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Postby akocsis » Sat Mar 11, 2017 2:50 pm

I am a clinical psychologist putting together a case for our renal department to have one or more psychologists. The aim is to look at how the care is offered and to make sure that the human and emotional side of treatments are properly considered. I'd be grateful for any thoughts about what would, or has made a difference for you, in getting through kidney disease, dialysis, transplants etc. or in caring for someone going through these things. Thank you.
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Postby Birdman » Sun Mar 12, 2017 1:39 pm

akocsis wrote:I am a clinical psychologist putting together a case for our renal department to have one or more psychologists. The aim is to look at how the care is offered and to make sure that the human and emotional side of treatments are properly considered. I'd be grateful for any thoughts about what would, or has made a difference for you, in getting through kidney disease, dialysis, transplants etc. or in caring for someone going through these things. Thank you.

Firstly, may I say that having psychologists in renal departments can only be a good thing. But there are so many ifs and buts behind your post, I am actually finding it difficult to answer.

Where is the perameter where medical intervention and psychology cross? I really don't know. So I will say what I think, and you decide whether it is appropriate for a psychologist or not.

I have to say that I found one phrase in your post rather odd for a medical professional. It is "getting through kidney disease, dialysis, transplants etc". Maybe it is ambiguous, and can be read more than one way. But the way I read it leads me to say that no-one I am aware of has ever "got through" kidney disease. I am on haemodialysis, and for me and Mrs B, it is always with us. No matter what anyone's temperament, it can never be "got through". Dialysis is VERY HARD for everyone involved.

You don't say where in the world your department is, which would help, as care differs widely depending on the location of the unit concerned. In general, the day to day care is very good in the UK. It is the peripheral issues that are lacking. I find communication to be a nightmare. Also, holiday dialysis is becoming practically non-existent in huge swathes of the UK. North Yorkshire for example. The psychological aspect of not being able to visit family and friends simply because there is no NHS dialysis unit prepared to take visitors is a huge downer. If holiday dialysis could be sorted out properly, it would help the well being of many of us I am sure.

Mrs B & I also find that professional help is useful in regards to the day to day human and emotional aspects. I am sure other kidney patients will tell you what we have experienced. We have found that some friendships/relationships we believed were solid have crumbled. We have lost people we considered close because they simply couldn't deal with the changes in our lives that dialysis brought. Conversely, people who were not close friends have been absolutely wonderful, and shown how much they are the really important people we should be grateful are in our lives. A psychologist could explain that better than I.

Those of us with kidney disease, at whatever stage, are human beings. I have started another thread today about not being told what blood tests are being taken for. We are not robots, and don't want to be treated as such.

Hope this helps a bit.
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Postby eliznew412 » Fri Mar 17, 2017 12:45 pm

Hi. Its a long time since Ive posted. I was diagnosed aged 6ys and wad considered too fit to need psychological support. However diagnosis of severe bilateral renal damage, being told id have problems having children and roughly managed by rather emitionally dim consultants left me isolated and repressed in my nice middle class family. In 2006 I was told i was stage 4/5 renal failure and wld need dialysis soon. I was left in shock for over 6 months and had no one tp talk to. When I did eventually get help it was grudgingly given and not patient cented. I was made to feel a nuisance and time consuming. Psychologists wld be great but, the big but is that the purpose must be stated as patient centred. Too often they are only fundef and deemed useful if they explain a patient to a consultant. I was told by the one in Bristol that consultants dont listen anyway. I got treat like a naughty girl. renal unit culture needs addressing and educating in my experience and shld be intrinsic to renal unit psycholgists mission statement. They dont to get treated with distain by consultants. Good luck. I hope you get support from young enthusiast consultants open to change and learning.
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Postby wagolynn » Fri Mar 17, 2017 4:07 pm

I found the best solution is to learn as much as you can about your condition, these web sites I found very good, accurate and reliable. The hand books tend to be a bit technical but OK.

There are many good books on the subject, with knowledge you are able to ask relevant questions, all the medical people I have come into contact with have been very helpful.

Question about time scale cannot be accurately answered as every patient is different.

Best wishes.
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Postby elizzynew412 » Sat Mar 18, 2017 11:57 am

Thank for the reply. It really does highlight the need for renal unit psychologists to be there a much, if not more for the patients than for the consultants. There can be too much reliance on sending the patient away to fill in the worrying gaps in what the consultant didn’t' say from online sources. A renal unit psychologist can assist a renal unit's rather hot house insular environment to be more sensitive to ALL renal patients not just the younger confident resilient ones. Generally they do tend towards a hierarchical patriarchal culture - male directed even when female consultants are present.

The effects of a renal unit culture over time on ANY young patient, over time is going to be considerable. As the staff are considered to be coming from a "healing" and therefore positive mission, their effect on the young patient over time and also on the patient's family are often overlooked. They frequently build relationships over time with members of your family. I have heard of the horrific undermining of young adult women with consultants telling their boyfriend/ partner or husband that "she won't be able to have children you know". In my experience I had a bad experience of a mentally abusive husband, getting in a rage and phoning my consultant and claiming I'd given him permission to see him without me present He was told "there's nothing to worry about - she is just a bit depressed" My damagy ex then proceeded to bring in all sorts of odd people from the church to cheer me up and tell I ought t trust Jesus more!! The same husband came raged at me for dropping a tea cloth on the floor. Consultants do jump to conclusions. The consultant however told me whilst looking at me bonny 6 week old son "I told you it wasn't worth the risk - you'll be on dialysis by the time he is 7 years old".
By the way my so is now 36 years old and I'm still not yet on dialysis!!!

I guess its this serious lottery of hit and miss with the attitude of consultants that renal unit psychologists could address if they were given the platform and status. Consultants and staff do need to look at the way they "deal" with patients.

After a shaky start on transferring to the Queen Alexandra in Portsmouth they do seem to be less hierarchical and therefore less likely to operate as an protective conclave Mostly its the sheer numbers and costs of renal patients ie pressure of time that make it harder to check out their own behaviours. Also there can be an incorrect way of teaching staff to "de-personalise". They could learn a great deal from the style of humanistic counselling where you are trained to regard patients as generally capable and to respect what worries the patient the most.

Over the last 10 years I've been stage 5 renal failure, which is a bit unusual but it still very valuable time that needs sensitivity and represents a large proportion of my life. In this stage however I've really been treated like a "naughty child" for having been largely undecided on renal replacement. I've been shoved into very large groups for "education" on dialysis, shouted at and bullied. I've been lectured by a GP that my whole mission in life is to highlight my disempowerment. The only decent counselling I had, I had to pay for privately!! Any half decent counsellor isn't taken seriously by the renal unit - I even paid for him to come along with me to one appointment! It was really a waste of time because the consultant didn't listen. How weird that the only person they listened to was an abusive husband (I divorced the guy years ago). The complaints procedure in Bristol was rubbish and I was again treated like a child. My local MP was not advocate and supported the renal unit against me. Its really scarey how as a vulnerable female patient I actually disaapeared as a real person, particularly whilst I was a married woman. I went under the radar of their assumptions and stereotyping.

Well in 1969 as a sensitive 14 year old you can expect a consultant to tell you mother off in front of you when you refused yet another invasive and embarrassing X-ray with the words "can't you control our daughter" but underlying attitudes haven't changed much.

Of course growing up with this weird ill but really ill, illness is confusing but the culture is equally enduring, even when subtle. I've been described in one letter from a consultant as "challenging, eccentric" alongside "traumatised". Well this traumatised, challenging and eccentric old bird holds down a full time job, has worked in massively demanding call centres and is respected in her current job. I clearly wasn't' at that time seen as a basically sane, reasonably sensitive and capable human being. They always wanted to categorise me.

Having had a lifetime of being stereotyped like this and in 2 different hospitals I tend to think it isn't all just me. I find that an emotional turmoil I express is immediately countered by the consultant but anything they think about me is difficult for me to counter. There is not much respect for the real me and anything falling short of their notions of what I should be needs therapy so that they feel better. There is desperation to get a patient "on track". It feels like a failure to live 10 years in stage 5 renal failure - a weirdo.

Renal unit psychologists do have the opportunity to check out these sort of views of the patient from consultants. They really need to stop and check themselves out before searching their patients for better attitudes towards their illness.

And why do I write about it publically and challenge the culture? Well anyone can understand a mistake or two, particularly in an emotional situation but a life time of a heavily patriarchal influence has a huge effect on a young person. I didn't say boo to a goose as a child - very quiet and quietly lost confidence. I reckon it lead to me making a bad choice of marital partner. I didn't even know my own feelings, only my mothers. I asked the renal consultant why I hadn't had help as a child so that these issues were identified - he just said "you weren't ill enough". Guys that how thick medics really are. Anyone know diagnosis hanging over a child and the way the family treat that child as well as the renal unit has a huge effect on their development and opportunities in life.

I think even my story on its own highlights the crying need for really good dedicated and valued renal unit psychologists, particularly in hard pressed times where renal units become akin to sausage factories unless we counter it! Quality of life not just length of life is so important.
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