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Beyond the Surgery: The Psychological Challenges of Hand Transplants
Episode 46th December 2024 • In Safe Hands • Leeds Teaching Hospitals NHS Trust
00:00:00 00:32:30

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In episode four, host Caroline Verdon delves into the intricate psychological aspects of hand transplants with expert insights from Dr. Maggie Bellew and Dr. Rachel Mandela. The episode highlights the critical role of psychological assessments in hand transplant procedures, illustrating the balance needed between physical and mental readiness. The discussion covers patient expectations, the selection process, and the ongoing psychological support crucial to the success of hand transplants. The episode explores the unique challenges of hand transplants, including psychological rejection and the importance of donor limb acceptance.

Produced by Under the Mast, this episode provides a moving insight into resilience, medical innovation, and the human spirit. The podcast is presented by Caroline Verdon

You can find out more about hand and upper limb transplants at LEEDS TEACHING HOSPITALS NHS TRUST here

00:00 Introduction to Leeds' Hand Transplant Team

00:31 The Role of Clinical Psychologists

01:24 Initial Patient Assessment

02:40 Managing Expectations and Risks

04:19 The Importance of Psychological Preparation

05:37 Patient Experiences and Success Stories

20:34 Post-Transplant Care and Support

26:39 Dealing with Rejection and Psychological Impact

28:25 The Donor Aspect and Ethical Considerations

31:34 Preview of the Next Episode

Transcripts

Caroline Verdon:

In safe hands, stories from Leeds'

Caroline Verdon:

pioneering hand transplant team

Caroline Verdon:

coming up in this episode.

Caroline Verdon:

Dr Maggie Bellew: We don't progress everybody to hand

Caroline Verdon:

transplant because we know that it's not successful for everybody.

Caroline Verdon:

The very first hand transplant that was ever done was a physical and surgical

Caroline Verdon:

success, but was a psychological failure.

Caroline Verdon:

And we've always had it in our mind from day one, we do not want

Caroline Verdon:

that to happen to our patients.

Caroline Verdon:

Thank you for joining us.

Caroline Verdon:

This is episode four.

Caroline Verdon:

I'm Caroline Verdon.

Caroline Verdon:

And this week, I'm speaking with consultant clinical psychologist, Dr.

Caroline Verdon:

Maggie Bellew and principal clinical psychologist, Dr.

Caroline Verdon:

Rachel Mandela.

Caroline Verdon:

Now, they play a huge part in the hand transplant team, and are there right

Caroline Verdon:

from the very beginning from the initial meeting with a potential patient.

Caroline Verdon:

All the way through, in fact, for the rest of a patient's life.

Caroline Verdon:

Dr Maggie Bellew: It's a very detailed assessment because this is

Caroline Verdon:

not something to risk getting wrong.

Caroline Verdon:

The risk of psychological rejection is as strong as.

Caroline Verdon:

or stronger than immunological rejection and far more behaviorally damaging

Caroline Verdon:

and likely to threaten successful outcome from the hand transplant.

Caroline Verdon:

So it's really important to get the psychological assessment right and patient

Caroline Verdon:

selection right, uh, with a conformity as much as possible to the ideal patient,

Caroline Verdon:

both physically and psychologically.

Caroline Verdon:

So

Caroline Verdon:

what happens with your meeting with a patient then if somebody comes forward

Caroline Verdon:

and says, look, I've heard about this, I think I might like to have it done.

Caroline Verdon:

What happens with, with your involvement?

Caroline Verdon:

Dr Maggie Bellew: The first meeting is with the multidisciplinary team in a

Caroline Verdon:

big clinic where everybody's present.

Caroline Verdon:

So Rachel and I are both there, um, but there were also all the physios,

Caroline Verdon:

the OTs, various surgeons, because there's a big surgical team, nurses.

Caroline Verdon:

our medics from transplant and we all meet the patient initially at that forum.

Caroline Verdon:

Um, so that's the first opportunity to get some information noted down on the

Caroline Verdon:

patient, what their backstory is and pick up a few cues and clues about what

Caroline Verdon:

might be going on for this patient.

Caroline Verdon:

If it looks like they are going to be physically Suitable with no tests

Caroline Verdon:

being done at that stage, but just from the clinical examination by the

Caroline Verdon:

surgeons, then the next step is a clinical psychology assessment, but

Caroline Verdon:

they will also be going off for having bloods and various other medical tests.

Caroline Verdon:

So the first meeting with them is actually at the MDT, not the appointment

Caroline Verdon:

with the clinical psychologist alone.

Caroline Verdon:

That is on another day, and that is a long appointment.

Caroline Verdon:

It's either one very long face to face appointment or several

Caroline Verdon:

shorter video appointments.

Caroline Verdon:

Dr Rachel Mandela: One

Caroline Verdon:

of

Caroline Verdon:

the big things that we're looking, we're all looking for but Maggie's really

Caroline Verdon:

looking at in detail But we're all looking at in every clinic is are this person's

Caroline Verdon:

expectations, realistic, you know, do their wants and desires for how this

Caroline Verdon:

thing is going to change their life.

Caroline Verdon:

Does it fit with what the surgeon thinks?

Caroline Verdon:

Does it fit with what we think as a team can be achieved or is it not realistic?

Caroline Verdon:

Because what we know about lots of different types of surgery is that the

Caroline Verdon:

more the patient's, um, expectations are aligned with the surgeon's expectations

Caroline Verdon:

and the more likely the patient is going to be to be happy with the outcome.

Caroline Verdon:

Dr Maggie Bellew: So it hopes that

Caroline Verdon:

the assessment reduces the risk of psychological rejection and complications

Caroline Verdon:

and by extending that process over a year concurrent with the necessary

Caroline Verdon:

immunological assessment which also takes place over 12 months and that's aimed

Caroline Verdon:

at preventing immunological rejection.

Caroline Verdon:

But they're always warned about this year of waiting and it's this cautious approach

Caroline Verdon:

that underpins our approach to avoid rejection psychological and immunological.

Caroline Verdon:

So, we're looking at the patient's fitness to proceed from a psychological

Caroline Verdon:

point of view and it's a complex assessment and the length of time

Caroline Verdon:

taken ensures that the final decision is a stable and enduring one.

Caroline Verdon:

I suppose, you know, you could rush an assessment through

Caroline Verdon:

and, and do it a number of weeks, but then if you were to do that, the patient

Caroline Verdon:

would never have had the time to never properly sit with the the thoughts.

Caroline Verdon:

Yeah.

Caroline Verdon:

And sit with the processes.

Caroline Verdon:

'cause it must raise a lot of questions for them.

Caroline Verdon:

And perhaps when they come and see you, would it be accurate to say that

Caroline Verdon:

they might say one thing and then a few weeks later having thought things

Caroline Verdon:

through have changed their minds?

Caroline Verdon:

Absolutely.

Caroline Verdon:

Dr Maggie Bellew: Absolutely.

Caroline Verdon:

Um.

Caroline Verdon:

The assessment always raises things they hadn't thought of, and that's,

Caroline Verdon:

and it should do, that's what it's for.

Caroline Verdon:

Um, there are always areas that they've just not thought about.

Caroline Verdon:

Maybe issues about the donor, or issues about the reality of using a donor

Caroline Verdon:

hand to do day to day activities, but also very intimate activities of self

Caroline Verdon:

care, holding someone else's hand.

Caroline Verdon:

Um, Quite often they haven't thought about these things.

Caroline Verdon:

And sometimes people come along not wanting to think

Caroline Verdon:

about the risky side of it.

Caroline Verdon:

They just want to be positive, but actually part of my job is,

Caroline Verdon:

is to enable them to, to, to look at the risks and the benefits.

Caroline Verdon:

You can't just look at the benefits.

Caroline Verdon:

It's got to be an informed decision making process.

Caroline Verdon:

And a lot of time is spent on helping them understand the risks

Caroline Verdon:

and process of hand transplant.

Caroline Verdon:

Yes, the benefits, but all the risks, immunosuppressive medication.

Caroline Verdon:

Because there are risks with that and they need to understand that and how it

Caroline Verdon:

all works and all the ins and outs of it.

Caroline Verdon:

And it's, it's quite complicated material.

Caroline Verdon:

So we take as long as it takes for the person to fully understand it and be able

Caroline Verdon:

to remember it and retain it and continue to consider it so that they are really

Caroline Verdon:

making an informed decision and not a snap decision or trying to be a positive

Caroline Verdon:

decision, but a truly informed decision.

Caroline Verdon:

I was speaking to, um, a patient who was talking

Caroline Verdon:

about how when they first, uh, in the early days of coming to see you,

Caroline Verdon:

they were saying, I'll take any hand.

Caroline Verdon:

I don't mind the color of the skin.

Caroline Verdon:

I don't mind tattoos.

Caroline Verdon:

I don't mind male, female.

Caroline Verdon:

I'll take any hand and they were absolutely adamant that they just

Caroline Verdon:

wanted a hand and that was it.

Caroline Verdon:

Um, and then they were saying slowly, the more they talk to you and the more

Caroline Verdon:

questions that you ask them, the more they really started thinking about it.

Caroline Verdon:

And they came to the conclusion that as a tall man, they wouldn't

Caroline Verdon:

want actually a petite hand.

Caroline Verdon:

Feminine hand, they would feel as uncomfortable with

Caroline Verdon:

that as they do currently.

Caroline Verdon:

And since they've had the hand transplant, that has absolutely

Caroline Verdon:

solidified and they know they've made the right choice in being so picky.

Caroline Verdon:

But it's that part and that time and those questions that are so important.

Caroline Verdon:

Sounds to me like that really hinges on the success or failure of the transplant.

Caroline Verdon:

Dr Maggie Bellew: That is a really good example of an issue that

Caroline Verdon:

can change over time and needs to be returned to several times.

Caroline Verdon:

Because yes, sometimes they do come, they want to be really positive and

Caroline Verdon:

they don't want to reduce their chances of getting a transplant so they think

Caroline Verdon:

they ought to be as open as possible.

Caroline Verdon:

But actually a lot of the success of it can be on, on matching

Caroline Verdon:

because you've, you've got to be able to accept the resulting limb.

Caroline Verdon:

No one cares what your kidney transplant looks like because no one sees it, but

Caroline Verdon:

everybody sees your hand transplant.

Caroline Verdon:

It's permanently on view to yourself and others.

Caroline Verdon:

And if you're not happy with how it looks, you're at huge risk of psychological

Caroline Verdon:

rejection and all the things that follow on from that, like not complying with.

Caroline Verdon:

Physio, not taking medication and ultimately potentially losing the limb.

Caroline Verdon:

So it's important we get this bit right.

Caroline Verdon:

There's no right or wrong answers.

Caroline Verdon:

Some people are more exacting in their requirements than others.

Caroline Verdon:

Some people will be very open to accepting a hand that's quite different to their

Caroline Verdon:

original hand or hands, but some people are going to be more exacting and there's

Caroline Verdon:

no value judgment applied to that.

Caroline Verdon:

We just need to know what it is for that person.

Caroline Verdon:

And that can change over time.

Caroline Verdon:

I have to say the matches that we have got, because we.

Caroline Verdon:

go into in such detail beforehand.

Caroline Verdon:

Um, the matches that our patients so far have received have been extremely good.

Caroline Verdon:

And so they, they've been very happy with the outcome and, and that helps

Caroline Verdon:

them accept these hands as being their own and not a donor limb, but their own

Caroline Verdon:

hands, um, very quickly in our experience, quicker than we thought it would be.

Caroline Verdon:

That's something I found very interesting because I've asked some

Caroline Verdon:

patients do they think much about the the donor and the donor hand and whilst

Caroline Verdon:

they have said yes they do in terms of they're forever grateful and that you

Caroline Verdon:

know that will cross their mind multiple times it's their hand it feels like

Caroline Verdon:

it's their hand it doesn't feel like they're borrowing you Somebody else's.

Caroline Verdon:

Yeah.

Caroline Verdon:

And that's what

Caroline Verdon:

Dr Maggie Bellew: we really need.

Caroline Verdon:

Because if they do feel like it's somebody else's hand, not their

Caroline Verdon:

own, a dead donor hand, that can be a source of potential rejection.

Caroline Verdon:

They need to be able to feel it's, it's theirs.

Caroline Verdon:

And they felt like that almost immediate, but they've all been quite immediate.

Caroline Verdon:

Haven't they, Rachel?

Caroline Verdon:

We thought it would take a while for them to assimilate and to feel like they're

Caroline Verdon:

theirs and not the donors or something the surgeon would give them, but they

Caroline Verdon:

seem to have accepted them as their own.

Caroline Verdon:

Much quicker than we anticipated.

Caroline Verdon:

Dr Rachel Mandela: I could speak to the experience of meeting people

Caroline Verdon:

in hospital, usually the day after transplant, and so the hand will be

Caroline Verdon:

in dressings, in splints, but there'll be fingers sticking out at the end.

Caroline Verdon:

And what surprised all of us, I think, and it still surprises me

Caroline Verdon:

when I see it, is that straight away from the beginning, people are using

Caroline Verdon:

that hand to brush away hair from the forehead, even though there's

Caroline Verdon:

no movement in the hand, but they're using their shoulder and their elbow.

Caroline Verdon:

They're using it already to gesture.

Caroline Verdon:

Um, they're using it to brush hair away from their face, you know,

Caroline Verdon:

and they're using it as if it belongs to them, and that happens.

Caroline Verdon:

instantaneously, um, which I think is partly a testament to Maggie's very

Caroline Verdon:

thorough preparation, but also What's fascinating to me is the idea that

Caroline Verdon:

actually what makes a hand feel like your hand is the map in your brain, not the

Caroline Verdon:

piece of tissue on the end of your arm.

Caroline Verdon:

So, of course it still feels like theirs because the brain map

Caroline Verdon:

is the same brain map, and it's almost as if it gets accepted.

Caroline Verdon:

into the body plan in the brain almost overnight it feels, doesn't it Maggie?

Caroline Verdon:

It's been incredible how quickly,

Caroline Verdon:

Dr Maggie Bellew: but it's interesting if you contrast that with having a

Caroline Verdon:

prosthetic limb, because that's not the experience of having a prosthetic limb,

Caroline Verdon:

and it's an important part of our protocol that patients do try alternatives,

Caroline Verdon:

doing nothing, um, having a prosthesis.

Caroline Verdon:

The importance of having hands and the use of hands

Caroline Verdon:

psychologically, it's something I hadn't considered until we started.

Caroline Verdon:

doing the podcast, I would have just instantly have thought foot

Caroline Verdon:

transplant, hand transplant, surely they're the same, you know, and it's

Caroline Verdon:

only when you then sit and sit with that thought, you realize, wow, it's,

Caroline Verdon:

it's really, really very different.

Caroline Verdon:

And it, society is sort of based on our hands.

Caroline Verdon:

Dr Maggie Bellew: We don't appreciate them until we lose them, really.

Caroline Verdon:

They affect us physically and psychologically to a degree,

Caroline Verdon:

which is disproportionate to their size, integral to our self image.

Caroline Verdon:

They're always on view.

Caroline Verdon:

We're judged by how they look, what they do and what they reveal about us.

Caroline Verdon:

They're used in communication, written communication, gesturing, signs and

Caroline Verdon:

signals, pointing, very human thing, pointing, their contact between

Caroline Verdon:

individuals, formal, informal, kind.

Caroline Verdon:

Secrets, signs, salutes, friendly, unfriendly, sexual activity, they

Caroline Verdon:

provide information through touch.

Caroline Verdon:

They're the eyes of the blind.

Caroline Verdon:

They're used in our work, our leisure, our self care, and our independence.

Caroline Verdon:

So if the condition, function, or appearance of hands is compromised

Caroline Verdon:

in any way, the implications are massive psychologically, socially, and

Caroline Verdon:

vocationally, but we don't, we take it for granted until we lose them.

Caroline Verdon:

Dr Rachel Mandela: Something that I've heard over and over again from patients

Caroline Verdon:

is this feeling of completeness.

Caroline Verdon:

Yes.

Caroline Verdon:

When the dressings come down and you see along your arm and it ends

Caroline Verdon:

in a hand instead of ends in a stump, that there's a feeling of,

Caroline Verdon:

ah, I'm complete and it does, yeah.

Caroline Verdon:

And going back to the, the brain map, which I've mentioned before,

Caroline Verdon:

when we actually look at how.

Caroline Verdon:

Parts of the body are represented in the brain.

Caroline Verdon:

They're not proportionate to the size that they actually physically are.

Caroline Verdon:

So, the amount of brain map that your hands take up is huge.

Caroline Verdon:

You know, you think about how sensitive your hands are compared

Caroline Verdon:

to other parts of your body.

Caroline Verdon:

You know, you can tell which part of your hand is being touched.

Caroline Verdon:

You can rummage in a bag and feel the difference between keys and paper and

Caroline Verdon:

lipstick and, you know, So there's a huge amount of kind of sensory

Caroline Verdon:

information in your hands, which is represented in it taking up this

Caroline Verdon:

large proportion of the brain map.

Caroline Verdon:

They're not equivalent to other body parts.

Caroline Verdon:

It's

Caroline Verdon:

Dr Maggie Bellew: quite a thing to think about using the hand from somebody

Caroline Verdon:

else to self care, uh, intimate self care, holding the hands of loved ones.

Caroline Verdon:

and in sexual activity hands are a sexual organ and if you're going to find that

Caroline Verdon:

too weird to cope with again that would be a reason for not going ahead and they

Caroline Verdon:

also need to talk to their partners about it because if you if your partner is

Caroline Verdon:

not going to want to be touched by this hand and is going to be so disturbed

Caroline Verdon:

by it that it has an impact on the relationship again that's something we

Caroline Verdon:

need to know beforehand not afterwards.

Caroline Verdon:

Um, so I'll, I'll, I think we've realized more and more how much I need to involve

Caroline Verdon:

families in the pre op assessment stage.

Caroline Verdon:

So certainly partners, children, you know, we don't want to do

Caroline Verdon:

something that's going to make the family situation more difficult.

Caroline Verdon:

So again, we address all of that pre operatively.

Caroline Verdon:

How people talk about when they lose a limb,

Caroline Verdon:

still having sensation in the limb that is no longer there.

Caroline Verdon:

You mean the phantom

Caroline Verdon:

Dr Maggie Bellew: sensations?

Caroline Verdon:

Phantom sensations, yeah.

Caroline Verdon:

Um, how does that tie in with when, when they then receive a limb?

Caroline Verdon:

Dr Rachel Mandela: It's interesting, isn't it?

Caroline Verdon:

Because we, we have actually had somebody who experienced a lot of

Caroline Verdon:

pain in his hands before they were amputated for the hand transplant.

Caroline Verdon:

Were he to have had an amputation without a transplant, you might have expected

Caroline Verdon:

him to experience a lot of phantom pain.

Caroline Verdon:

But the first thing he said when he woke up after the surgery was pain's gone.

Caroline Verdon:

So I guess part of what we look at as well is are there any barriers, and

Caroline Verdon:

that could be cognitive barriers, to the person understanding the process.

Caroline Verdon:

So part of our role might be to do some cognitive testing and to

Caroline Verdon:

understand how's the person's memory?

Caroline Verdon:

Are they able to take on board and retain this information

Caroline Verdon:

enough to make a decision?

Caroline Verdon:

And it's not about saying no to people.

Caroline Verdon:

It's about thinking about whether we need to adjust our processes because

Caroline Verdon:

some of our patients have had illnesses, which may have affected brain function.

Caroline Verdon:

Some of our patients have had accidents, which may mean they've had brain injuries.

Caroline Verdon:

So that's part of the key part of the role of psychology here as well

Caroline Verdon:

as assessing cognitive function.

Caroline Verdon:

In addition to that.

Caroline Verdon:

Obviously our patients are a cross section of human beings, so they

Caroline Verdon:

come with potentially mental health problems which may be related or not

Caroline Verdon:

related to the reason why they're coming to for hand transplant.

Caroline Verdon:

Often it is, and as you can imagine, people coming with trauma symptoms,

Caroline Verdon:

having lost, lost their limbs, either through sepsis or, or, or through a

Caroline Verdon:

traumatic incident, quite often there's a piece of work for us to do there.

Caroline Verdon:

And usually what we do so we can, we can keep things clear is that Maggie will

Caroline Verdon:

assess and then she'll give bits of that work to me or to other psychologists

Caroline Verdon:

in the team who might then treat the patient for post traumatic stress and

Caroline Verdon:

the assessment process is paused and then they come back into the service again.

Caroline Verdon:

I found this quite

Caroline Verdon:

interesting that that seems to be very much the ethos that this

Caroline Verdon:

isn't a person and you're dealing with one little part of them and that's it.

Caroline Verdon:

This is a whole person and every single clinician who sees this person sees, you

Caroline Verdon:

know, you know, sees the whole of that person and everything that they are rather

Caroline Verdon:

than whatever their speciality may be.

Caroline Verdon:

Dr Maggie Bellew: Whether they've had, whether they've lost their

Caroline Verdon:

limb through a disease process or an accident, they can all be traumatic.

Caroline Verdon:

Experiences being extremely unwell is very traumatic, having a physical

Caroline Verdon:

accident can be very traumatic.

Caroline Verdon:

Not everybody has PTSD, but we certainly need to be mindful of that.

Caroline Verdon:

And would it be fair to say then that in terms of this

Caroline Verdon:

year's assessment, each assessment is catered to the individual as opposed to

Caroline Verdon:

there being a, if you have this, it's a no, if you have this, it's a yes.

Caroline Verdon:

Um, It sounds like it's very person centered.

Caroline Verdon:

Dr Maggie Bellew: Yeah, I mean, I have a, I have a protocol that I follow, that

Caroline Verdon:

I make sure I've done every section on it and fill it in, but it's necessarily

Caroline Verdon:

fluid and every patient is different.

Caroline Verdon:

There's, there's no two assessments that ever feel the same and it

Caroline Verdon:

stops and starts as appropriate.

Caroline Verdon:

Dr Rachel Mandela: I think, key point, key thing here is that when somebody

Caroline Verdon:

has a transplant we're asking, we're putting them through a lot of stress.

Caroline Verdon:

So they're going to have a really long surgery and then a really difficult

Caroline Verdon:

recovery process that probably will involve them feeling physically unwell,

Caroline Verdon:

psychologically stressed, having to stop their normal activities, having an

Caroline Verdon:

experience of being re disabled quite often because they might have been very

Caroline Verdon:

good at using their stumps and now they've got these weights on the end of their

Caroline Verdon:

arms that don't do anything at first.

Caroline Verdon:

So we need to help people get into the right place to be able to cope with that.

Caroline Verdon:

And so sending people in with untreated post traumatic stress

Caroline Verdon:

or depression that isn't managed, isn't, it's not a good idea.

Caroline Verdon:

We need to do that work before they get onto the list.

Caroline Verdon:

What if they don't

Caroline Verdon:

Dr Maggie Bellew: appreciate?

Caroline Verdon:

Dr Rachel Mandela: That's

Caroline Verdon:

Dr Maggie Bellew: what it's going to be like.

Caroline Verdon:

That was a brilliant description of what the post op period is like.

Caroline Verdon:

And if they don't appreciate that, because they only want to think

Caroline Verdon:

positively, and they don't want to think about the risks, and if they've

Caroline Verdon:

got really unrealistic expectations, then that would be, come as a huge,

Caroline Verdon:

perhaps unmanageable shock afterwards.

Caroline Verdon:

But clearly we don't, we don't want that.

Caroline Verdon:

Progress everybody to hand transplant because we know that it's not successful

Caroline Verdon:

for everybody and I'm sure Prost already told you the very first hand

Caroline Verdon:

transplant that was ever done was a physical and surgical success, but

Caroline Verdon:

was a psychological failure and we've always had it in our mind from day one.

Caroline Verdon:

We do not want that to happen to our patients.

Caroline Verdon:

Um, so a lot of people don't progress, they go through the

Caroline Verdon:

process and sometimes they.

Caroline Verdon:

take themselves out of the process because they decide it's not for them.

Caroline Verdon:

When they hear about the risk, they say, I'm, I'm all right as I,

Caroline Verdon:

I am, I decided, and I don't want to take that level of risk on.

Caroline Verdon:

And for other people they're undecided for a while, or they not

Caroline Verdon:

really engaging in decision making.

Caroline Verdon:

But by the end of it, they may have changed beyond all recognition from the

Caroline Verdon:

person that first walked through our doors and are in a position to make a decision.

Caroline Verdon:

And so the ones that they want to go ahead and we're happy for

Caroline Verdon:

them to go ahead, they're the ones that go ahead with surgery.

Caroline Verdon:

And I guess all outcomes within that.

Caroline Verdon:

are a success.

Caroline Verdon:

You know, if, if somebody has gone into it saying they want to have a transplant,

Caroline Verdon:

but then actually you've helped them look deeper and they've come to the conclusion

Caroline Verdon:

that, no, this isn't going to be for me.

Caroline Verdon:

That's the best outcome because it would have been awful had

Caroline Verdon:

they just pushed on through.

Caroline Verdon:

Dr Maggie Bellew: You can withdraw at any point and no one's going to mind really,

Caroline Verdon:

no one's going to mind because all that matters is the right decision for you.

Caroline Verdon:

And you can pull out at any point.

Caroline Verdon:

Dr Rachel Mandela: And quite often, we could be in the position of allying

Caroline Verdon:

ourselves with the patient and getting alongside them with perhaps a part of them

Caroline Verdon:

that's thinking, I don't want to do it.

Caroline Verdon:

You know, an example would be patients who perhaps have an amputation,

Caroline Verdon:

which has left them quite functional.

Caroline Verdon:

And that they would have to lose aspects of that function in

Caroline Verdon:

order to have a hand transplant and they may feel some pressure.

Caroline Verdon:

I ought to want it, you know, my hands would look more normal, for example.

Caroline Verdon:

Um, but actually deep down, they don't want to do it and they can

Caroline Verdon:

do what they need to do with what their amputation has left them with.

Caroline Verdon:

They can boil kettles and, and write and do things that, you know, they

Caroline Verdon:

really value and they wouldn't want to take the risk of the transplant

Caroline Verdon:

failing and then being left worse off.

Caroline Verdon:

So.

Caroline Verdon:

Our job is definitely not only to support people down the path of

Caroline Verdon:

transplant, it's to support people to find the path that's right for them.

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Dr Maggie Bellew: Yeah,

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Dr Rachel Mandela: we're not on commission.

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Dr Maggie Bellew: We're not trying to get more help.

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It's about, it's only ever about getting the right answer.

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So let's go then to the patients having had a

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surgery and where you step in then.

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Dr Rachel Mandela: At first we would be popping in every day to see how

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somebody is when they're in patients and that might be quite brief at first

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because as you can imagine people might be recovering from general anaesthetic

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on lots of pain relief, very tired.

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So.

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We're kind of touching base more than sitting down and having a long involved

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psychology session like Maggie might do.

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But I guess I'm mindful of a couple of factors when I'm going

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in to have those check ins.

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So we're looking out for signs of psychological rejection

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or distress about the hands.

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And as Maggie's said, we haven't seen any of that in the 10

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patients we've transplanted so far.

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But that doesn't mean we should stop looking for it because We've

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got a very small sample here.

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We've got 10 people.

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So, you know, we are going to see that at some point and we need to be picking it

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up early and supporting it, not letting it run unnoticed, if people are having

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those kinds of thoughts and feelings.

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Related to that, I often think of our patients as having this experience

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of being a bit like a racehorse, you know, that this, this, this special

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patient who gets all this attention.

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It's this very cutting edge technique.

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It's, it's all new and exciting.

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And the media are interested.

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And, and I always think how easy is it for you to say in the

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context of having all this resource poured into you, I feel awful.

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You know, I feel really terrible.

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I feel ill.

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I feel anxious.

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So for me, a really key role of the psychological input in the early

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stages is to normalise and support how difficult it might feel psychologically

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to go through that surgery, to go through all the revision surgeries and

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dressing changes and how exhausting it is, and being in hospital and

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away from your life and all of that.

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It's really important that patients have a space to verbalize that and to feel

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that it's normal, that it's expected, they don't have to hide it and put on a brave

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face and pretend that everything's fine.

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And I suppose that it's okay to feel

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grateful and thrilled and just a little bit crappy at the same time.

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These two things don't, don't aren't, aren't separate, they can go hand in hand.

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Dr Maggie Bellew: And we're, they're pre warned of all of this, so it shouldn't

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come as a huge shock, but there's nothing like actual experience in reality

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over the theory that I've given them.

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Yeah, yeah.

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And we also warn them that there's likely to be episodes of rejection

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during that first year, and that's again normal, it's normalized.

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And we, we used to panic first.

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patient, we panicked at the first signs of rejection.

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Again, you don't see it in kidneys.

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It's probably happening all the time with kidneys as well.

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These little flurries of rejection, physical rejection

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that is, immunological rejection.

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Um, we now know we can manage it and we make adjustments and

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it's, it's, it's controllable.

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But again, we have to warn that because that could be really frightening

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if they're thinking this is really unexpected and threatening, but

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actually it's, it's, it's normalized.

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It's normalized now.

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Dr Rachel Mandela: Yeah, so I kind of see my role as being a bit of a pressure

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valve, you know, somewhere where you can dump all that stuff and, and, you know,

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really get it out of your system and not have to put a brave face on things.

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And I think reflecting on that, I think that's been really important

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for many patients because that first period can be very rocky.

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You know, as the body gets used to the medication, people find themselves

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exhausted or ill all the time, or they're going into hospital with, you know,

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complications of the medication, so on.

Caroline Verdon:

Yeah.

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It's tough.

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It's, it's a bit of an uphill struggle.

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And so having someone to complain about it too, and to get it off your

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chest and to say, who can say this is normal, it will pass, you know, um, and

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be a listening ear and supportive ear.

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So that's it.

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That's a key role.

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So yeah, at first I'm going in every day or every other day.

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And then once the patient gets discharged, I'll be checking in with them once a

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week for the first months and just seeing how they're settling in, how they manage

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their first outing to a coffee shop.

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You know, how are they managing people's questions?

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How are they managing people looking at them?

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How's it, how is it juggling all these different appointments?

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So I'm, I'm, I'm, Figuring out whether there's anything that I need

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to support with and I'm filtering information to other team members that

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they may need to know about as well.

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And that, that kind of intensity of input gradually falls off, assuming

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that the person is, is feeling okay.

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It'll go down to kind of once a month, then once every three months and, and

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finally it'll be, But, but there's always the capacity for it to spike

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again and to go back to being more regular, if for any reason the person's

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struggling with something in particular.

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And I guess it certainly has happened that in the postoperative period, people

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find themselves more able to reflect on the experience of the limb loss

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in the first place, almost as if they had the lid on that so tightly that

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when they come out, come out of the initial, um, acute stage of recovering

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from the surgery, they're able to look back and say, Do you know what?

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I'm really starting to process some of the stuff around when I lost my limbs.

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And at that point, I wouldn't do direct therapeutic work with people at that

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time because I'm expecting to have a lifelong relationship with them.

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I'm in a position to be able to, you know, really monitor how someone is

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in terms of their mental health and to make onward referrals if needed.

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And I guess, just like physio and occupational therapy are there to

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ensure that the patient gets the best out of their mental health.

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transplant, so is psychology.

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So there could be psychological barriers to people feeling that

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they can go out and use their hands.

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They might have appearance related concerns about their scars.

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For example, they might be worried about attention from other people.

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They might be worried about field, fielding questions.

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So all of that is, is kind of grist for the mill.

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And I guess success is a long French loaf, isn't it?

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You know, we can have a successful outcome, but there still be

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barriers that we can support person to unblock, which would.

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Be even better for them.

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So it's about optimizing, I guess, rather than just a binary of

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whether it's successful or not.

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And then I guess the other thing that's really important to mention in terms

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of psychology follow up is, is helping people cope with rejection episodes.

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And we, we may be now as a team.

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confident about it.

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And I know Prath and Richard Baker, the transplant

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physician, are pretty confident.

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They know what to do.

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They don't panic when someone shows signs of immunological rejection.

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But that's not how it feels sometimes with a patient.

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It can be really, really scary.

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Um, and they will wonder, am I going to lose my hands?

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And, you know, the anxiety that can go along with that.

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However much reassurance people get.

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Sometimes that needs a bit of extra psychological support to help the

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person cope in that situation.

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And then, finally, I guess we have happily, so far, never had an experience

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of someone having a rejection that can't be dealt with medically and

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needing to have their hands amputated.

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That hasn't happened in the UK.

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Sadly, and none of us like to think about this, it is going to happen one day and

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when it does happen, it's going to have a psychological impact and our job is

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to support the person to manage that.

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And that is

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Dr Maggie Bellew: also something I discussed with them at the pre

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op assessment, is how they would manage, how they anticipate they'd

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feel if the ultimate downside happened and they lost the limb.

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We need to understand how they would likely approach that,

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how do they think they would.

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react to that situation.

Caroline Verdon:

Um, and some think, well, at least I've tried.

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Some say, well, I'll go again, try again.

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Others say, well, I'll just carry on as it was before the hand transplant.

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But, you know, they need to have at least given some thought to it beforehand.

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It can't all be done after the event.

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Preparing the mind to have thought through scenarios, whatever that may be.

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Possible eventuality has to be considered preoperatively.

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Can we, um, touch upon the, the donor aspect?

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I think, as a person who researches, I would really struggle to not try

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and Facebook and find the donor and try, and I can completely see why all

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of these actions would be unhealthy.

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But how do you get into the right mindset so that you're comfortable

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so that you don't feel the need to perhaps ask a million questions?

Caroline Verdon:

Dr Maggie Bellew: They, they know that it's an anonymous donation and

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that they're not going to be provided with the details of who it is.

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Um, it'd be quite hard for them to find out.

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If they wanted to write a letter thanking the donor, that can be facilitated,

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but again, it's all anonymous.

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So unless the donor family went public themselves and made it obvious that they

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donated, the recipient wouldn't know.

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And obviously, because there has been media coverage of our earlier

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transplants, the donor family are likely to know who's been the recipient.

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But we're at the stage now where it's not quite so clear.

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headline newsworthy.

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I guess what I'm getting at really is, what

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about the thought processes of who the donor might have been?

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So, what if the donor was a criminal?

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What if the hand had been used for negative purposes?

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Dr Maggie Bellew: You cannot specify, I do not want the hand

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of a criminal, or I don't want the hand of a this, that and the other.

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You know, that would be an absolute contraindication to proceeding,

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you cannot put those parameters on it, it is an anonymous donation.

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Dr Rachel Mandela: I guess the other thing to say about that is that if the

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recipient decides to write to the family who've donated the limb, the transplant

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nurse will then contact the family and say, there's been a letter come.

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from the recipient, would you like to receive it?

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And that's the same process the other way around.

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If the transplant nurses then say to the recipient, we have a letter from the

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family, would you like to receive it?

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That's part of the thinking for the person, because they might find things

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out that they wouldn't want to find.

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When somebody receives a It may have a wedding ring indentation.

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You know, patients have commented to me before, Oh, I know that the previous

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owner of these hands did physical work.

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I can see with the nails and the, you know, how the fingertips are rough.

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So, there is this real, Bond, I think, but certainly in my experience, and

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I think, again, this is testament to Maggie's really thorough preparation.

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It's, it's kind of a nice thing for the, for the recipient, you know, it touches

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them, they look at it and they're, they're connecting imaginatively with the

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previous owner and appreciating the gift.

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It's always had a, a kind of really grateful flavor, I think,

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when people talk about this stuff.

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Dr Maggie Bellew: I think appreciating the gift is a really good, succinct.

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We're putting that actually that is exactly what it is.

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They appreciate the gift that this person's given them

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coming up on our next Episode we meet Kim Smith now She lost

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all her limbs to sepsis and is currently on the waiting list for a hand transplant

Kim Smith:

Oh gosh my life before sepsis.

Kim Smith:

I was a busy working woman very independent I had two businesses.

Kim Smith:

I worked seven days a week I was constantly on the go then I decided that

Kim Smith:

I wanted to take it a little bit easier.

Kim Smith:

We bought a villa in Spain and we were out there on holiday

Kim Smith:

when I then developed sepsis.

Kim Smith:

So I ended up losing the businesses because I couldn't work.

Kim Smith:

Yeah, now I sit on my backside doing nothing all day.

Kim Smith:

I mean, I can't cut

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hair if I haven't got hands.

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And you can hear more from Kim in our next episode, which is out on Friday.

Caroline Verdon:

This podcast is an under the mast studio production.

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