This is the forum for the Kidney Patient Guide. We welcome feedback about the site and any information that may be of use or interest to other visitors.
IMPORTANT NOTE: This forum is not for queries that would otherwise be addressed to a doctor. If you have a question about your condition or treatment please consult your renal unit or doctor. We do not have any editorial or medical resources to answer individual queries.
Hi everyone, im totally new to this forum, so i hope you dont mind me posting a message here.
i am a health psychologist, looking at the needs of kidney patients at Guys, im trying to ascertain how patients feel about the support services offered to them, (psychological, emotional or spiritual) and what can be done to make support better. if there are any patients from Guys on this forum who have opinions or experiences to share, i'll be really greatful to hear them, as well as the views of partners, parents, children of patients too.
While my work is based at Guys hospital, I'd be interested in hearing any thoughts, experiences or suggestions that anyone may have.
cheers! and hi to Bigbuzzard!
Last edited by Jennifer@Guys on Wed Feb 21, 2007 11:32 am, edited 1 time in total.
I am currently assessing the psychological, emotional and spiritual needs of kindey patients registered at Guys, to ascertain the effectiveness of existing support services and to improve provisions
Northwick Park has one renal counsellor who "dashes" by once in a blue moon!!! ok maybe not that less, but i see her at the unit once every few months literally...even when she is there she comes in and i dont know if shes like this with everyone but with me its something like "hi how are you? oh, im so busy have so many people to see" etc etc and 2 minutes later she's gone. ive never ever felt comfortable talking to her even when ive needed her bad and never would be comfortable talking to someone whos never around
"Those who bring sunshine to the lives of others cannot keep it from themselves." James M. Barrie
My daughter is a renal patient and was on paeds we had quite alot of association with the paediatric clinical psychologist and helepd us all as af amily and issues for Rachael too like needle phobia etc and coping mechanisms etc.
One thing we did find needing attention was overall NHS improvement required in communication from multi-disciplinary team members and liasion etc.
Well I'm seeing the renal counsellor & the chaplain fairly regularly, & usually make sure I see MY consultant. Not someone else, but there's nothing really organised together offically.
I'm a bit peeved currently as I don't usually see the consultant that I've been given the appointment for, so it will be cancelled & I'll book in with my consultant.
A lot of stuff I can discuss with him that just doesn't apply/comply with me seeing the other consultant.
Hi Jennifer
I have been lucky enough to see the renal psychologist at UHW during a critical stage of my condition and I know she helped me get through a really dark period. The problem is as far as I know is the service is not funded sufficiently to give all patients the help they need. ENSF is a lifelong condition, transplantation just a treatment option (as was told to me by a nurse as my 1st transplant was failing).
I feel the emotional wellbeing of kidney patients is crucial to their physical wellbeing. I have no idea of the stats but I am sure depression is a feature of many people with long term health conditions.
My hot topic. Don't know if things are different now for kids and adolescents but at 51 years old I seemed to have slipped throught the net, though I was diagnosed as a child I didn't have any patient led ie invitation to say how I felt about my illness. Maybe it was a cultural thing but sometimes when doctors feel awkward and don't ask - I reckon young people can think their feeling aren't important. Doctors dont' realise how much kids adore their parents and will do anything for them or comply with treatment so as not to upset their Mum's feeling (in particular). Unfortunately the kid may hide their feelings and it can store up trouble for later.
Now aged 51 - much later (diagnosed at 6) ... believe me it caused trouble - sufficient for me to have taken a pen ready to sign an advance directive for refusal of treatment. Just a little human insight and listening has proven life saving for me. Oh also - inclusion of family - ie invitation, letting a patient feel comfortable about taking a family member along if they want to to a psychological support session or two.
I would say to any psychologist or doctor, please don't just go by how a patient presents - they may be covering up tremendous stress. I would also say to doctors - blokes in particular not to be afraid of the feelings a patient has - emotions, aren't rocket science and too much distancing over a long period of time can be far more risky than a few direct questions about how a patient feels.
I musn't forget to mention as well that if someone is diagnosed in childhood it is also important for them to feel they have access to psychological support if they feel they need it REGARDLESS OF WHAT STAGE OF ILLNESS OR MEDICAL INDICATION - diagnosis is traumatic. I was told I didn't have access to these services as I wasn't 'ill' enough phsyically, though I clearly suffered psycholgical and emotional distress. Support should be offered and the patient should be invited. Please remember depression and isolation can be killers and however tight NHS budget clever techinical stuff is a waste of resources if a patient throws up physical medical treatment at any point. Its worth the support resouces just to offer the 'trained' listening and human insight.
Just a bit of support and things have turned round for me, though I must admist its taken a year and I reckon that it would all have been much less traumatic with a listening ear and support much earlier on regardless of medical stage of my illness. Listening carefully and being supportive also enocurages a feeling of ownership and some control/ partnership in illness management - so important in preventing depression -(I had severe depression as an adolescent and terrible isolation). I cant emphasise enought the importance of psycholgical support.
Please note I have already taken up all these points (and am now receiving support) with my renal unit and am awaiting a response from them. Hopefully they will take some of my points on board so that there won't be any more 51 year old Liz's about to sign up for refusal of treatment in the future. (I hope not with all my heart).
Re religion - I went pretty deep into religion, mainly because of isolation. It can be helpful as long its realistic ie actual people are willing to get alongside finding someone I could be honest with was just as important. Otherwise just going off on my own all the time to pray could have added to emotional difficulties. I guess I'm not scared of dying though, thats one good thing about believing in Jesus - I went through doubts but it was only deepened by some understanding for while from a GP who knew the medical reality for me (some Churchgoers added to the pressure and were critical of me). Ironically the Christian GP who helped me was also party to isolating me - I was refused a ministry of healing (James 5) because he also said at the time that I 'wasn't physically ill enough'. This was many years ago and I would say that there is nothing wrong with renal patients hoping/ asking for healing or spiritual help - whatever stage of illness, including according to James 5 (ministry of healing) - if they want it (it is an act of identification and special asking for God's undertaking as well as submitting to God). Again though this ministry involves people and understanding as much as faith. The nice thing is not just the patient's faith - a lot of doctors worry about pressue on the patient to have faith but when I did receive this ministry I felt under no such pressure.
Last edited by eliznew412 on Thu Feb 22, 2007 3:33 pm, edited 14 times in total.
Im a PD patient and went on dialysis with only a few hours notice. I recieved no offer of Psycological support and ive been on dialysis over two years now. Though i have to admt ive never asked for it either. As for emotianal support my family friends a were great so were the Docs and nurses at my unit at monklands made some good friends with them. Spiritual support came in the form of my parish priest who visited me in hospital i also regularily met one of the nuns from St Andrews hospice who came to talk give communion etc. I never reliesed how much religion could help till i was in that position.
I forgot to mention - I used several methods to get on track to receive RRT - but the most helpful was CBT. It took quite a bit of concentration. It may be worthwhile getting a CD disk for patients to borrow to make it more fun & user friendly if you haven't got one already. My psychocholgist lent me a book 'Mind over Mood' which has work sheets. It was useful in tracking mood, to situation to some idea of root/ cause thinking then facing the 'triggers' out. Also the MIND website gave a useful brief description of CBT. I was offered sessions after 3 months waiting - was told this was due to waiting list, but I think the consultant didn't realise how severe my shock was and that it wasn't just the yuk factor about dialysis - other things as well. As I've said I could have done with attention earlier in preventing trauma & creating more understanding before the 'dialsyis or die' issue came up. I think there is such a thing as preventive medicine in mental health in the renal unit setting.
Hi Jen, I was given a link to your post by BigBuzzard....as i am also interested in this aspect of ESRF and transplantation, both from a professional and personal point of view (I'm currently doing my nurse training in mental health and am a transplantee). I went from GP, to local hospital, to regional renal unit, through surgery and home on dialysis within a fortnight....and throughout the 18 months of dialysis and the resultant transplant have never been offered any help of support for my psychological emotional or spiritual needs....I used to think it was because this was all 18 years ago and that hopsitals operated under a medical model rather than a psychosocial model, but after reading threads on this site, sadly it doesn't seem to be the case. There appears to be a huge amouont of inconsistancy surrounding this issue.....however, post transplant support, it would seem is terribly inadequate.....renal disease is renal disease and is so, for life....transplantation is not a cure, merely a treatment option. However, since my transplant, I have found it impossible to gain any real support...either paychologically, financially or practically. This situation is really beginning to anger and frustrate me and I'm sure that I am not the only one!!! I'm not a patient of Guys, but I hope this helps (tho I appreciate its very late). I am currently lobbying Senior civil servants and my MP about this matter also...surely under the NSF there shoudl be more done for transplantee's.
Anyway...rant over....and good luck. Jane.x
I've seen a renal pschologist a couple of times. The roles that she played that I found more useful were :
3. Advising that appropriate sleep management is perhaps the most single effective measure tx patients can use (beyond taking the drugs as prescribed etc)
