Foundations for self-directed support in Scotland
Foundations for self-directed support in Scotland

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Foundations for self-directed support in Scotland

1.3 Understanding personalisation: the patient

Figure 1.4 Some people view ‘patient’ as a depersonalising and disempowering term. Is that always the case?

We start by looking at what it has meant to be 'a patient'.

One of the arguments for personalisation is that, to some extent, categorising people as ‘patients’ has led to people being depersonalised (Taylor, 1979). That is, people's wishes and requirements – despite the best intentions of professionals – have sometimes been ignored or dismissed. At times patients may be seen first as a body, a disease or a biological process and, only some time after that, as a person (Goodrich and Cornwell, 2008).

From the mid-nineteenth century onwards, hospitals and their organisation have been seen as a major focus of the delivery of health care. The status of medical practitioners grew with the growth of hospitals – at first located in cities and then through offshoots such as ‘cottage hospitals’ in rural areas.

Health is not just about hospitals. But the way in which hospitals were organised has hugely influenced relationships between patients and professionals like doctors and nurses. While most people in the UK value the NHS and the care they receive from the health service, one of the reasons that people may have felt (and sometimes still feel) failed by health services is because they are seen as impersonal and even depersonalising. One patient talked about feeling like a parcel and a consultant talked of patients as ‘pushed around like a piece of packaging’.

With every move, patients and relatives worried that the knowledge about them fell away. Arriving in a new environment, with a new group of staff, they would have to begin building relationships again from scratch. One very elderly patient was moved twice in the same night, once at 2 a.m. and then again at 5:30 a.m.

She was treated like a parcel. The junior doctor on one ward ordered tests but she moved before the results arrived so they were never received. In one of her moves, she was taken by a porter in a wheelchair to the door of one ward. The nurse in charge came to the door and barred the way, telling the porter: ‘You’re not bringing her in here.’ My mother felt anxious she would be lost inside the system.

(Goodrich and Cornwell, 2008, p. 10)

Activity 1.3 The experience of being a patient

(30 minutes)
Figure 1.5 Margaret Scally from Lennox Castle

The videos below feature Margaret Scally. Margaret was admitted to Waverley Park Home, an institution established for the care of 'defective and feeble minded children', when she was six years old. At the age of 16 she was transferred to a long-stay hospital called Lennox Castle where she lived until the early 1990s. She was interviewed about her experiences in Lennox Castle during the 1990s. More than ten years later she was interviewed again. This helps us to contrast her experience as a patient and as a non-patient, and between being a child and an adult in institutional care.

Download this video clip.Video player: Margaret Scally interviewed in 1996
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Transcript: Margaret Scally interviewed in 1996

Howard Mitchell
What did you think about the place?

Caption: Margaret Scally, Lennox Castle Resident 1968–1991, Interviewed in 1996

Margaret Scally
I gave it a try to see what like it was first.
Howard
Hmm, and what like was it?
Margaret
Some bad, some good days and some bad days.
Howard
Tell, tell me about your day to day routine? What time would you have to get up in the morning?
Margaret
You can get up between 7 and 8.
Howard
And what did you do after breakfast?
Margaret
We used to go to our job, our work. I used to work in the chiropodist’s.
Howard
And what did you do there?
Margaret
I used to answer phones and deliver letters to the wards.
Howard
Hmm, that was quite a responsible job.
Margaret
Hmm, I loved that job because I used to work with June [Another name in here – might be Thre for Theresa] Morris here.
Howard
What about other kinds of work? Did you ever work anywhere else?
Margaret
I worked in OT. I worked in the gardens. That’s about, the three jobs I worked.
Howard
How did you get on with the, the staff, the nurses?
Margaret
Some staff was good and some staff wasnae.
Howard
Did you have any sort of what you would call ‘friends’ among the staff?
Margaret
I had a lot of friends here. Some of them.
Howard
Among the staff, but amongst the nurses.
Margaret
I used to like Fiona Roberts and Bill McKewan, in our room. In the ward I used to be in.
Howard
When you worked, when you were working, Margaret, did you get paid at all?

Caption: Wages

Margaret
When I worked here we used to get a fiver and that was only for your pocket money and that was all.
Howard
Right. So you were working in the chiropodist or delivering?
Margaret
I used to answer phones and that.
Howard
And that was what you, what you got in a week was it?
Margaret
Hmm, on a Wednesday we used to get paid.
Howard
Right.
Margaret
They used to write the forms out on a Sunday and we used to get paid on a Wednesday here.
Howard
Hmm, what would you do with your money?
Margaret
Spend it as usual.
Howard
What on?
Margaret
Cigarettes. [Laughs ] Cigarettes and that or ginger.
Howard
Did you ever manage to save any?
Margaret
For all I got, it wasnae worth it.

Caption: Ward Living

Howard
You were in Villa 8. Can you describe the wards, how many beds or how close were the beds together?
Margaret
The beds were like just near one another. You could hardly get moving with them all.
Howard
Do you know how many beds were in the, the ward?
Margaret
There were sixteen on one side and sixteen on other side.
Howard
Hmm.
Margaret
About thirty-two.
Howard
There was, you wouldn’t have much privacy, then?
Margaret
No you didn’t have privacy, when you were living with thirty-two crowd.

Caption: Clothes

Howard
Where did your clothes come from if you’re thinking a way back to the, the beginning when you came into the hospitals?
Margaret
Sometimes my mum gave me clothes …
Howard
Hmm.
Margaret
… and sometimes you’d get clothes from the sewing [?] room.
Howard
Right. So did you have sort of underwear that was your own or was there?
Margaret
I used to wear the ones from here, the big ones, big bloomers and that we used to wear.
Howard
So did you, could you go and choose your own or whatever, or were they given to you?
Margaret
They were given to us.
Howard
Right, so would they be there for you in the morning?
Margaret
They used to go round and put the underwear and clothes and that on our beds.
Howard
And would that just be anybody’s at all in the ward?
Margaret
Anybody wore them.
Howard
What’s that, what, you said knickers, brassieres and vests as well.
Margaret
Vests and pants at the time.
Howard
Hmm, right, did you, did you never wear brassieres?
Margaret
No, it was always vests we wore.
Howard
Was it? What about outer clothes?
Margaret
Outer clothes? We used to wear … we used to get clothes every day like dresses or skirts or trousers and that.
Howard
Again, would that be your own or would that come from the …
Margaret
It came from the hospital.
Howard
Hmm, and did you never have a chance to choose your own sort of colours or …
Margaret
No, they just gave it out.
Howard
Hmm, did you, did you feel bad about that at all or did you wish you could choose some nice clothes?
Margaret
I would like to choose some, I felt bad, I would like to choose some nice clothes.
Howard
Hmm.
Margaret
No wearing the old-fashioned stuff.
Howard
Hmm.
Margaret
Everybody up the ward felt rotten about that. Why we had to wear everybody else’s clothes or the hospital clothes.
Howard
Hmm.

Caption: Punishment

Margaret
We used to all go down on our knees and do all the scrubbing when you were on punishment.
Howard
What would you describe as bad and what would be the reason for the punishment?
Margaret
’Cos when I was a wee toddler, I used to be wild … I was …
Howard
Wild, aye – and what would you do when you were wild?
Margaret
They used to put me to my room, into my bed.
Howard
What would you do? Would you try and run away or would you break a window or …?
Margaret
I wouldnae break a window. I’d run away if I was …
Howard
Aye, and did you, and did you run away at all?
Margaret
No, I wouldnae run away.
Howard
Did you never feel like it?
Margaret
I felt like doing it when I was here but I wouldnae … I just felt like running away.
Howard
Tell me again about this punishment you were on.
Margaret
The punishment. When I was in Villa 8 years ago we used to get short nightgowns, moleskins. We used to go down on my knees and sit out, do all the scrubbing and sit out in the corridor and used to have a punishment table for your meals and all that, and you weren’t allowed to sit inside with other crowd.
Howard
Hmm, and you said something about, um, scrubbing the floors with short moleskins?
Margaret
Hmm, the short nightgowns and moleskins.
Howard
Hmm, why, why was that?
Margaret
Just because we were in punishment.
Howard
Hmm, and would you, would you have no other clothes on?
Margaret
No, it was only the short nightgowns and moleskins we used to wear, and you used to get, you used to get five fags a day.
Howard
What, what did you think of that as a punishment?
Margaret
Didnae like it at all.
Howard
And that would be just for what, being cheeky or what?
Margaret
Mm-hmmm [As in ‘Yes’]. Didnae like it at all.
Howard
Were there other forms of punishment?
Margaret
No, that was the only one.
Howard
That was the only one that you got. Did you see any other forms of punishment?
Margaret
No, no, not when I was there. I didnae see any of them. I only saw the one.
Howard
Have you heard about anything else?
Margaret
No.

Caption: Drugs

Howard
Were you on any drugs at all?
Margaret
I was just on the same ones that I used to be.
Howard
Right, what’s that?
Margaret
That was largactyl I used to be on or melleril.
Howard
Right, did you feel them having an affect on you?
Margaret
Sometimes I used to, and we used to get paraldehyde jabs.
Howard
Right, and did you get paraldehyde?
Margaret
I got it. I used to get it that day I had a bad phone call.
Howard
Hmm, what was that?
Margaret
My brother died and that’s when I took a turn and they gave me some paraldehyde to calm me down.
Howard
What kind of turn was it?
Margaret
I’ve not had one for, it was – I’ve no had one for about two years.
Howard
Hmm.
Margaret
It’s because I get bad news.
Howard
Right.
Margaret
That was the last I had one.
Howard
Right, um, the largactyl and melleril, would that be everyday you were taking that?
Margaret
I used to get one at eight o’clock, twelve o’clock and six o’clock.
Howard
Hmm, and did you feel them having an affect on you?
Margaret
So – some used to, the melleril used to affect me when I used to sit outside in the sun.
Howard
What would happen?
Margaret
I burnt a lot with the sun. See if I sat outside long I would burn dead easy.
Howard
Hmm.
Margaret
Definitely the melleril affects you when you’re sitting outside.
Howard
And what, what, why were you taking largactyl and melleril?
Margaret
I’ve been on them all my life. I’ve been on the tablets since I was six years old and I’ve been on them since then, just to try and help me, to calm, to calm down and that.
Howard
And you feel that that’s something that you know, you need to do?
Margaret
Hmm. I’m only on one now.
Howard
Right.

Caption: Going out

Howard
Did you have a chance to go outside the hospital?
Margaret
Outside?
Howard
Say go down the village or into Glasgow?
Margaret
I used to tell the staff where I used to go.
Howard
Did you have a card or anything?
Margaret
No.
Howard
You just … so you were allowed just to …
Margaret
As long as I told them where I was going. They didnae bother.
Howard
Right, so you were well trusted …
Margaret
Hmm, well trusted to go and come back.
Howard
So did you go into Glasgow or what?
Margaret
I used to goan odd time I went into Glasgow or Krkintilloch when I had the money. That was the only thing. I used to go messages for the staff.

Caption: Relationships

Howard
Did you have a boyfriend when you were here?
Margaret
No, no, think about going with the men here …. oh, you’re up a gum tree. It was a nightmare here.
Howard
No decent men?
Margaret
No, I used to go in and get a cup of tea in the bowling green with Sammy Reid [?].
Howard
Er, but just a …
Margaret
… Friendly person he was.
Howard
Right, did you ever think about meeting a guy and getting married?
Margaret
No, no way. I wouldnae to get married. I didnae fancy any of the boys here.
Howard
Hmm.
End transcript: Margaret Scally interviewed in 1996
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Transcript: Margaret Scally, interviewed more than ten years later.

Howard
I’m going to ask you, just about what’s happening in your life just now. What are you working at?
Margaret
I’m working in Royston.
Howard
What’s Royston?
Margaret
A computer class I do.
Howard
And are there any other jobs that you’re doing?
Margaret
Partick Thistle football ground.
Howard
What, are you playing?
Margaret
No. I’m a security woman.
Howard
Security. What do you do?
Margaret
Anybody comes in, anybody that smokes, you’ve got to tell them to put their fags out and take their cans off them. If they come in with drink, they get sent home. We ban them altogether. You’re not supposed to drink when you’re watching. If anybody’s got a drink they get grounded.
Howard
Have you run into any problems doing the job?
Margaret
Not really.
Howard
Is it fun?
Margaret
Mm-hm. You get paid for it, that’s all I care about.
Howard
And how often do you do it?
Margaret
Just when there’s a game on. And that’s not this week, it’ll be next week before I work there again. That’s the stuff I wear.
Howard
See in the day when you’re going to work at that job, can you take me through your day. What time do you get up at in a morning?
Margaret
Six o’clock in the morning. I go down to McDonald’s and get my breakfast.
Howard
What do you get?
Margaret
I get scrambled egg, hash brown, a wee roll and a cup of coffee for £1.99.
Howard
Are you yourself?
Margaret
Yes.
Howard
Do you ever meet up with anybody there?
Margaret
I meet up with my pal, up at Roke Hill.
Howard
What about the people that live round the corner, in Firhill? Do you still see them at all?
Margaret
I see Hugh and Mary, and I see Phyllis. I see John. I see Derek and I don’t see Alan now, he’s a goner.
Howard
So where do you see them?
Margaret
I’m seven doors away from them.
Howard
So will you go and visit them?
Margaret
Yes. When they phone me, when they want me up.
Howard
Do they visit you?
Margaret
Mm-mm. Hugh comes round on a Monday. He gets me up at six o'clock in the morning.
Howard
Right. I’m not being cheeky, but is Hugh your boyfriend?
Margaret
No.
Howard
Is that a definite ‘No’?
Margaret
Definitely not. The men are out of the rota now.
Howard
What about in the past? Have you had boyfriends since you came out of hospital?
Margaret
I did have one boyfriend. And his mother asked me what age I was and I wouldn’t tell her. So I gave up. Finished with boyfriends now. Well, I like living on my own when I’m in myself, when I’m watching the telly. Paying my bills to get my shopping in. And go for a sleep.
Howard
I’ve wandered off your day-to-day routine. What do you do for lunch?
Margaret
I get myself a coffee. That’s all I have at dinner time.
Howard
And what time do you start the work at the football club?
Margaret
I’ve to be there for one o’clock. One o’clock until five.
Howard
How did you get that job at the football club?
Margaret
My big pal Josie.
Howard
So what did he do?
Margaret
He was going down too. He used to take tea and that down too. And the boss asked me to come in and see him. And that’s how I got that job.
Howard
How do you get on with the boss?
Margaret
Aye. I’m only down … they’re my football ground now. I’m only up the road from where I stay.
Howard
So do you support Partick Thistle now?
Margaret
Mm-hm.
Howard
When you go out in the evening, where do you go?
Margaret
Sometimes I go to the bingo. I’m a bingo fan. I used to be, and now I still go to that big bingo in Maryhill, it’s getting dear.
Howard
And you still best friends with Phyllis?
Margaret
I still see her. You know Phyllis?
Howard
When you see them, do you ever talk about past times in the Castle?
Margaret
No. I’m trying to get away from it.
Howard
Is it not nice some times to talk about things that might have been some way decent or pleasurable then?
Margaret
I try not to talk about Lennox Castle now.
Howard
What does it make you feel, when somebody does?
Margaret
It does hurt and that. I’ve been in there since I was six year old. And now I’m trying to get away from it.
Howard
When you came out of the hospital, where did you move to?
Margaret
Well the first place was White Lodge Street. The second place was Spencer Street. The third place was Firhill Road. And the fourth place was Murano Street.
Howard
Can you describe each of these places?
Margaret
White Lodge Street was in Maryhill.
Howard
And tell me what it was like inside, and who you were staying with?
Margaret
I was staying with Mary and Bert at the time. And I only shared with Mary and Bert. Then I was living in Spencer Street with six of us. Three lasses on one side and the three boys in that side. And I was sharing with six up at Firhill Road, where there were eight flats. Except for the bottom landing where there were two sharing. There was two living there, and a member of staff there.
Howard
Did the member of staff sleep there as well?
Margaret
Mm-hm.
Howard
So what was it like there?
Margaret
I was way up at the very top.
Howard
Was it good to share with all these people?
Margaret
Yes, it was alright. But you get used to it.
Howard
Did you want to move out?
Margaret
Mm-hm.
Howard
Why was that?
Margaret
I’d been used to living. I’ve been sharing with all that crowd all my life. So I was glad to move out.
Howard
Did you say to somebody ‘I’d like to try and get my own flat?’ Or did somebody say to you ‘We’ve got some place for you’.
Margaret
The Queens Cross phoned me to help me get my own flat.
Howard
And has that surprised you?
Margaret
Mm-hm.
Howard
Did they say, ‘This is your flat’? Or did they say, ‘We’d like to try and get a flat for you’?
Margaret
No. They got me a flat up at Murano Street, a way up the very top end, with views over the student village.
Howard
And what did you think the first time you saw it?
Margaret
The first time I went to see it, there was nothing in the house. Not even any furniture, or anything. And I had a key to let myself in, to go and try and stay overnight there.
Howard
And where did the furniture come from?
Margaret
Queens Cross.
Howard
Did you get to choose it?
Margaret
I picked the colours.
Howard
So you’re nice and comfy there. Do you think you’ll move anywhere else?
Margaret
No. I’m sticking to the bit I’ve got. I’m happy with that. Now I’m paying the bills for my flat. And paying the gas, electric, the phone bill and the TV licence, I wouldn’t move. This is the last time I was moving.
Howard
Does anybody come in to help you?
Margaret
Yes, when I need them.
Howard
How do you get them in?
Margaret
I’ve got to phone them.
Howard
And who do you phone?
Margaret
The project. I know I’m not getting any job today, so …
Howard
Have you got one special person, or are there a lot of people?
Margaret
Well there’s only – I like them all. They’re getting paid for it. So what‘s the difference?
Howard
What kind of things do you need help with?
Margaret
The housework. Yes. The housework.
Howard
So you can phone them up and ask them to come in and do what?
Margaret
Just to come in and spend time with me. They’re getting paid for it. It’s £25.50. That’s what they get off me on a Monday.
Howard
What about bills, money and all the rest of it?
Margaret
Oh I pay that. I pay the bills myself.
Howard
Do you get lonely at all?
Margaret
Sometimes. I’ve got to phone my pal to come round, when I’m sitting in the house. I phone my pal Hughie. I say, ‘Hughie, could you come round for a cuppa?’ ‘No bother, Margaret.’ You do get lonely when you’re in the house yourself.
Howard
Since you’ve come out of the hospital, have you made any new pals that are not connected with Lennox Castle?
Margaret
I’ve made a lot of. I used to pal about with big Kathy down the road. I never knew her at first. And then I’ve made a lot of friends up at where Hugh stays. So that’s the way.
Howard
Can you tell me three good things about staying in Lennox Castle?
Margaret
Try to think. There were some staff I liked and some I didn’t. And I used to work with the chiropodist, and I worked in the OT, and I worked in the gardens. So I’ve done my share.
Howard
So the work and stuff you liked. Did you not do musical stuff as well?
Margaret
No. I can’t remember.
Howard
Can you tell me what the worst things were about staying there?
Margaret
The worst things? The moleskins and the cigs – the five fags a day you’ve got to have as your rations. That’s been my nightmare.
Howard
You say you got so many cigarettes a day.
Margaret
You used to get five of them, five on a Monday. Ten on a Tuesday. Five on a Wednesday. Five on a Thursday. Five on a Friday and ten on a Saturday, and five on a Sunday. That was your rations.
Howard
Aye. Was that payment for the work that you did?
Margaret
Mm-hm.
Howard
When did you start smoking?
Margaret
I’ve smoked since I was six year old, and I’ve been smoking since then.
Howard
Are you thinking of giving up?
Margaret
I’ve tried, but it’s hard.
Howard
Who did you tell you wanted to leave?
Margaret
It was them that told us we’re moving. The one, somebody came up to see us in LennoxCastle, to tell us we’re moving out.
Howard
How did you feel then?
Margaret
Great. Better than stopping in there.
Howard
Was it not frightening at all?
Margaret
I was glad to get out.
Howard
Generally, generally, every day or every week, do you think you’re happy in your life?
Margaret
Mm-hm. Sometimes you get happy and sometimes you get sad.
Howard
What would make life better for you, if you had a wish? What would you wish for?
Margaret
My wish, to get more money.
Howard
That would make a difference.
Margaret
Aye.
End transcript: Margaret Scally, interviewed more than ten years later.
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Discussion

In the first video Margaret talked about how her care in hospital was organised. Although she was given medication there are hints that this was provided in order to make Margaret’s behaviour more manageable rather than to meet a definite health need. The discussion about ‘punishments’ raises many concerns,especially when you remember that she was a six year old child when she first moved into an institution. Perhaps it had more to do with orderly group living within an institution than health care?

In the second video you heard how, since she left the hospital, Margaret has taken (and sometimes been supported to take), increasing control over her life – where she lives, how she spends her time and who she spends it with. She also decides when to ask for support and how to use this support. These changes come over as quite dramatic, although we should not view life for Margaret in the community through rose-tinted glasses: there is still much to do to ensure that, as a society, we afford the same rights to children and adults with disabilities as other individuals in society.

When she was in institutional care Margaret was relatively powerless to influence how she lived her life in the face of the power of professionals. Of course it is true that during the twentieth century many people in the UK received a good service from medical and nursing staff in hospitals and the community; nevertheless, in Margaret’s account we can see direct evidence of some of the negative impacts of institutional life and of the potentially damaging impact of professional power.

Professional knowledge is important, but it is also very important not to exaggerate its significance. The Austrian philosopher, Ivan Illich, described the mid-twentieth century as the highpoint of what he called ‘The Age of Professions’ (Illich, 1977). He predicted that we would look back at the dominance of professions of this time as a harmful folly.

The next part of Section 1 will explore how the development of the social work and social care professions began to influence formal care relationships.

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