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

[Pam]

Hi Kipper,
I am sorry for all of this! Seems that it's not enough we have to deal with our illness, but also with people who may be less than professional--those who are put in charge of our care. You stated that "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."
Kipper, if he does not provide the proper care for you it seems to me like that would be a violation of his profession and your patient rights! Can a doctor really do this? I do not know how it is in the UK, but a doctor who would attempt something like that over here in the US could face charges. Transplant teams co-ordinate with the doctors and it is never the doctor's decision alone as to whether a patient gets an organ. To discriminate against you because he personally doesn't like you would be unethical and certainly against the law.
You have every right to post on this or any other forum! It seems to me your neph is trying to bully you. Where does he get off telling you what you can and cannot say? Sometimes doctors assume they are more important than they really are. They are not God even though many of them have that view of themselves.
Keep posting--we need your voice!
Pam

[amanda in CA]

What a sensitive little soul your consultant is. "I'm going to stamp my feet, because I'm having a little tantrum". Would have thought that a more constructive use of his time would be to examine what you see as wrong at the Unit and how things can be improved. You can bet your life other people feel the same way, but probably have no outlet through which to voice their frustrations. You have enough to deal with, without having to consider having to have this sort of stressor.

[geduramah]

Im appauled that your neph has contacted you regarding posts on this forum! I could imagine that if you had named and shamed individuals then yes a phone call may have been in order. However as we do have this little thing called the human rights Act which includes the freedom of expression (but the the things you expressed were not of national security issues etc LOL), freedom of assembly, and the right to privacy. If you want to write on here do it!
Some people do not feel comfortable complaining nor confrontation. The very fact that you are unable to bring your problems to your neph speaks volumes and maybe they should have realised this when reading the posts and perhaps looked at their own practices.
I am fortunate to have a great renal team, yeah they mess up sometimes and get on my whick but no one is perfect. I have come to this forum on serveral occasions wityh concerns over my neph team and quite rightly so, because with the help of this forum I have been able to raise issues with the team and improve my relationship with them.
I think that I speak for everyone this forum that we all have the utmost respect for our docs and nurses. They can discuss with eachother at work their issues but us renal patients have this forum where we can vent when our friends/carers/partners just arent enough.

[Kipper]

I just wanted to update on this story as after a protracted process I have finally reached resolution. Following the cancelled appointment I felt that my neph had no interest in discussing the problems I’d had and that any future dealing with him would be pointless, in essence I didn’t feel that he could continue to treat me in a fair and unprejudicial way. I cancelled my scheduled appointment for bloods and clinic which was due in early May. Following this cancellation I received an e mail from the head of nursing and ambulatory care on Feb 22nd this year. Head of nursing said she’d been copied into the stream of e mails between myself and the renal unit sister. She claimed to have no knowledge of what the problem was but offered to meet me to discuss.

I responded by comprehensively explaining what my issues were, including the 2 phone calls where my neph had shouted and ranted at my wife and myself. I also explained that as my neph had said I was responsible for poor morale amongst his staff I wanted an assurance that I would be treated fairly and without prejudice. I received no response from the head of nursing, not even an acknowledgement. 5 weeks after my response to head of nursing I wrote to my GP requesting that I be transferred to a UK renal unit for my ongoing care as I felt my relationship with my neph had degraded to the point where it was beyond repair. He promptly responded saying he was sympathetic with my situation but was unable to make the referral, only my consultant could refer me to a UK unit – catch 22. I waited a further 3 weeks in case the nursing head was going to respond and 2 months after my e mail to her I wrote to the hospital managing director explaining the problems I’d had, I requested his assistance in relocating me to a UK renal unit. I said that I would not attend future appointments with my neph and that effectively I was now without a consultant. I made it clear that I would not permit my neph to treat me and that if my transplant failed I would refuse all treatment except palliative care unless transferred to a UK unit.

I sent the letter to the hospital MD by registered post and he received it the following day on April 21st. As my cancelled clinic appointment was due in early May I was now becoming desperate as I knew that I needed to be monitored to ensure that my kidney was OK and that my meds were at optimum level. Having heard nothing back from the hospital MD in 3 weeks I contacted my local newspaper. They interviewed me and contacted my local health dept for comment, health responded to the local paper and the journalist who interviewed my called to say that I would receive a letter from the health dept any day. I received a letter from the hospital managing director on June 7th, it was dated May 31st but the postmark indicated it had been posted on June 6th, the previous day. The hospital MD said that he’d taken some time to review my case and had discussed the issues I raised with various members of hospital staff. He said that he’d asked my neph to write to Guys hospital requesting that they take over my care providing I paid all travel related expenses. I advised the journalist that I had received a response and was now waiting to hear if Guys would take over my care, I was asked to let the newspaper know when I received a response as this might dramatically change the story.

Having heard nothing back in nearly 3 weeks I was very concerned that my condition might have deteriorated. I made an appointment with my GP for him to take bloods to give some indication of my health. Coincidentally my GP had written to me asking me to come in for bloods, I received his letter later that day. I attended my GP appointment and he phoned the hospital testing lab and spoke to the head of the lab. He asked if the full range of bloods that would normally be taken at clinic could be tested and was assured that they could. My GP said that he would be happy to take bloods on a regular basis until I was under the care of a UK unit – brilliant bloke my GP, I’d have been lost without him as he has been a constant support throughout this nightmare. My GP called back last Friday 17th June, just 4 days after taking the bloods. Results were excellent, creatnine 91 and all other key indicators within normal range. How does he get results in 4 days and it takes my neph 3 months? He also said he’d met with my neph to discuss my case and had been told I’d been accepted by Guys, I could expect confirmation by post in due course. I contacted the journalist as they had been waiting for an outcome before proceeding, she responded saying that as I had got the outcome I’d hoped for it would be best not to print the story.

I can’t tell you how relieved I am, this has been an incredibly stressful time for me, I’ve laid awake at night thinking about it, I’ve argued with my wife over trivia, it’s fair to say this has ruled my life for the past 4 months, I’ve thought about little else. The thing I can’t understand is the absolute lack of urgency from both the head of nursing and the hospital MD. My communications were completely ignored and I’m confident that had the local paper not got involved this would not have progressed at all, I'm very grateful for their intervention. I feel that they would have left me in limbo without a consultant, possibly thinking that I would have no choice but to accept local care if things went wrong. I made it absolutely clear on my e mail to head of nursing and my letter to the MD that I have no issue with any of the renal staff other than my consultant, I also insisted that if the newspaper were to print my story that this be made clear. There are notices all over the hospital saying “we have the right to be safe at work, physical or verbal abuse against staff will not be tolerated” it would seem this does not apply in reverse.

I am now waiting for that letter confirming that Guys have taken over my care and I hope that shortly afterwards a clinic appointment will follow. I will need to take a day off work to attend Guys clinic as I’ll need to catch the red eye flight at 0700 to make clinic. I know from experience that I won’t get back til around 6pm so it’s a long day. It will also be expensive costing between £150 - £200 per clinic appointment factoring in flights and transfers but I’m happy to pay it. I just hope that my kidney continues to function and that it’s many years before I need dialysis again, how I’ll deal with that without local support is another matter.

In closing I don’t regret anything I’ve done, I strongly believe that I have the right to express myself on this site and was prepared to refuse all treatment and face the inevitable consequences to defend that right. Providing the moderators permit I will continue to post if I feel that I have anything of value to contribute. Thank you all for your support, think carefully before responding – your neph might be watching!

[Doolally]

Thank you for filling us in. I've been wondering how things have been going.

Firstly, what wonderful news about your kidney function, that's excellent, and must be such a relief after the past few months of not knowing!!

I'm so sorry for the stress and anxiety of the past few months though. It must've been awful, still is really. I am so shocked by the un-professionalism of your neph. I had an altercation with my neph at my last appointment. I'm cross with him for not picking up on certain health issues and leaving me really, really ill for nearly a year, and ended up in an argument with him. I had my bloods done at the unit, and a couple of weeks later through my GP, and both lots showed reduced function all of a sudden. I asked one of the renal nurses to ask my neph to contact me - this would be the first contact since that appointment. He did, at the end of that day. He didn't treat me badly just because I'd been confrontational with him. He didn't engage in rambling abuse, and he didn't snub me either. He didn't treat me any differently to the way he's always treated me. He treated me like a patient who needs health care and advised me where to go from here. I do feel there is a bit of an 'issue' between us at the moment, but I don't feel this is affecting his medical care of me whatsoever. THAT is how to be a professional consultant!! The patient's health should always be paramount, otherwise what's the point of working in that field!!

I'm so glad you've got to the point you needed to get to. It's not going to be easy, or cheap, but let's hope and pray that your kidney function continues as it is. I presume you'll continue to have bloods done through your GP on a fairly regular basis and then just make occasional trips to London for the time being while things are stable?

Good work soldier!! Well done for standing your ground and battling on until you received the outcome you needed. It's inspiring, especially for me as I have many battles of my own to fight at the moment.

When you receive the letter from Guys, I think you and your wife should go out for a meal to celebrate, and mark the day as a new start where you can put all this stuff behind you (as much as that's possible, I know it's not entirely possible)!

[Thumps]

I am astounded at the apparent lack of professionalism on the part of your neph, the Head Nurse and Hospital MD. I must ask though, did you involve your PALS at any point? Do they have one in Jersey? It's their job to avoid things like this escalating or going so badly. Also, did you follow the hospital complaints procedure through to its conclusion, and/or talk to the NHS Ombudsman?

The reason I ask is that if your neph really is that bad, in your position I would feel obliged to see the complaint through to the end to hopefully avoid anyone else having to go through what you have done. (I had an issue regarding some liver surgery before my Tx which necessitated several levels of complaint but in the end I got an apology and notified of changes to practises to prevent the same issue in future so I felt vindicated)

Having said all that, I do appreciate that the last thing you probably feel like doing is continuing to pursue this!

Here's hoping your kidney continues to behave and good on your GP for being so supportive!

Thumps x

[Kipper]

Hi Ali, thanks as always, I'll wait til I get the letter and see when Guys want to see me.
I was on 3 monthly appointments at clinic and would expect this to reduce if all continues as is.
If I can reduce the number of UK visits by having my doc do bloods then I'm happy to, saves time off work and travel expenses, it's our wedding anniversary later this month so I'll probably do a double celebration and really push the boat out, local chippy here we come!

Thumps, I honestly don't know if we have a pals, we do have a KPA but I didn't want to involve them as they had been so helpful post transplant paying for both myself to fly to London to attend appointments and for my wife to fly over and visit me post tx. As I'd been contacted by the head of nursing I assumed that she would take appropriate action to resolve. Combine her lack of response and my neph cancelling our meeting with virtually no notice and I concluded that no one gives a ****. Being ignored by the MD only compounded this view, the message I got loud and clear is we don't care. I didn't see the point in attempting to resolve as I felt there was no way this man would ever take my concerns seriously, my only option was to seek care off island.

I can't think of any profession where people could behave like this and still retain gainful employment.
No wonder my neph behaves as he does, no one cares, there appears to be no disciplinery process, he can do what he likes. If you make an executive complaint to a bank you will get a response as soon as is possible, I know I dealt with one at RBS and when Sir Fred Goodwin calls you have an hour to compose a response - different world.

I just want to move forward and put it behind me, I can't see any point in following the official complaint procedure if the head of nursing and the MD are fully aware of the situation and don't even respond to direct personal communication.

Thank God for this forum, don't get me wrong I have no axe to grind with the NHS, it's a couple of individuals providing sub standard service, I think the NHS generally do a great job. I think the difficulty arises when on a small island individuals exist in isolation, they don't work with peers in the same field, effectively they are gods, completely untouchable.

Thanks everyone, it's a weight off my mind having finally got a result.

[Thumps]

I can't see any point in following the official complaint procedure if the head of nursing and the MD are fully aware of the situation and don't even respond to direct personal communication.

That's exactly what the official complaints procedures are meant to be for, to prevent individual staff treating people badly. I'd be surprised if there's not some info on such procedures on your hospital's website.

But as you say, I can well understand why you'd want to put this behind you. Trying to follow up on a complaint (especially one as involved as this) takes yet more energy which those who are in the position of needing that support often don't have, so I don't blame you at all for deciding to just move on!

I'd be happy to help you try to formulate such a thing or find details for your local trust if it would help, feel free to PM me if you change your mind.

T.x

[Thumps]

NHS staff are people - they're not well-oiled machines that are programmed to work the same way every day. Mistakes happen due to human nature, not through intentional malice.

This is true of course... that's partly the reason I suggested using PALS to liaise and going through the official channels, to make sure the whole thing gets resolved fairly... I'd always recommend that any patient who's having issues with their care, should talk to their unit and their PALS team for assistance, get a second medical opinion, whatever they need, as well as using this forum to let off steam. In the end, we're patients and carers, not medical professionals.

BUT! I do think that the original issue (i.e. that Kipper came here to rant) didn't warrant such a direct response from his neph, though - this is a kidney patient forum for support and companionship, and I'd say the vast majority of participants are aware that posts are emotional and coloured by personal experiences. For most this is the only place that people can come and SHOUT OUT at people who might have a shot at understanding their frustrations. We should be able to do so freely, in the knowledge that it won't prejudice our care.

[Kipper]

Hi Devil's Advocate, welcome to the site, I see you joined last night and mine was the first post you responded to.
May I ask you plainly, are you my consultant? are you one of his team?, you don't state your location. What stage of renal failure are you currently at, which unit are you based at, please introduce yourself we'd love to know more.

To respond to your points.

"Do you really think there was malice on the part of the consultant and that the team that work alongside him to cancel your appointment without letting you know". No I don't think it was malicious, in the world outside it would be viewed as incompetant, any individual making this mistake would apologise and most likely be reprimanded by their superior. I have at no point received an apology.

"I think it would have been polite to at least find out the reasons for this before making such direct complaints against the individual consultant" I tried, I arranged a meeting with the consultant and both myself and my wife took time of work to attend, it was cancelled 45 mins before it was due to take place, no reason was given.

"How would you feel if healthcare professionals had their own forum where they freely complained about their patients?"

They do, it's called the coffee break, they can and do discuss patients in the same way that anyone discusses difficult encounters at work. Lets expand on this, if doctors have forums where patients can be discussed I would think it entirely reasonable, providing patients were not named. I would certainly not view such a forum unless I wanted to view comment both positive and negative, you would be niave in the extreme to expect to find only positive comment.
I have never at any time named any doctor or nurse responsible for my care.



"Such damning complaints against one person can lead to a great deal of stress for that individual - and hence the response you got" Ah yes stress, lets compare having a moan on a patient website that exists to support renal patients, allow them to interact with people in their unique situation and let off steam with the only group of people who would understand. Lets contrast a consultant who chooses to view content on this site and doesn't like what he finds with the patient who has renal failure, has suffered under this consultant for the best part of 10 years and kept quiet until he discovered this site.

This patient has tolerated the following - being told that he had imminent renal failure and had between 6 weeks and 3 months before dialysis would be necessary. Discovering that this diagnosis was incorrect and finding that it took 5 years before dialysis became necessary. During this time he made it clear from the beginning that a transplant was his chosen course of treatment. Having his brother tested and finding that he wasn't a match he was at no point told that a non blood relative could donate and as such resigned himself to a cadavaric transplant as his only hope. He mistakenly assumed that he had been placed on the transplant list as he knows that some renal patients are transplanted before dialysis ever becomes necessary, he was wrong. 5 years after the initial diagnosis he underwent an operation to insert a peritoneal catheter to permit peritoneal dialysis. The fist time he dialyised at the renal unit he felt excruciating agony when draining out, he screamed "stop the pain" he was told to try sitting down, the agony persisted and this consultant was brought into the room, eventually ( time lost any meaning while hell reigned ) someone turned off the twist clamp and the agony ceased.

The patient suffered this agony every time he drained out ( that's 4 times a day ) for the next 3 months, throughout this time he was told a variety of things from it was transferred pain, to it would sort itself out. Eventually 3 months later after 360 ocassions of agony and fear of agony on a daily basis a phone call was made to Baxters who provide PD supplies, they said it was a known condition and that the patient should retain a small amount of fluid when draining out.

Whilst on dialysis fighting to get placed on the transplant list and complying with any requirements to achieve this end, in spite of his best efforts it took over a year to be placed on the transplant list. One of the requirements was attending a course at Guys hospital that explained all aspects of renal transplantation, it was at this time that he discovered that not only could a non blood relative donate but that transplants carried out before dialysis became necessary not only avoided dialysis altogether but had a greater sucess rate and a higher longevity rating. Guys hospital are big supporters of pre emptive transplants for this reason. He was never told about the benefits of pre emptive live transplant or that a non blood relative could donate.

As soon as he found out that a non blood relative could donate his sister in law offered and was tested, she was a suitable donor but needed to lose weight, some 2 years after starting dialysis the transplant took place.

Shortly after the transplant whilst recovering at home this consultant phoned the patient, he wanted the patients GP to take over responsibility for supplying prescriptions for the anti rejection drugs and other drugs required post transplant. No problem with this but he wanted the GP to do so without an accompanying letter authorising the transfer of responsibility. The GP was happy to take over but wanted a letter requesting transfer of responsibility, not unreasonable I would have thought, indeed I would have thought it standard practice. The GP refused to take over the patients care without this letter and the consultant refused to supply it - stalemate. The patient did not receive the call, his wife did, after a brief exchange he insisted that the patient change his GP, that if he refused to do so he would be denied the drugs he needed to keep him alive. The patient's wife refused, knowing her husband was very happy with his GP and had been for over 23 years, she refused to comply with the consultants demand. A rant then ensued during which the consultant shouted at the patients wife and insisted that he change GP, the wife endured the rant, stood her ground and refused.The wife contacted the GP ( also her GP of many years ) explained the situation and the matter was eventually resolved.

Move forward a year and the consultant phones the patient, he says that he has been monitoring his presence on this forum for some time but that he now felt he could no longer remain silent. He insists that the patient cease posting on this forum as he was responsible for low morale within the renal unit, furthermore he would likely adversely affect the opinion of any future patient coming under his care. When challenged the consultant started ranting and raised his voice ( possibly shouted, patient would have to hear him do his best shout to make a comparison, one persons shout is another's raised voice ) this went on for some time until the patient refused to discuss further and hung up the phone.


The patient then reviewed all his posts on this forum and discovered that of the 130 or so present, 4 contained comment that could possibly be viewed as negative. After a 4 day period of review and feeling that on balance he had done nothing wrong he posted the thread to which you are responding. Patient agrees to attend a meeting with consultant to resolve, meeting is cancelled with less than an hours notice. The head of nursing and ambulatory care contacts the patient to say she's aware of an issue but doesn't know the nature of the problem, patient comprehensively explains the history and issues he's had, makes it clear that a response is required in order for him to continue to attend appointments at the clinic. After 2 months no response is forthcoming, not even an acknowledgement. Patient then writes to the managing director of the hospital fully explaining ths situation and making it clear that he wishes to be assigned to the care of a UK renal unit otherwise he will refuse all treatment and when transplant fails allow himself to die.The letter is sent recorded delivery and a copy of recipeints signature is obtained along with date of recepit. After 3 weeks and past the point when the patient should have attended a clinic appointment the patient contacts the local newspaper in desperation.

The journalist contacts the local health dept and awaits comment, comment advises the journalist that the MD will write to the patient. patient receives a letter from the hospital MD, it's dated May 31st but the post mark shows it was posted a week later ( why did it take a week to post ) Patient is told that his consultant has written to Guys hospital requesting that they take over care of this patient, they await a response. patients GP phones him on Friday 17th June to say he has met with the consultant and been told that the patient has been accepted by Guys hospital, a letter will follow. Patient has yet to receive the letter but knows his GP can be trusted and posts an update on this site.

This isn't a game for me, I don't forget about it at 5pm when I finish work, it's full time, this is my life that I'm fighting for. You talk about stress, I've suffered nothing but over the last 4 months whilst I have desperately tried to resolve this issue. I've been ignored, wondered if my transplant is failing, do my meds need adjusting, am I going to die. I submit that if you don't want to know what patients think good or bad then don't view forums intended to support them.

I have at no time in the past 10 years ever received an apology, I myself apologised for the post which I suspect started this whole sorry process, I removed comment posted in haste, I have tried to remain balanced and objective while struggling with barely believable obstruction from people who are supposed to care for me. I have made it absolutely clear in my communications to the head of nursing, the MD and the newspaper that I have no issues with any of the renal nursing staff, only with this man. Whilst I await the letter of confirmation I appear to finally be at the point when I can be assigned to a neutral caregiver, it will cost me between £150 - £200 a time to attend plus a day off work but I will gladly pay this price.

If you are genuinely affected by renal failure and are responding to defend healthcare staff then I agree wholeheartedly with your view. They do work hard, they are underpaid, they face funding cuts and staff shortages but it's not them that i take issue with, it's a single man who has been permitted to behave in a way that would see him sacked from any other profession.

I apologised for the post that sparked this whole debarcle, I removed a comment I'd made in anger, I have never during my 10 years under this man at any time received an apology.

I don't mean to offend you if you are new to this site, this has consumed my life for the past 4 months, I've barely slept, my blood pressure is through the roof, my marriage has nearly ended and I've been unbearable around the people I love.
I beleive I have secured a repreive, for aslong as my transplant continues to function I can live a normal life, when it fails I don't see how I can be cared for remotely, I won't permit this man to resume my care, I will let nature take it's course. For as long as my transplant continues to function I plan to live and enjoy life, I will try to make good with the wife I nearly lost and the friends I've offended, in short I'll try to put this behind me.

Sorry everyone this is a long and emotional response, I hope you can forgive and understand.

Keith.

[Kipper]

Sorry following Thumps reply I noticed that you had in fact posted twice, the first outlining your situation, I have therefore revised my response.

The system in Jersey is unique, we may or may not have pals and I'd be very surprised if the complaint procedure were the same, even if it is we don't have government in the same way you do and I'd be surprised if we were measured against UK targets. I did try to resolve through what I considered to be normal channels, I was contacted by the head of ambulatory care and took the opportunity to fully explain my situation, I made it clear a response was required in order for me to continue to receive ongoing care.

I received no response, not even an acknowledgement, I got the same from the CEO, this doesn't compute with me, I felt I was being ignored and in desperation contacted a journalist.
That got their attention, I now have the result I'd hoped for, everything I've experienced over a 10 year period tells me that my consultant doesn't care, this recent episode endorses that view, neither does the head of nursing or the CEO as far as I can tell.

I think Keith Elliot's comment is very valid, I need to change the way I deal with health professionals, they are not subject to the same rules as the rest of us.
Hopefully I can start with a clean sheet when my Guys acceptance letter arrives.

Please accept my sincere apology for any offence caused, it's fair to say I've had a tough few months, hopefully the future will improve.

Thanks Thumps, valid impartial response, I could never be a mod - too emotional.

[Thumps]

Kipper, I don't think "Devil's Advocate" needs to identify themselves - they did make some allusion to their association:

I joined this site because I have a friend who is on this site and joined the forum because they have CKD. I also have a particular interest in renal medicine. I am an NHS worker and have worked in a number of hospitals so I guess I am playing 'Devil's Advocate'. I have also worked in specialist renal units.

I do also understand their point re: methods of complaining - Keith's point that the NHS isn't a corporate organisation is a key one here. This is the NHS advice page on complaining and in order to get resolution on complaints, however irritating it might appear, using PALS then the proper escalation routes through the hospital complaints department and then the Ombudsman if necessary is the most effective way of getting an issue resolved. It's how they get scored and measured and held to account by the Government. Your CEO letter probably never even got to his desk as it had never got into the right channels.

Please don't think I'm criticising or denigrating your situation. I do just think that Devil's Advocate is making some valid general points which hopefully we can follow if we ever find ourselves needing to be heard in future and try to understand the other side of the equation.
Hope Guy's gets back to you soon so you can move on.

Devil's Advocate - as Kipper's location is Jersey I imagine it was relatively straightforward for them to identify someone compared to some larger units - not sure commenting specifically on his case is going to be that helpful at this stage, really... appreciate the alternative viewpoint though.

Thumps x

[dkjane]

I thought most Doctors knew kidney patients go through an emotional journey!

We do need to voice our frustrations and get support form each other.

I could understand if a doctor would ask a patient to be carefull about taking advice from others, as we are all different.

I am shocked!

Jane

[Thumps]

I did a little investigative work and couldn't find any decent info on the system in Jersey - it's not technically part of the NHS, so the usual PALS/Ombudsman route doesn't seem to apply, which I imagine could well make it tougher.

Also - as far as I recall I don't think Kipper identified anyone by name (in fact it almost never happens,except in praise of an individual!) so I don't know if it's fair to say anyone gets 'attacked' - as has been said, this is a patient support forum so I think it's important that people feel free to vent their frustrations here, be they patient or carer or just an interested party!

Thanks for your posts DA and likewise I hope you'll continue to look in and post here, your advice is likely to be invaluable to people who don't know how to make their voices heard. I agree that it's important to do so but it can be very hard; ESRF can be very isolating, as it's extremely hard for healthy people (including medical staff, however well meaning) to understand the unremitting nature of such chronic disease, and it's hard to "fight" alone sometimes - another reason this forum is so valuable.

[Pam]

Hey Kipper,
I heartily agree with what everyone else has said! I do not think your neph has the right or the power to stop you from posting here. It's still a free world although sometimes we as kidney patients get treated as though we have no rights when it comes to stating our views or complaints. It seems to me your doctor is overstepping his professional boundaries in telling you that you cannot state your opinions in an open forum.
I don't hesitate to say that I think it would be highly unethical for him to compromise your care because of things you have had concerns about and mentioned here on the board. Doctors like to think they have all the answers and all the power over us as patients, but until they have walked in our shoes, they cannot tell us how to think or feel. You are entitled to your opinions and have the right to express them--especially here where we can benefit from each others' experiences. And if your doctor is not doing his/her job (cancelling appointments, skipping meetings, etc.) then they are the ones who should be on guard as they may be facing unemployment if the continue to do such shoddy work.
In my 40 years as a kidney patient I have also come across doctors that had questionable attitudes and lacked much in the way of professionalism. I found out a long time ago that some doctors do not appreciate that kidney patients know so much about their disease--it threatens them. Now I am going off on a tangent--sorry! Anyway, if I were you I'd keep posting as you have been...we need your input and experience as much as any other person's here!
Take care,
Pam