Had a rough time? - will your renal unit makes things worse?

[eliznew412]

Since 2006 I have felt very isolated and unsupported as a stage 5 renal patient. I kept recalling how my ex-husband used to yell at me and bang walls till they split, because the stress I felt as a renal patient. However he loved to discuss politics and wonder if I was "through with the Lord". It took me years to escape him because he was plausible and didn't leave visible bruises on me. Professionals, including the Christian GP turned against me and I knew that no-one was likely to believe me if I complained. I was threatened and a psychiatric community nurse told me to pull myself together. Its distressing enough wondering which way your renal function is going to go after having had a baby.

Years on and the whole dreadful experience repeated in my head. I talked to the renal unit psychologist. It defies belief that a consultant who reckoned I was distressing her by being ambivalent about renal replacement therapy took it into her head to accuse me of being "manipulative". Not happy with one accusation she then said "What do you want/ Do you want money?" "Go home and make up your mind if you are having treatment or not". "The level of attention you are getting in the renal unit isn't standard you know."

Before you all correct me and tell me what I should have done - I have reported the un-named consultant to the GMC. She should at least have had the good sense to check out things with the unit's own psychologist and treated her as part of the team instead of getting some daft/ dangerous idea about me being manipulative into her head. But know - like "gods" they know best and can dismiss past trauma as not relevant to the present. I dare say she hasn't been suspended as its just words and emotions - and they aren't important are they? The result was dangerous however, as I felt so low I went home ready to sign up a directive to refuse renal replacement therapy. If a relative had treated my like that it would be criminal.

I took my case to a formal complaint, carefully trying to avoid being too specific incase the consultant was suspended and made a generalised complaint about the uncaring culture and lack of holistic support. I have posted on here before regarding how that went! Through tears I transcribed the recording of the meeting and managed to send my complaint off to the ombudsman. Apparently the ombudsman only considers complaint appeals if they are within 12 months of the incident. I have had to write down the whole story again and then I remembered that the consultant had threatened me to the extent that I felt I couldn't complain. "It’s your word against mine. No one would believe you. What are going to do about that then? If anyone asks me I will deny what I've said to you." That’s why it all got delayed and I honestly went home ready to sign my life away. I am not the blubbing sort. I'd got used to distress being ignored and my life being worth nothing because of the years with a mentally abusive husband.

Why, you may ask do I post this distressing tale on the chat board. Just 2 weeks ago, having had a distressing time at work as a customer service advisor and 2 years working full time with endless inbound calls with complaining customers, I made the heinous mistake of not being able to bottle up on one call. Apparently I was sarcastic with a customer about their refund claim. The customer complained, the call was monitored and I was hauled into a "Disciplinary meeting" which then resulted in an instant suspension on the grounds of "gross misconduct". "Why?" I asked spluttering and escorted out of the door and PID removed from me "when I didn't nick anyone's card details and when my only error was not to be able to handle a distressing caller?". A week later I go back to a 2nd hearing with CWU rep present. The rep heard the monitored call and agreed it was a lack of training handling a pressursing caller. Anyway I got my job back and my PID but apparently it’s on my "record" for a year. Too many sickies in the call centre and they sack you anyway - so what the.....anyway.

My point is - the passenger that complained about me is still alive but if I hadn't recognised that the way my consultant had treated me and the way the complaint was handled as wrong, would I have signed the directive to refuse treatment? And the answer is - yes I would have done. What kind of sick society pays huge attention to a customer whining about a late processing of a refund as more important that pressuring a renal patient to the point where they feel utterly alone and kicked around with no means of redress? Is it really acceptable for any renal unit to so strongly desire that all patients are merely "consumers" of services rather real human beings needing understanding and support? I am sorry that poverty upset their sensistivities but when asked directly why I was considering palliative care, should I carefully omit this aspect so I don't upset them?

To date the only support specifically for me as RENAL PATIENT has been and is the advocacy officer Kate Creswell and she has to cover the whole of the South West region.

I have felt unable to go back to the renal unit. I have had no complaint about the support staff ie nurses, blood ladies and gents - even the surgeon. Whoever said "sticks and stones will break my bones but words will never hurt me", was lying. Unkind words and false accusations are hugely damaging and dangerous. Well if the ombudsman decides my reason for delay in forwarding the case on to them is kicked out I can only thick that society has got very sick values. My customer got her refund and is alive and well. Now that I have had to go to the expensive of selling up and moving to a different hospital catchment area and I hope I will find more kindly treatment - that’s providing they haven't slagged me off in their medical notes about me.

I would like to say how invaluable Kate Cresswell support has been. She is the only person in a strong position to hear these dreadful accounts when things go wrong and gathering information on best practice in order to address some of these issues, from across the South West region. Complaining isn't easy and the systems in place are scary but thing don't improve and in fact get worse if patient to put up and bottle up. If we are not careful patients may well end up refusing treatment for economic reasons and social reasons - not to be a nuisance or even out of embarrassment. We will then have accepted the very worst aspect of the American health system where the rate of refusal is way higher. No renal unit should be encouraging things to go that way. ...ie if you have money and support you live, if you don't you die.

ps If anyone is considering palliative care because they are hard up financially and make the mistake of telling their consultant, apparently they will be referred to the appropriate charity. I doubt if consulants even have the training to know about benefits or charities and currently there is no social worker in the Bristol renal unit. If you are in distress, you can contact Citizens Advise but the waiting time is about 6 weeks or more. If you are in ongoing intense psychological distress you should be made to feel that you are time consuming and that you should hurry up to make up your mind about treatment or that you are manipulative. HIgh time renal units like Bristol treated the pschologists a serious part of their team, not just an expensive luxury to support consultants but as a genuine important support to the patient.

ps If you have had a good experience of support regarding holistic life issues, please do reply. We need to encourage best practice in all renal units, not just a few. Also please do mention which type of health worker gave you that support - eg Psychologist, Social Worker, Nurse or even Consultant. I understand that the Exeter unit is considering having their staff attending the unit periodiaclly to assist patients with advice. This sounds like a great idea.

pps Why when things go wrong do they not get intercepted? I have been under severe stress since Spring 2006 - that 8 years and bottled up stress long before 2006 because I thought no-one would believe me. If I had felt able to tell someone I doubt it would have reached such high levels of distress to the point that it endangered my life. All you need to get isolated is prolonged bullying and to feel that no-one will believe you - because for years they didn't. This sort of thing shouldn't happen in a civilised society.

I hope I get a job in Havant when I move to the Portsmouth area. Will keep you posted. I will make an extra effort to try to attend the October KPA Conference. Its so important not to get isolated as a renal patient from childhood.

[Vejovian]

I found cbt helped me a lot. Saw Annie Mitchell, renal psychologist at Plymouth uni, she was excellent I thought. Cbt works well for me. Good luck!

[wagolynn]

Hi elzanew412,

Viewed from your perspective, that is a terrible story.

I am not medically trained or a psychologist just a seasoned traveller through life but reading the post, CBT, as vejovian (above) suggested, sounds to be right to me.

Your point about NHS patients being 'consumers' of care - in my experience this is what the NHS hierarchy and successive governments have strived for. Stopping nursing training and replacing it with nursing education has driven patient care out. Care, is not in the he NHS lexicon anymore. I agree it is all too easy to begin to see patients as subjects for treatment as apposed to individuals who require treatment.

Best wishes.

[Vejovian]

Not sure if Annie has a contract with the renal teams these days...but you might be able to ask her secretary....

https://www.plymouth.ac.uk/staff/amitchell

Cbt :

http://en.wikipedia.org/wiki/Cognitive_ ... al_therapy

http://www.nhs.uk/conditions/cognitive- ... ction.aspx

[jbell]

CBT has helped me in my life such a lot, but to this day I have no idea how it did work but I would recommend it to anyone who feels they may need it.

[lizbee]

can anyone tell me what is cbt I have never heard of it.............I do hope things improve for you even in some small way


Liz

[jbell]

Well I am hoping it stands for Cognitive Behaviourel Therapy, if it doesnt then I am talking about something completely different !

[cazpi]

As a former motorcycling instructor, I had always thought it meant Compulsory Basic Training.

[jbell]

Kind of sounds like the same thing in principle doesnt it ?

[Grey]

http://en.wikipedia.org/wiki/Cognitive_ ... al_therapy