disease, dialysis and transplants I have learned from that support group and this forum. My doctors, as wonderful and caring as they are, could never have given me all the knowledge and answers to my questions that I got from all of you.
It never really ocured to me that our doctors or nurses might be reading our forums but I can only think that is a good thing, as someone has already said, they can read about the things we are concerned about and be proactive about it. Sometimes we will not tell our doctors all the little things that bother us preferring instead to discuss on the forum with people like us who might have had similar symptoms or concerns and can reassure us or urge us to get it checked pronto.
With regards to your consultant, it seems he responded in anger too, never a good way of discussing issues that touch a nerve, raw or otherwise. He might already have regrets about making the phone call. We should all remember that sometimes what we mean to say on a forum does not always come across as such when we write it down.
So please, do not stop posting here, your knowledge and experience is invaluable. Do try and talk to your doctor about the issues that affect you. Who knows, this might be the best thing that has happened for both of you.

Sanela

[Kipper]

My neph has requested a meeting this coming Thursday, I am hopeful that it will prove productive for both parties.‏

Regards Kipper.

[Fabrette]

Hi Kipper,

When I post on here, like you, I accept that its a public forum and don't say anything I wouldn't say to someone in person. We are entitled to voice our opinions in this country and shouldn't feel bullied into keeping quiet about poor practices just because its not what these people want to hear. Anyone reading articles in the press can read things said about them that they don't like, its not confined to forums. And anyway, why should we have to put up with being treated poorly? Like you said, it would never happen in the private industry sector. But that's where they have us- until we get choice of who we can go to for our healthcare when it comes to specialist medical care we will always be made to feel that we have to put up and shut up.

I'm a really patient person but once I have bad service I'm lost as a customer for life. I don't take any prisoners. Its a shame but there you have it. I will engage with anyone as long as they treat me with respect and dignity. What I won't do is be pushed around and bullied by the NHS service just because they insist that 'they know best'.

I hope your meeting goes well. I strongly suggest you take an independent witness with you just in case.

[Kipper]

As you will know if you’ve been following this thread, I was asked to attend a meeting with my neph and his renal unit’s sister this morning at 11.30am. I accepted the invite viewing it as an opportunity to discuss the problems I’ve experienced with cancelled appointments at limited or no notice and various other things. I arranged for the time off work and my wife rearranged her schedule and took the morning off to accompany me.

I received a phone call from the unit’s sister 45 minutes before the meeting was due to take place advising that my neph couldn’t make the meeting, no explanation was given as to why this was. I explained that my wife had taken the morning off to attend and that I had made arrangements for time off also. She apologised and offered to meet us both in his place, I thanked her but said that I had no issues with her and as she had no power to enforce the improvements I planned to suggest, that there was no point in meeting.

While it’s perfectly possible that an emergency had occurred this was not conveyed to me, my neph did not call me personally so I couldn’t ask him. I now feel that there is little value in attending any future meeting as neither I nor my wife can obtain time off work very easily and my employer has already been more than reasonable in allowing me to attend out patient appointments. My wife incidentally is fuming but then she hasn’t had the time to get used to the unique service provided by my neph.

To reiterate, I was asked to attend a meeting to discuss scheduled appointments being cancelled with little or no notice. The meeting was cancelled with 45 minutes notice and no explanation beyond my neph being unavailable to attend was given, you couldn’t make it up.

I’d just like to thank those of you who have contacted me offline to express views that you would prefer not to air publicly, interestingly your number exceeds the number of public responses. I wanted to make this information available to you all in the first instance because I had not seen this topic mentioned before on this forum. Of course we can have no expectation of privacy on a public forum, a nickname is no disguise for an individual who gives specific details of his/her condition, especially if said individual frequently signs off using their real name. I just felt that there was value in discussing something that whilst obvious was perhaps so obvious it had been overlooked.

This forum is a valuable tool in enabling us to communicate with people in our unique situation. Personally I have found it to be of enormous help, I have discovered that much of what I’ve been through is common and I mean my personal experience of the illness, not the people who care for us. It’s much better than a local KPA ( good though they are ) because it’s reach is much wider, therefore the breadth of experience much greater. My only concern is that my personal experiences detailed in this thread will serve to make some of you cautious about what you say publicly in future, I sincerely hope that this is not so. This forum exists for a reason, there is a need for it, it enables existing renal patients to communicate their concerns and experiences and welcomes new people who naturally wish to understand their recently diagnosed condition.

Best wishes – Keith.

[eliznew412]

I wonder if any nephrologist or consultant is aware just how brave you feel you have to be in order to make any complaint, even a minor comment, particularly as an in-patient. Sometimes stress can build up and up over time and the only place you have to find let some feelings out is on a chat board. It may not always be the best thing to do but if you are a patient without anyone else either available or willing to hear who the hell are we supposed to talk to? There is also the point that it is the only replacement for a renal patient for the 'chat over the fence' on a topic which is boring to Joe public but only too relevant to you as a patient. Consultants are paid to save lives and don't have much time for the psychological/emotional stuff; we can't all queue to see the renal unit psychologist (if they've got one - they are usually part-time and a luxury item in a renal unit). The typical NHS style of complaint handling can often be strongly coloured by the possibilty of any legal action and there are very neutral careful responses. When I was in shock I did put in a complaint but the good old NHS consultant response was 'sorry the system didn't work for you..' but then immediately rambling on quoting their mission statement of excellence etc. It makes you feel diminutised, odd, unique - to blambe and is worded in such a way to indicate that. I was made to feel like the only one out of step, unusual and maybe a bit of a madam. Having a nice chat to resolve an issue with a consultant requires a lot of courage, you feel so vulnerable and you realise that you are facing a well paid professional with colleagues and a more secure job situation that you do.

I realise not all consultants make you feel like that. I like the one I've got now and I reckon they generally seem to mean well. Its just I seem to have bad luck with them when I've hit serious decisons/ stages of illness. So to any consultant reading this I'd like to put it to them where else was I supposed to get a sense of support? They ought to do some serious role swap at least a couple of times during training and every 5 years after so they get some slight idea of what its like on the other side of their desk and reminded that it's different without colleagues. So it may seem like blurted out, badly worded rubbish to them (I mean my postings ) when we get emtionally upset but we aren't writing business letters just finding some sense of support and sharing - so that I can do this instead of this and thats a results doc.

[eliznew412]

Ah Keith, there is also Del Boy's little quote 'He who dares....' and like I said as far as this chat board is concerned for me is a result. I would encourage patients to say how they really feel. I went for years to appointments and didnt' dare say anything and result wasn't good.

[Doolally]

So sorry Kipper.

This is a very interesting thread, its making me think differently about my own health care and stuff like that. I feel very sad for what you are going through, it's tough when you're just trying to make things better. But it takes cooperation on both sides. Keep posting. Keep talking....