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Kidney Life - A Day in the Life of Patricia Franklin

 

Senior Clinical Nurse Specialist Psychologist in Transplantation - Patricia Franklin of the Oxford Churchill Renal Unit (now in semi-retirement).

By Deborah Duval

Picture of Patricia Franklin

What group of patients do you look after?

I was there to look after all patients and their families, from diagnosis to post transplant.

What is a psychologist?

A psychologist is someone who is trained to help people through any emotional issues they may have, throughout the different stages of their illness, in relation to their lives, and to perhaps help them identify ways of coping through those different stages.

Some people might find it difficult to admit that they are struggling for whatever reason, and I suppose some might also find it difficult to put those concerns into words. How do you assist these people?

There are certainly people who find it very difficult to actually admit they are struggling, and some might use denial, and really don’t want to address these issues. But what I have found is that people experience these anxieties but won’t discuss them at a general clinic because they will say “Well, I don’t want to waste the doctor or the nurse’s time”, so they just bury it all away. So often you have to give them permission to share those issues with you, so that once they’re out and that initial uncomfortable stage is over, they feel its ok to delve deeper. And what has been so beneficial in this last position is that I was able to offer them time; usually a series of 6 one hour sessions. This means that we don’t have to concentrate just on the really difficult issues, we can actually talk through all the different areas of their life that were impacted by their renal failure.

It’s amazing really but when people are sitting in the waiting room, although they might speak to other patients, they don’t discuss their really deep emotional concerns. So at our meetings I can tell them that other patients do suffer in much the same way, and this information seems to give them the permission to open up and discuss what is troubling them. Knowing that they are not alone seems to ‘normalize’ their concerns and then we can work out ways to cope together. Often the disease has made people so angry and so aggressive. Once they realize that what they are going through is normal, the anger subsides and they don’t feel they are a bad person.

I think we’ve all experienced the screaming heebie-jeebies at times during our diagnosis and our treatment, but is it not the case that for most of the time we’ve got our fingers ‘plugging the leaks in the dam’, and there’s a fear that if we let those fingers off those leaks then there will be flood of negative emotion, and that release of negativity might impact on our physical wellbeing?

Often people refer to this as ‘opening Pandora’s box’ and “I simply can’t go there”, or “if I start crying then I’ll cry forever”. Well it’s my role to say “It’s ok, and we will have regular meetings and I will talk you through that”. So sometimes people just need to be able to share what they are feeling and you need to be there to ‘hold’ them through that stage so that they can hopefully move on.

Loss of kidney function; or loss of health for that matter is much the same as bereavement and there is almost always that period of anger, distress and denial to go through, and I think it is very important to be there for them during this time and let them get all this anger and distress out. Everyone is an individual and so everyone will go through this in a slightly different way, and will discover a different way to cope. Some people cope by saying they are going to go home and look up facts about their condition on the Internet, some will look to their religion or seek spiritual guidance. Others just need to talk through it stage by stage.

Do you suggest coping strategies?

I try to get to know them and feel what might be the best for them, and I try to let them come up with their own coping strategies. But I’m also there to offer positive feedback to those suggestions.

Are people embarrassed to ask for your help?

Oh yes! Sometimes when someone is struggling and it is then suggested that they might like to come and talk to me they will say “But I’m not mad!”, or “if I tell you this you’ll think I am the village idiot”; and then they go on to express their deepest fears. Perhaps if it is a young woman she might say something like, “If I get a man’s kidney will it change me in any way?” It’s up to me to build that rapport with them that will enable them to share these things with me.

What about those people who know what they want to say but find it difficult to find the right words?

Well, that’s part of my training. I have to look for the message buried in the words or just listen for signs. It’s a bit like GPs who have 10 minutes with a patient, and then as they go out of the door the patient will look back and say “Oh by the way...” and the real reason for the visit to the GP will emerge!

Do you deal with all patients?

No, not children; there are specialist paediatric psychologists who are specially trained to deal with young children. I deal with patients from the age of about 16 or 17. These young adults have a whole lot of other issues going on inside at that time of their life and it’s a really tough time for them.

What would be the normal route for a patient to get to speak to you?

Usually the nurses or their nephrologist would identify someone who is struggling and they would mention this to me and I would just introduce myself, and ask if they though a chat with me might be of use. So mainly they are referrals from someone here, and of course the nurses are very good at picking up the signs.

What sort of specific issue do renal patients have?

Well, when they are first diagnosed it is the shock and horror and ‘how am I going to cope with it?’, then there are the anxieties of what the treatment is like and also the impact the diagnosis might have on their life and their future. Often women are worried that they might gain weight post transplant, because dialysis has kept them slim. Then I quite often see people when they are at the stage where they are considering a transplant and we discuss any emotional anxieties they may have about having a transplant; what drugs they might have to take and the side affects, body image issues, ‘what happens if it fails’, ‘what will happen if I find it difficult to accept that I’ve got someone else’s organ’, ‘do I opt for a live donor’? Then after a transplant it’s things like ‘how do I know what a normal life is; I can’t remember what a normal life is’. Also of course it’s about helping the whole family to cope with life post transplant. There are some major adjustments to be made in a family unit sometimes. And often a couple will come in and talk to me and then the partner will ask to come and speak to me alone, because there are issues they don’t feel comfortable airing in front of their transplanted partner.

Many of the transplant related issues are more easily resolved these days with the availability of new immunosuppressant drugs. Years ago there was little choice and many of those drugs did come with some obvious and unpleasant side affects, but these days there are new drugs which make life much easier for a transplant patient. Sometimes they will see another patient who looks wonderful and say ‘I want whatever he or she is taking!’ People in the medical profession now are listening much more to patients now and are much more willing to discuss options and try very hard to give the patient what they want.

After a transplant some people are anxious because there is very little they themselves need to control in order to look after their transplant, compared with the level of control they had to exercise over every aspect of their life when they were dialysing. Sometimes this can lead to panic attacks. Also people come along to talk about their changed role within the family, and of course sexual issues. Even if a patent’s sex life wasn’t that great before they became a renal patient, they still expect that this will change post transplant; and of course it doesn’t necessarily change. Some people worry that they don’t feel as great as they thought they would post transplant – and they all need to talk this through with someone.

For some people the transplant represents the Holy Grail; after the transplant everything is going to be wonderful, I’m going to be a wonderful mother etc etc. Then if they don’t feel that great they begin to feel disappointment and guilt. So I help them work out realistic goals by perhaps looking at their life before the transplant and helping them identify aspects that have improved.

Do you find that some people find it difficult, post transplant, to shake off the ‘patient’ label?

Certainly in the initial stages just after their transplant they consider themselves to be a patient, and then when they are transferred back to their nephrologist this recedes a bit and as time passes it becomes much less a part of their life and they only call themselves a patient if they need to explain their history to someone. They usually feel quite attached to the unit and to their nephrologist and really need that contact every three months or so.

It is also very important that people realise that transplants are not a cure; but something that will, hopefully, give them a good quality of life for a very long time. But the renal failure is never going to go away.

It is a well known psychological fact that a transplant will not take away health related anxieties; it just changes them. So when you’re on dialysis you have one set of health related anxieties and then when you have a transplant you might feel you have another set. Hopefully you just get out there and have a great quality of life around those anxieties.

Not every renal unit has its own renal psychologist, but if you feel you would like to talk to someone about any psychological issues you might have (whether you are a patient, partner of a patient, family or carer), have a word with either your nephrologist or one of the nurses at the unit and he or she should be able to refer you to someone. Talking to a psychologist during a difficult time at any point in your treatment may well help you to clarify your concerns and discover a simply coping strategy to suit you. Don’t be afraid to ask!