christie m s c c 131109

Gail Eva

What are the consequences of disability for patients with spinal cord compression?

What strategies do patients use to manage disability?

How do health care staff understand / respond to patients’ disability?

What support is offered to patients in managing disability? Is it useful?

Review of notes of the 78 MSCC

patients admitted July 2003 – June

2005, identifying:

disability-related problems

measures addressing these

9 in-depth interview-based case

studies

Each case made up of interviews with a patient, their carer(s), and a range of health care professionals – total of 58 interviews.

Alf, late 70sCa ProstateRetired technician

Ben, early 40sCa ThymusAcademic

Celia, mid 50sMyelomaCleaner and carer

Derek, early 70sCa ProstateRetired salesman

Eddie, early 80sEddie, early 80sCa ProstateCa ProstateRetired sailorRetired sailor

Frank, mid 50sCa BladderRetired accountant

Gill, mid 40sCa BreastProject manager

Hugh, early 80s Ca ProstateRetired academic

Ian, early 60sIan, early 60sCa Kidney Ca Kidney EngineerEngineer

The way that rehabilitation is placed on patients’ agenda.

The way that information passes from senior medical staff to rehabilitation staff.

A focus on discharge as the end-point of rehabilitation.

Patients’ response to disability.

Patients’ presentation of themselves and their circumstances, and staff’s responses to this.

Exploring boundaries

Concern about dependence

Reordering and restructuring

Wanting information

Asserting normality

Resisting a ‘disabled identity’

Claiming competence

Twin-tracking

Revising downwards

Finding possibilities

Demarcating safe spaces




Wanting information

I’m working out the boundaries:

seeing what I can and can’t do. I

tried to walk up to the doctors

the other day, and I couldn’t

make it.

I sit in the house and I feel fine,

and I think yes, I can do it. But

when I go out, after a hundred

meters I feel very weak.

That’s an awful thing to have to

surrender yourself to. You can’t

get around any more.

Asserting normality


Claiming competence




Wanting information

Asserting normality


Claiming competence

Twin-tracking

Revising downwards



I’ve had to give up my allotment,

which is sad – that was a good

break for me, winter digging,

that’s hard work. But now I can’t

stand and move without a frame. I

mean, I could hold on to a fork to

steady myself, but then I couldn’t

dig. But I have a few ambitions

that I will achieve. And the first

one – the essence of being

independent – is to go and hit a

golf ball. Proper swing, unaided,

followed by a hole.

Interview 1While I can still walk, it’s alright. I mean, if I had to be in a wheelchair, it would just be terrible.


Interview 2 (five months later)If we’d discussed this last November I would have been in tears. But now I can honestly say it’s an absolute joy to go out in the wheelchair. The wheelchair thing, it’s almost crept on me, and it turns out it’s not a big issue.


Interview 2 (five months later)If we’d discussed this last November I would have been in tears. But now I can honestly say it’s an absolute joy to go out in the wheelchair. The wheelchair thing, it’s almost crept on me, and it turns out it’s not a big issue.

…

I can still walk a bit and get into the chair. If I couldn’t get up stairs at all, or couldn’t get out of the seat… I can’t imagine what that might be like.




Wanting information

Asserting normality


Claiming competence

Twin-tracking

Revising downwards



The way that rehabilitation is placed on patients’ agenda.

The way that information passes from senior medical staff to rehabilitation staff.

A focus on discharge as the end-point of rehabilitation.

Patients’ response to disability.

Patients’ presentation of themselves and their circumstances, and staff’s responses to this.

Everything has been arranged,

from A to Z. I had the funeral

directors around, chose my coffin. I

love my husband very much, but I

love my Mum and Dad as well. And

it worried me – if I get buried here,

it’s too far for my parents to come

if they want to grieve and vice

versa, Graham. So I’ve spoken to

the vicar, and although I didn’t

want to get cremated, I’m going to

be cremated so there are two

caskets. One will be buried back

home and one will be buried here…

… I’ve got it all paid for. I’ve chosen

the hymns and the music I want

played. The vicar e-mailed me the

service and all the missing bits I

needed to fill in. And it’s all done,

it’s all done.

So if, God forbid, I take a turn for

the worse, today or tomorrow, the

i’s are dotted the t’s are crossed on

the service and what I want.

OT: Gill was remaining incredibly positive considering what was happening to her. My perception was that she was holding it together because that’s her personality. She’s a professional lady and she’s always taken a bright outlook on things as far as she can.


--ooOOoo--

Social Worker: She’s a very competent person, and she has overcome a lot of the problems herself, like finding somebody to provide the care that she wants. She’s very resourceful, she will not sit there feeling sorry for herself. She will work on ways of achieving what she wants.


--ooOOoo--

Social Worker: She’s a very competent person, and she has overcome a lot of the problems herself, like finding somebody to provide the care that she wants. She’s very resourceful, she will not sit there feeling sorry for herself. She will work on ways of achieving what she wants.

--ooOOoo--

Nurse: Gill’s a great initiator. She knows how to take things forward and she’s very clear about you don’t wait around for people to do stuff for you, you get on and do it yourself.

OT:

Gill went home adamant that she wanted to be

upstairs, which we completely went with because

that was her wish. The bath was highly important to

her and there was no way of having a bath

downstairs, and she felt that was a better option.

Three am, I’m wide awake and

thinking about going home and

what I’m going to do… how will I

get my rice pudding from the

kitchen to my table? Now, see, I’ve

got the problem solved. I’ve got a

tea trolley I made years ago. I’ll take

the back two casters off, add some

handles, there’s plenty of timber

down the shed. I’ll walk with my tea

trolley: push, stop, push, stop, like

so. I’m looking forward to going

home. It’ll be an adventure!

I had a happy childhood – we ran wild. I

would watch the blacksmith pump his

bellows when I was seven. I learned so

much then, that when I got a job at the

factory at fourteen I knew more than the

other young starters so I did really well.

Fortunately, everything is just fortunately, I

met a good gang of kids, they didn’t drink,

they were really good lads. The chaps at

work, I always met the best ones, I don’t

know why, but everything seemed to work

out right for me. My friend knew someone

in the Merchant Navy, helped me to get a

job there. I’ve been to almost every country

in the world. The blokes on the ship were

really good fellows, they took care of me.

OT:

When I first met him he was relatively realistic, saying he didn’t think that he

would cope at home as he was. I agreed that he needed to be independent with

his mobility before he could go home. But he didn’t really improve with

radiotherapy and he was getting more and more frustrated, maybe feeling like

we were handling him with kid gloves a little bit, saying you’re not ready to go

home. The more conversations I had with him, the less he seemed to understand

what we were getting at and that he wouldn’t be able to go back to how he was

originally. …

Eventually, we said you’ve got options: either go home as you are but agree not

to undertake any kitchen activities, or if you want to be independent, you’ll need

adaptations to the kitchen to allow you more space to manoeuvre. He said he just

needed a rail on the work surface, things that we thought weren’t so appropriate

because work surfaces aren’t meant for such weight bearing activities.

We had to be quite assertive with him to make

him understand where we were coming from and

why we were saying what we were saying and

that it wasn’t to take away his independence,

even though it was in the short term, we were

trying to do it so that long term he would maybe

have some rehabilitation at home as such.

We had to be quite assertive with him to make him understand

where we were coming from and why we were saying what we

were saying and that it wasn’t to take away his independence,

even though it was in the short term, we were trying to do it so

that long term he would maybe have some rehabilitation at home

as such.

Gill went home adamant that she wanted to be upstairs, which we

completely went with because that was her wish.

I asked him whether he wanted me to make a referral

to the [community services] for ongoing rehab at

home because I knew independence was really

important to him. He declined, which was a shame

really. I tried to explain that they could carry on the

work that we were doing in hospital but he still didn’t

want it. I was surprised actually, I really thought that

he’d be very keen on that.

The first time I used it, it was

the wrong move really,

because we went to Tesco and

Tesco was busy, and there I

was down, you know, in this

wheelchair and all of these

people, I just felt all these

people coming towards me.

And it was like – oh, I had no

control. It was terrifying,

absolutely terrifying and I just

wanted to get out.

Prioritising

Pacing

Planning

• What needs to be done in your day or week?

• What do you want to do?

• (What do others expect you to do?)

• How important is this activity to you?

• How much energy do these different activities use up?

• What can you eliminate or stop doing?

• What can you ask others to do for you?

Three Ps

Looking out for, and supporting, the ways in which patients are acknowledging and adapting to disability.

Identifying short-term, achievable goals and focussing on these.

Encouraging realism without contradicting patients’ preferred sense of self.

christie m s c c 131109

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