Publication
Health promotion and community care: the perceptions of users, purchasers and providers of community care services
Chapter three
users| active older people on a northern isle |
low income older people living at home - daycentre |
| 1man, 7 women |
2men, 6 women |
| ethnic elders, (Chinese) |
older people in a nursing home |
| 3men, 2 women |
2women, 1 man |
| frail older people, residential home |
older people in sheltered housing |
| 8women |
6women |
The groups reflected something of the differences in settingin which older people find themselves, as well as diversity amongst olderpeople in terms of frailty, gender ethnicity and income.
None of these groups was conducted in a person’s home,those people who were living in the community were interviewed in day care (twogroups) or a lunch club (one group) setting. The group from an island communityattended a lunch club which took place once a month, providing transport and ameal for people on several islands. The services reflected the flexibilityrequired in a remote community, not all those attending the club were olderpeople. The Chinese elders interviewed were physically and mentally able andattended a day centre where the kitchen, with social work funding, had beenconverted to cook Chinese food. The group was conducted through an interpreter.In the residential home we visited the majority of residents were aged over 80and the oldest participant was 92. The researcher was struck by the caring andopen attitudes of the staff and the frailty of residents.
The low income group took place in a day centre in a verydeprived area, although participants were those involved in helping out withthe centre activities and visiting other people on the scheme; some werethemselves in receipt of home care services. The three residents in the nursinghome knew each other well but were very private people. All had slight mobilityproblems. They were able to spend a lot of their time in the large individualrooms provided in the home which was some way out of town. There were perhapsonly another couple of residents in the home whom the manager of the homeconsidered able to participate in a discussion group. The group of peopleliving in sheltered housing were among the more independent of people livingthere, although all were frail and two very hard of hearing. Some people wereable to have disabled relatives (for example their adult children) living withthem in the complex. The complex was a beautiful new building on the top of ahill on the edge of a run-down urban area.
Older people felt that, to them, a good life involvedhealth, comfort, companionship and also privacy. They were more likely tomention spiritual needs than the other groups interviewed. An exchange from oneof the groups brings out these points.
older people (II)‘Good health
‘Good health
‘Good health, yea
‘And comfort, and
‘Need to thank God for everything he has givenyou’‘The welfare. If they have an interest in us,that’s important.’ (People in sheltered housing)
Older people told us that they had to accept the fact ofgrowing old, but acceptance did not necessarily mean that you felt old. Twoexamples of discussion illustrate this.
‘It is just old age and there is nothing you can doabout it.
‘I think most of us just try to tackle it in the bestway possible.
‘Just get on.
‘Get on and do not moan. Try not to seek out muchattention.’ (People living in residential home)
‘We never think about ageing
‘No, no
‘It’s just each year I am and there areappearances
‘As long as I’m happy, oh I may get old, ninetyone you know, I sometimes feel, yes, ninety one, I ‘m not boasting I justmean I don’t worry about wherever it is, Because if I feel I can keepgoing, lovely, and if not somebody else will have to keep me going
‘No I don’t ever think of your age, no, I neverthink of age, every time the doctor calls in
‘Sometimes you have to put in on a form or give thedate you were born’. (Island group)
Retaining as much independence for as long as possible wasvery important to how the older person felt. Older people living with otherswho were more dependent than themselves were made constantly aware of thedependency created by increasing physical frailty and dementia.
‘In this place you see so many people who have to betaken from a chair
‘Yes indeed
‘Into an invalid chair and then taken to the diningroom and then fed. When that happens to you and your independence has gone, youare not enjoying life in this world.’ (Residents in residentialhome)
Wherever they lived, barriers to getting out and to having achoice were common disabling factors. For example, the day centre was veryhighly valued by the Chinese elders because it was an opportunity to socialisewith other Chinese people, whereas staying at home was too quiet and thetelevision (in English) was not of interest to them. The group living at homealso valued being able to get out and about as an aspect of independence.
‘What do you mean when you say health?
‘Well, be able to get out and about
Out and about and walk and just do what you want todo.’ (People at home)
Despite the similarities of experiences there were constantreminders of the differences between individual preferences and needs. Somewanted companionship often, others valued their privacy very highly. A veryimportant difference among the experiences of the groups of older people wasbetween those who did still have family and friends alive and those who didnot. Some were just able to do much more for themselves than others and thisaffected their attitude to receiving care.
‘I’d feel useless if I couldn’t cook.I’d feel terrible. I was once a chef.
But I’d rather have it cooked,made for me.
‘I don’t feel terrible having mine cooked for me.I’m quite happy.’ (People in sheltered housing)
Income, and insecurity over how further service provisionwould be funded, was a particular issue in the residential care group, possiblyreflecting the impact of changes in policy and practice over funding andadmission to different levels of care.
‘No I think it is money worries that are the worsething....
‘They [social security] pay now but are they alwaysgoing to pay?’
Health and quality of life were key issues for older people.Their own level of health, mental and physical, would determine how far theycould retain the independence they prized. The experiences of older people in awide variety of settings suggested that, while they accepted increasinglimitations with age, they did not think age itself was all-determining, andthey knew that more could be done to enable them to stay mobile and mentallyactive and to be able to get out and about for as long as possible.
people with mental health problems| people with mental health problems |
people with mental health problems |
| 4men, 4 women |
4men, 4 women |
Both groups for people with mental health problems tookplace in day centre settings, one in a rural, and one in an island setting.Participants included people who had experienced serious mental health problemsand had been in hospital.
The experience of having had mental health problems hadcaused isolation in many ways and contact with other people was, therefore, thefirst thing that came to mind in the two groups when they were asked about‘a good life’. One person defined this as, ‘other people, Ithink. Being able to mix with other people.’ The greatest barrier to agood life, again identified by both groups, was the attitudes of other peopleand their lack of understanding of mental health problems. ‘Theydon’t understand the mental illness aspect. ‘They think you should beable to do something about it.’ This resulted in people with mentalhealth problems being denied the right to ordinary feelings and experiences.‘They seem to think that intelligence is tied in with mental health.‘And the thing that gets me is, because you are mentally ill you haveabsolutely no sense of humour, oh no.’ Misunderstanding of mentalillness has very real consequences, - increasing distance between people andtheir families, for example, and preventing access to employment.‘Again I would say, public awareness, acceptance and a chance to bevalued and appreciated as a person, I think, however that is expressed, whetherthat’s in a job or a voluntary job - but just not to be seen as a mentallyill person, but as a complete person.’
These experiences exacerbate feelings of insecurity inpeople with mental health problems and make it harder for them to recoverself-confidence. ‘Their attitudes sort of reinforce theself-questioning that you have. Because personally it makes me anxious, becauseI know they are anxious. And so it’s like you’ve to prove yourselfall the time that you are OK.’ Supportive environments, which allowfor difference were felt to be needed in the work place and community, ifpeople with mental health problems were to be enabled to make a contribution tosociety.
‘Well you’d like something, if you had thesupport, you know. Because you’re not always 100% every day and most daysyou’re feeling pretty rough and it’s hard to concentrate on a job. Ifyou had support, ken, if you had a place to go that were giving you certaintypes of job to do in a supportive environment then I think everybody would goto it.’
‘Well, I’d like to be, within the confines,within the bounds of my illness, able to contribute to life by doing a good joband having a good future.’
People with mental health problems had encountered a lack ofawareness of their needs and also of their capabilities. This was especiallydisabling because it hampered their own struggle to rebuild shatteredself-confidence. Other people’s misunderstanding of what it is like tohave mental health problems could deny them the rights to ordinary emotions andalso presented structural barriers, excluding them from meaningful activities.
people with learning disabilities| adults with learning disabilities |
young people (14/15 yrs) with specialneeds |
| 2women, 2 men |
4male, 4 female |
The adults that we interviewed had experienced life in ahospital setting, but were now living in the community. Their social worker waspresent during the group. The young people attended a special school. They wereinterviewed during the day with a helper (not a teacher) present. There was avery wide range of needs within the group of young people.
The former hospital residents said that they were verypleased to have come out of the institution where they felt as if they had beentreated like children, a ‘nursery for adults.’ ‘But in therepeople are really adults. You don’t need to treat them likewains.’ A former resident of a different hospital wanted to see theremaining residents discharged. ‘I would rather see them out as well,get on with their lives, they’re just the same as her, they need to getout more than sitting in the ward for 24 hours, they should get out and get onwith their lives.’
Independence in the community meant being able to get outand about, on a bus or to the shops, for example, and to eat what you wanted.The social worker was providing support, for example, in dealing with benefits,and the community mental health nurse was also a lifeline.
Money and a job were the first things that came to mind forthe young people when asked about a good life. Money would help them fulfilltheir expectations of having holidays, a car and a house. Their experience wasperhaps reflected in the stress they placed on privacy and independence.‘Just having my own space.’
Some did not tell their friends that they attended theschool because they were afraid of being labeled ‘spastic’, but forothers it was not a problem to mix with children from other schools.
‘Nobody knows outside I keep it a secret.
‘Why do you keep it a secret?
‘Because people slag me off.’
For the adults previously resident in hospital, living inthe community had widened their opportunities. The support that they receivedwas essential to them being able to benefit from living in the community. Theyoung people had been partly separated from the mainstream during theirschooling. They were receiving support and were perhaps not fully aware of thebarriers that might exist to fulfilling their expectations.
people with physical disabilities (I)| people with disabilities |
adults with physical disability |
| 3men, 3 women |
7women, 1 man |
| adults with physical disability |
|
| 3men, 2 women |
|
These groups embraced a very wide range of needs and eachwas held in a distinctive setting. The first, held in a resource centre fordisabled people, included people in middle years, most with a physicaldisability and some with learning difficulties. The second took place in aprivate house in a village in a rural area. The people were not an existing‘group’, but had met informally. The third group took place in aspecially adapted housing complex. Not everyone in the group lived there, mostof the participants did know each other well enough to say ‘hello’.This group ranged in age from 20 to mid 50s.
Disabled people wanted the right to the same life as theirable-bodied peers. This meant being in control, able to do thingsspontaneously, without vast amounts of pre-planning and being able to get wherethey wanted to go at the time of their choice. ‘Being in control.Being able to be spontaneous.’ ‘How do you want to be treated?‘As equals ‘Just as equals.’
‘They have a group for disabled people, Theydon’t have a group for healthy people do they? We don’t have aHealthy Person’s Recreational Centre like this. But I mean we don’tjust distinguish against healthy people. We only distinguish disabledpeople.’
The attitudes and behaviour of others often devalued peoplewith disabilities.
‘They think you’re stupid, yes.
‘They have a very minimal level of expectation
‘They talk down to you
‘They undervalue you, and underestimate you.
‘They actually talk to you on a different level, - Iwalk on sticks, she’s in a chair, - people treat me differently, standingup - than sitting down
‘I remember when I was in wheel chair, and I waspregnant - you should have seen the looks I got! I had to open my coat to showI wasn’t shop lifting!’ [laughter].
‘The trouble I find with my condition is its sovariable: sometimes I’ll walk; and other times I don’t walk at all.Therefore I get called an actress. You know, they think I’m putting it on,you know?’
‘But I used to find when I used to go in a wheelchair,you know, the people, - instead of asking me who I was, would ask whoever waspushing you; as though you were stupid -
‘Or you’re in a shop, paying for something, andthe poor soul behind you, gets asked to deal with it [Yes!] and of course,you’re not accompanied.’ [laughter]
people with physical disabilities (II)‘If you’re shopping on your own, andthere’s a big queue behind, you hear people say, "Folks like hershouldn’t go out on her own shopping." (Yes) You hear it!’
Like the people who had experienced mental health problems,people with physical disabilities found that other people’s assumptionsabout them even extended to how they should react and feel.
‘Other people that don't have any connection with anydisabilities at all create barriers for themselves and they create this tragicmodel of a person with a disability, no matter what the disability is.’
Disabling environments, and services that failed to enablepeople, restricted their quality of life. Community care assessments, forexample, perpetuated a negative view.
‘Instead of saying, "What can’t youdo?" it should be rephrased, - I’ve been doing homework this morning- as to what does your environment, local transport, lack of services,employment, education facilities, - prevent you from doing. Then you would notfeel that all the situations we are in is our fault.’
‘Disabled people are no supposed to go out after sixo’clock at night’ was a comment made in several groups. It wasgraphically illustrated by the story of meeting disabled people from a returntrain journey from Glasgow to Stonehaven.
‘So I got up in time to the station and it pulls in andI thought, where is everybody? Nobody about. I was out at the signal box says,"train coming up from Glasgow?" "Aye, aye, aye". I says"Where's the, the ramp for the wheelchairs?" "Whatwheelchairs?" I says, "Oh, there's wheelchairs on the train. It's allbeen booked and planned for months". "I dunno, locked up". After6 o'clock it gets locked up. I said, "Well, how the hell are they going toget off? How are they going to get off?" "I dunno." I says,"Where will it come in?" " The other platform". So I jumpedin the car, zoomed over the platform and I just stopped the car and the train'ssitting there and I see the doors open and the wheelchair sticking out. So Igot (name) on the platform, the train tries to take off. So I banged on thedriver's window and I said, "Excuse me, would you care stopping aminute", or words very much to that effect. And I said, "You've threewheelchairs on the train." "No, I haven't", he says, "Noway, there's no room for them on the train" he says. "They're bloodyon the train, man! They're hanging out the door, trying to get off the trainand there's no ramp".(laughter) "There's no 3 wheelchairs on thetrain." I says "Come here, come and have a look if you don't believeme". I said "I'll put a tenner on it, if you like". So I wasback and the guard comes up, "Oh, sorry, I forgot about everybody. I mean,see, the problem is we’re not allowed to lift people off", I said,"Well, where's the ramp?" "Oh, it's locked up now, innit?"I says "Well, you're just going to have to bloody lift them, orwhat?" "Well", he says, "we could take them up to Aberdeen,get the ramp there" he says. "Take them off the train, get a coupleof guys, put them back on a different train, bring down the train downspecially with a ramp from Aberdeen and let them off the ramp up atStonehaven".’
Disabled people feel that they had a right to be recognisedas contributors to society and not as dependents.
‘We do want something to offer, you know. We haveexpertise in some things, you know. Just because maybe legs don’t work orsomething, it doesn’t mean we can’t help in other ways.’
‘People forget that although we are disabled,we’re still carers as well.’
People with physical disabilities had very clear views aboutthe disabling factors that limited their access to a decent quality of life.They wanted to be treated as equals and yet commonly found that people treatedthem as stupid or ignored them. Many organisations and services failed to workin ways that included disabled people and so, disabled people felt that societywas deprived of the positive contribution that disabled people could make.
people with sensory impairments| peoplewith visual impairments |
| 4 men, 4women |
These were people who used a social work building wherethere was technology, such as scanners, to assist reading of texts, available.The groups ranged in age from their twenties to mid fifties and included peoplewho had been blind from birth and people who had become sight impaired in laterlife.
There were many similarities between the experiences ofpeople in this group and those of others we interviewed with a disability,suggesting that all were experiencing common social barriers. ‘I meanif folk would just take you as being an individual with a disability ratherthan a disabled individual.’
People with sight impairments also experienced particularissues. ‘Going through school and things like that, you always thoughtthat people were laughing behind your back and they were not.’ It didnot occur to other people that they might not be able to see, for example toread the number on a bus. ‘You do not want to be wearing a cap, saying"I am blind, I cannot see, can you read this to me?"’
‘I think that one good thing about it, is that youdo not see people's faces, you do not see their reactions, I think to myself,oh well you do not see the face they are making so that is a good thing, itdoes not hurt you so much.’
People with sight impairment found that they could beprevented from taking part in leisure activities because they were perceived asa risk.
‘Like people will no take you on board, I mean, myfavourite one is well like a football match you are classed as fire hazard. Youfeel like saying excuse me but if this place fills with smoke, no one can seeand then I would be the first to know the way to the door.’
On the other hand it was possible to make other peopleaware.
‘Where I live is quite good there is a small localgym which I have been going to for about six years and the reason it was keptopen for me was because me and the other two blokes kept going, because theywere going to shut it down. I have been doing that for six years now, we gotgrants to buy new equipment and it is going good and there is up to eightmembers in it, for me it is brilliant and it is quite big and I have been goingquite a while and the boys ask me where I want the equipment, so that I knowwhere it is, there is posters up to say that any equipment is to be put by andno waste lying about the floor, for me, for my sake so I do not fall over. Forme it is great and it is only up the road.’
People with visual impairment experienced barriers whichthey shared with other disabled people, notably in public attitudes and inservices that failed to provide access for everyone in the community. Theinvisibility of their own disability to others exposed insensitive practices.
people with head injuries| peoplewith head injuries |
| 5 men |
This group consisted of five young men in their earlytwenties, mostly living with their families in a peripheral urban area. Threehad their head injury as a result of a violent attack. They were members of agroup set up by a social worker who had recognised their need for support.
The young men explained that, after their injury, they hadbeen isolated by approaches to rehabilitation but in fact there were a lot ofdifferences in their injuries. The way the injury had happened gave themparticular issues to deal with.
‘The way they dealt with the head injured people was,they isolated them. Took the families aside, talked to the families about whatto expect and the people that had in the head injuries in with people worsethan themselves - and gave them flower arranging’
‘You need one-to-one with somebody..’coswe’re all different. Everybody’s different and your injuries aredifferent as well. And you need to be able to trust somebody. I lost trust ineverybody you know
‘Why did you lose trust?
‘Because, well, I found out that it was my pal thatassaulted us.’
They had experienced loss of control, for example, having tolive back at home and be cared for by parents and loss of confidence.
‘Aye, there’s an awful lot of bitterness, I think.And as far as their families concerned, in my case anyway, I didnae like myfamily caring for me as much and all. I mean I lived away from me ma up inSwansea for six years. And I came back up from Wales. I loved that life on meown. Well, I didn’t need my family. I was, like, an independent guywhen I came back up. And all of a sudden I’ve got - my mum and my dad tellme not to do this and not to do that - ... but that’s just them caring forus. And that makes you real bitter towards your family and all.’
A head injury could alter their personality, with problemssuch as loss of memory or epilepsy. To the experience of shock was addedmisunderstanding and the loss of friendships. The effects of medication couldbe another reason for the person feeling and behaving differently from before.
‘Well, before the accident I was, as I say, anoutgoing sort of person.
So I was out every weekend. After the accident I wasjust a house mouse.
‘That’s the way I am too. Exactly
‘But at the start I was trying to get myself out again.I was trying to get back out in company, but then I was frightened of myselfand, because of all the drugs, I was clamming up all the time, I wisnaespeaking. And I wisnae acting the way I usually acted -
‘That was the total opposite frae me. See before myaccident I used to be dead quiet and that and see, after the accident I’dcome in, "All right" you know, shouting. Everybody’s not used tosee me like that ‘cos I was quiet. But after my accident I just seemedfull of talk all the time, wanting to talk with anybody.’
‘So I’ve split up frae friends I had before myaccident as well. Think that’s most of us have done the same.’
The young men in the group were trying to come to terms withthe fact that their conditions were chronic. Some had experienced problemstrying to get work because they were seen as a risk. They also felt unsafethemselves because of the tough culture of the area in which they still lived.
‘You cannae socialise very much in (name of area).Oh you can socialise but -
‘It’s clans
‘It’s people, it’s people
‘It’s transport
‘Clans and that wee groups
‘Ken
‘And it’s an aggressive place, it’s anaggressive place as well
‘Aye, they think they prove, like most young men in(name of place) now, I think they’ve got to prove a point. You know what Imean? You think they’re all better, mad in front of this gang, you knowwhat I mean, it’s all stupid. They’ve nae brains. All they do, whenyou go out, you’ve got a good chance of getting into a fight. Even ifyou’re, see if you go out yourself and you’re not bothering naebody,there’s a good chance you’ll get into a fight here, because of theway it is. I see they people all those days, wanting a fight and take drugs,that’s more or less what it’s all about.’
The young men with head injuries had experienced the shockof a sudden disability. Their injury and the reactions of other people to them,made them particularly vulnerable to withdrawing from society and, added tothat, they faced particular health issues and the usual disabling barriers inthe workplace. This was an unusual support group which seemed to respond to anunmet need. The culture of the area continued to make them feel unsafe, evenafter their injuries. This broadens the agenda considerably from traditionalapproaches to rehabilitation to take on issues of social and economicregeneration.
homeless people with alcohol problems| homeless people with alcoholproblems |
| 4 men |
This group was conducted in a haze of smoke and alcohol andone of the participants was very aggressive. It took place in a long-standingcentre that received health and social work funding. Cheap meals were provided.The place gave the impression that it provided refuge for people who wererejected by all other services.
The men in the group were very self aware and also aware ofhow other people perceived them. They experienced life as a ‘downwardspiral’ and felt that there was no hope of climbing back to any sort oflife from where they were, that is, homeless and drinking. ‘Mosthomeless people they’ve nae future. That’s why they drinkcontinuously until their health’s wrecked and everything. You stopeating.’
Some felt as if their lives were controlled and the bridgeback to being able, and being seen to be able, to maintain a tenancy, seemedout of reach.
‘It seems that we’re not able tolook after a house. I’ve brought a family up, own family and everythingwhere I brought them up. I could keep a hoos, know what I mean? But the wayI’m getting just now, I’m fifty odd years of age you know, it’sgoing that way with my life being controlled that much, it’s gettingcontrolled just now, I couldna run a house now. Likes of (name), he gave me aform ...’
The men felt that they experienced no quality of life intheir present situation and that it felt impossible for them to achieve anyindependence.
‘Every man’s a product of the environment andthe environment we’re living in up there is unbearable, unbearable,Christ. Everybody drinks to excess. If a man’s given a chance, if he canmebbe prove himself to get a house, things will change you know
‘Is that because you’ll be able to do things for yourself?
‘Exactly
‘Exactly.’
These four homeless men with alcohol problems saw a home asthe only way that they would be able to take back control of their lives, yetthey felt that, in the environment and personal situations they were in, therewas little hope of that change coming about.
people who are HIV positive| people whoare HIV positive |
| 6 men |
These were members of an existing group and were supportiveto each other in discussion. They came from different backgrounds and varied inthe length of time they had known their HIV positive diagnosis Quality of lifewas highly valued.
‘I think quality. Quality.
‘What do you mean by quality?
Well with HIV and Aids, quality in the sense thatyou’re living a reasonably good life where you can be as independent aspossible. Not dependent twenty-four hours a day. Its the quality, rather thanthe quantity of life I think is important, for me anyway.’
While they valued independence, some also recognised that itcould be a trap to isolate themselves from practical and emotional support thatwas needed.
‘I think independence is even more important inthis situation because there are so many situations in which you are dependenton people. You are attending hospital, visits, appointments and stuff, soyou’ve got bits of your life you would rather not be doing anyway. So thefreedom to do what you want to do when you are fit to do it is frightfullyimportant.
‘What about other people?
‘Well, it’s just like what we’ve been saying:independence to me would be as independent as I can be. And until that I needsomething. Well eventually I may have to become more and more dependent.
‘Some people become so independent though they isolatethemselves. I was one of them. You isolate yourself. You don’t feelcomfortable talking to anyone - you’re frightened in case something slipsout you shouldn’t say or you’re looking a bit down and becomingparanoid about it. I think you can be too independent.’
The group described the problems of negotiating the helpthey were entitled to when they had a ‘hidden’ illness. They feltthat they were denied help they should have received because they did notnecessarily look ill or fit people’s image of how someone with HIV shouldbe. They stressed the individual progression of the illness and how itsdifferent stages were not well understood by others.
‘They’ve got this in their head, you go down tosocial security for an interview, you look OK, you look physically OK, not allof them, but this has happened, and so they kind of reject your claim becauseyou look OK.’
The psychological burden of having HIV could not be overestimated.
‘Oh I wouldn’t wish it on anybody, it justcomes along and kicks your head in, it really does. Mental torturesometimes.’ ‘Community’, for this group, was found amongst thoseclose to them who offered support.
‘But if you ask me what community is, it’s(name of support group), the people who live in my street, in my area and thepeople I regularly see and my family. That’s part of my community and Ifeel very supported by my community. I don’t know but perhaps not so muchby the gay centre of it, with a few exceptions.’
The men who were HIV positive were dealing with a highlyvariable illness and their experience was both physical and psychological. Theywanted support that enabled them to remain independent but without isolatingthem. People had an image of what the disease should be like and they felt thatthis could stand in the way of some people getting appropriate support at theright time. Some perceived a danger that prejudice could be reinforced bypolicy.
summaryThe experiences of a wide range of community care users andthe aspects of ‘a good life’ which they valued showed that they gavea high priority to quality of life, particularly independence, but raisedquestions as to whether the importance of this is really carried through intoservices. Being in the community was not by itself sufficient to ensure thatpeople were enabled to be as independent as possible. All user groups valuedvery highly the possibility of remaining independent for as long or as much aspossible, yet they felt that they often had to fight for this. Misunderstandingand prejudice were experienced as major barriers to getting on with a normallife. The barriers were also structural. People felt themselves excluded fromaccess to the workplace, or even from leisure opportunities, by disablingenvironments. Thus they felt that they were in many ways prevented from makingthe constructive social contribution that they could offer. Their experiencessuggest the need to develop a broad health promotion agenda within communitycare to promote the well-being of users. Health for All principles andcommunity development strategies could be considered also in order to help makequality of life a reality for people who receive community care.
carers (I)We interviewed eight groups of carers spread across the fivestudy areas. The groups were selected to reflect different experiences ofcaring, not only in respect of the needs of the person being cared for, butalso in terms of the carers themselves, their age, gender and whether theylived in an urban or rural area. Most, but not all, lived with the person beingcared for. The groups were recruited through carers’ centres, voluntarysector agencies or projects. Many of their experiences of caring werestructured by the services available and will be addressed in later sections ofthis chapter. There are very strong common themes given in the accounts ofcaring and the groups are therefore summarised together here. Where anexperience highlights a particular feature of caring for someone with aparticular illness or being a carer in a particular situation, that ishighlighted.
| carers |
carers of older people |
| 9 women, 1 man |
5 women |
| carers of people withdementia |
carers of people withdementia |
| 2 men, 4 women |
2 men, 6 women |
| families of children withspecial needs |
palliative care (carers ofpeople with HIV/Aids) |
| 2 women |
4 men, 2 women |
| men who care, deprivedarea |
young carers |
| 9 men |
1 male, 1 female |
For the person being cared for, carers wanted the bestpossible quality of life, but they often found that services, in their view,were basic and that their own life too was about survival, not quality.
‘Quality of life is everything.That’s for the person you’re caring for as well as for yourself. Andto get quality of life there’s got to be services there, which issomething, ken, care in the community didna take on board before they startedit.’
‘Quite a lot of carers find just nowthough, quality of life is actually survival, on the bare minimum.’
All emphasised that caring was a twenty-four hour job andthat respite was the essential need. The responsibility was constant, even ifyou managed to get out of the house. There was a worry what would happen if thecarer became ill. ‘A carer’s eyes are always on the clock.’ Thedemands of caring could damage social life and health and, if unrelieved, couldcreate very difficult feelings of resentment and guilt. When one member offamily was disabled, that whole family felt themselves to be disabled bysociety.
‘You’re not part of society, yourfriends have disowned you because they’ve got able children andyou’ve become a member of the disabled society.
‘My house is actually like an institution ....’
‘‘I’m racked with guilt when he’s awaybecause I know he’s not enjoying it and I know that when he comes backI’m the only one he’s got to take it out on.’
carers (II)‘One and a half years younger than myhusband, but the gap is narrowing!’
Caring for a person with dementia imposed particularstrains, both in experiencing the loss of that person’s identity, indealing with agitation, memory loss and constant, repeated demands and inmanaging the care of someone who was increasingly unable to co-operate.‘But my mother is not the same mother I remember years ago.’
‘But if you try and do anything for her - puttingher clothes on, she’s fighting you, and you’re not getting any helpand it’s making it twice as hard for you to cope. So its quite exhaustingyou know.’
For some the experience of caring had crept up on them,others had taken a definite decision to care. In both cases services were stillnecessary to support the person who had taken on that responsibility. Help didnot necessarily come unless you sought it actively.
‘Responsibility grew on my shoulders without merealising it.’
‘Even though I wanted the responsibility I still needsomebody in the family to help me.’
‘Not only do you have to look after your child but youactually have to shout at persons before you get things done.’
There were many different relationships in the groupsbetween the carers and the person cared for. People were caring for parents,spouses, girlfriends and some were acting as buddies or informal voluntarycarers. This sometimes made a qualitative difference to the experience.
‘There is a big distinction between looking after yourspouse, and looking after your parent...with your husband or your wife itsdifferent, I mean its part of you.
‘There is a big difference because you feel it everymoment of the day and when he says to me ‘why am I like this?’, youknow?’
Differences in age and gender affected the caringexperience. An older person might find their own health particularlythreatened, whereas a younger person might not be so easily identified ashaving needs.
‘I am seventy and I feel my life has gone, it isgone.’
‘Well I feel, maybe I am wrong, because I am youngerthe doctor does not give me advice or say anything, he said your mum has gotdementia and that is it now unless I tackle it, that is far as it gets, shegives me aspirin more aspirin. I do not seem to get the support from the doctorthat the other man got.’
The teenage brother and sister we spoke to, who were caringfor a parent and a grandparent, were having their family relationships andtheir childhood affected by the pressures of caring. They wanted to be able toget out as a family.
‘Sometimes its hard to revise because you’vegot speaking, listening and then a writing test and if you’ve got mumwanting you to do something and if you’ve got nan wanting..’
‘We still have to do things for our mum (on holiday),but when we went up to Oban in the Easter holidays, this is our story, in theEaster holidays we went up to Oban for like half a week and we were at (name ofplace) for something like three days and mum was only out of her bed for oneday, so we weren’t able to go out places and do things, but the day shewas up we went to the Sea Life Centre.’
If the carer felt that the person they cared for was notreceiving appropriate services this made them feel much worse. One man hadcared for his girlfriend, who had a chronic disease for over many years,eventually giving up his job, before her death.
summary‘All the time it was lack of information, lack ofplaces to go, lack of the right medications. Local doctors haven’t got theright information half the time.’
Carers might have freely chosen to care, but many felt theyexperienced little choice in terms of the services available to the person theycared for or the opportunities they had to carry on with their own lives. Thestress of caring could undermine the physical and emotional health of thecarer. People needed practical support in the form of respite and resources,and they also needed understanding from others of the particular needs of theperson they were caring for.
NeedsThis section explores further the components thatcontributed to the desired quality of life described by users and carers, thatis the aspects that could promote their well-being. The examples givenillustrate why the felt needs of users and carers are relevant to the goals ofhealth promotion and community care. Needs is a contested concept. We use itfor those universal conditions without which people can neither meet their ownlife goals nor be fully participating members of society. Within a concept ofsocial justice these needs could therefore be regarded as rights. Needs maytake different forms and have different priorities for groups and individuals,but the fundamental components are all important for quality of life. Alllevels of need, the material, the social and emotional and those at thesocietal and political level would need to be satisfied for an inclusivesociety. In the third section of this chapter we will be reviewing the barriersthat people encountered and the practical changes that they felt could satisfythe needs identified.
material needsIt was the homeless group that spoke most eloquently of theimportance of having a house. Not having a home of their own increased theirsense of being shunned and being left without hope.
'No place to go....No where else to go. If you drink on thestreets there's a chance of getting lifted, or if you get a decent placementyou'll probably be sent away.'
For all those who spoke about it, where you stayed was aboutmore than shelter, essential as this was. Living in an area you knew or nearfriends or family could make all the difference as to whether someone felt 'athome' or not.
Older people and their carers were conscious of theimportance of one's own home to identity and a sense of autonomy. Whereas,those living in a care home had experienced the loss of that home and knew whatit was like to live in a more public environment with the opportunity to meetnew friends but also, 'even people you don't want to meet.'
'My mother has no option but to stay with us, we lost myfather last year and my mother had gone to her house when she was six years old, and if you take my mother out of that house you may as well put a gunto her head.'
'What's important about your own home?
'You can go home
'You can do what you like, go out when you want, meet whoyou want
'Go to bingo, go to dancing
'Invite in who you want.'
A place to say therefore involved issues of choice andindependence as well as of shelter.
moneyOnly some of the user groups mentioned money directly,although from all they said, access to resources was an important issue. Moneywas about having the resources to do things. 'If you have wealth, you havecontrol of your environment, you will be able to pay for education and back upservices and then you will contribute to the economy.'
One group that spoke particularly about poverty was that ina residential care home. One woman said she could not afford to take part inactivities such as outside trips.
'I would like to go out more, but that is nottheir fault it is my fault because I do not have the money to do it.'
'As a matter of fact, when I was living on myown I did not have the money to cook my own food.'
A low income group of older people living at home spoke ofconcerns about older people who did not take up benefits, how fear of billsmight cause them to cut back on essentials such as food and heating.
'But at the same time the people are paying out more inbills that they are getting in, but they are worried because they pay their wayand they are leaving themselves without food.'
Not having control over your money could be another aspectof feeling that all your freedoms had been taken away. One homeless man said,
'the way I look at life is this - tablets, medication'scontrolled, money's controlled, my life's controlled.'
For others, for example some who had experienced mentalhealth problems, it was the hassle and red tape associated with obtainingbenefits and paying bills that caused additional stress.
Other material resources that were important to people wereaids and equipment to help maintain independence, such as an electricwheelchair, or a hoist to lift someone who needed care. Not all such items (forexample a raised toilet seat) were expensive, but whether they could be madeavailable quickly made a difference. Not only personal resources were at issue.Awareness that budgets for services were inadequate or might no longer beavailable caused anxiety and stress to those reliant on public services.
Carers said more about income. Many expressed the view thatthey saved the state money by what they did and they felt unrewarded,especially if they had given up a job in order to care.
'I'm really angry about this because I don't want to berich but I actually feel disenfranchised that I'm doing a job, equivalent to afull time job, and I'm expected to live on less than income support doing itand no protection when I stop doing the job.'
Material resources were an often implicit basis for havingaccess to other social benefits and, increasingly, to services. Without them,other doors were closed and choice limited. Problems in accessing resourcescould create stress and a sense of justice denied. Lack of material resourcescould also add to people's sense of exclusion and lack of control.
Social and emotional needsFor disabled people the need to be and to feel respected andvalued was essential to integration. For people who had experienced mentalhealth problems it was important to rebuilding sense-confidence. Lack ofrespect was experienced through the behaviour of individuals and was often feltto be due to ignorance of someone's situation and needs. Undervaluing of peoplewas also perceived to be embedded in social opportunities, in organisationalpractices and in policy. For example, denial of access to appropriate trainingand employment opportunities, gave a strong message that people's contributionwas not valued. Whereas a job,
'I think it is part of self esteem, I think it is a veryimportant feeling
'It makes you feel that you are not just a disabled person
'I mean you do not even have to get a paid job, just to knowyou are doing something useful.'
Lack of understanding from others caused some people with adisability to withdraw and keep themselves apart. A visually impaired manexplained,
'I have always kept myself away from other people....Iwould never arrange to meet people at a corner because I would never know and Iwould never admit to them I had a problem, so I have always been a sort ofloner in life, simply because of that, to save myself embarrassment.'
The importance of respect applied across all the groups andincluded the right to respect for cultural practices, for example preparingappropriate food for people attending a lunch club. One reason that supportgroups were so highly valued was that it gave people the opportunity to speakopenly in an atmosphere of trust and understanding which they might notexperience in their everyday lives.
'And to be in an environment like this, where you canspeak freely and openly and not be worried about you know, what's going toleave here .' (HIV support group member)
For carers, for example of people with dementia, it might beone of the few places where they felt the reality, physical and emotional, oftheir caring work was appreciated.
The street and the workplace were places where experiencesof discrimination were often mentioned, but it could be anywhere, in shops orin the pub for example. Other people's reactions were often the product of fearand of ignorance. One husband recounted how he and his wife always arrivedearly in the village hall for the bridge club so they could be sure of a seatwithin access of the toilet, so it happened they were seated when other peoplearrived. New people behaved normally with his wife until she got up to go tothe toilet. When they realised she had trouble walking, their attitudeschanged. A mother who was in a wheelchair recounted with disbelief that peoplecould be surprised that her son could walk. Several groups mentioned that otherpeople thought they could say anything they liked to someone who was disabled,including even 'how did you have a child?' Other people often reacted tosuperficial appearances, such as the fact of someone being in a wheelchair. ‘When I was behind my desk people thought I was just like everyone else,but when they saw me wheeling...' All people wanted was to be treated likeother people.
'I think that if folk have the same respect for you thatthey have for 'normal' individuals it would help, they either stay clear of youor they smother you and it is very patronising.'
Being understood also involved receiving appropriateacknowledgement from the caring services, about how it felt to have gonethrough certain self-image through injury or illness. Lack of support with suchfeelings could lead to a sense of unresolved loss and some people used alcoholor drugs as a coping strategy.'The pain of the loss never goes away.'
'I have lost my independence since I have come here, myhouse has been given up, all my furniture has been removed, so it has beendivided down and everything. It is the first time in, I would not like tosay how many years, that I did not possess a front door key.'
For older people and their carers being understood andrespected also had to do with how sensitively personal care tasks wereperformed. There was a feeling that this could not be done by anyone and thatit mattered that the person was helped by known individuals and in a caringway.
How you are viewed and treated by others can have a profoundeffect of whether you feel included or excluded from society. Its implicationsare not confined to the emotions, important as these are. Disabled peopleargued that discrimination which is embedded in policy or practice deniesindividual rights, fails to recognise the positive contribution which peoplewith disability or illness can make and so further restricts theiropportunities to participate in a meaningful political, social and economiclife.
to have contact with family or friendsTrusting relationships and social contacts are important forwell-being, both for self expression and emotional support and as sources ofhelp and information. For people who were carers, who had been isolated bymental health problems or who were older and less able to get out, the need tobe in contact with others, as we have already shown, was particularlyimportant.
There were many reasons why community care users lostcontact with friends or family or found these hard to maintain. People who hadexperienced mental health problems explained how their illness sometimesdistanced them from their family, young men with head injuries described thebreak-up of their friendship networks after the injury. Often, as we have seen,there was an interaction between the person's own loss of self confidence andthe reactions of other people. Sometimes periods of illness or care causedpainful losses which needed to be acknowledged, as in the case of a woman withserious mental health problems whose children had been fostered for longperiods of time, 'So it's been a huge chunk out of their lives that Ihaven't been available.’ This woman's experience reinforces the pointthat others made, that illness and disability impact on the whole family, noton an individual alone.
The need to stay in contact with family and friends wasagain an aspect of choice, which could be denied by housing shortages,admission criteria to care settings and lack of appropriate care available tothe person in their own home. Being close to family or friends, of course,could also be critical to the ability to stay independent.
to be able to get out and aboutBeing able to get out and about was a common need acrossusers and carers. It contributed to well-being by enabling people to exercisetheir independence and to access support, as well as just being part of everyday living. The need then was shared, but the specific value of being able toget out of the house or to move around freely had a particular emphasis,depending on people's needs and situations. For carers, the issues were aroundthe right to respite and the need to be out and back in the time available. Acarer is also affected when appropriate transport is not available to take theperson they care for to an appointment or to day care. For older people in anursing or residential setting or even sheltered housing the issue is aboutchoice, the freedom to shop for oneself or go to the church you belong to,rather than to the nearest to the facility. It may also be an aspect of keepingactive. For people who have experienced mental health problems or chronicillness, being able to get to places where they can meet others, whether inordinary leisure situations, or in support groups, is very important tomaintaining well-being. People with learning disabilities living in thecommunity valued very highly the possibility of getting around to go shopping,have a cup of tea, or go out to the hairdresser's. For people withdisabilities, the barriers in public transport systems presented a majorreduction in access to ordinary social opportunities. Being able to get aroundwhen you need and want to is therefore essential for community care users andcarers to fulfill the goals of independence, active living and having socialcontacts, that they identified in the focus groups.
For example, in a remote rural setting on an island, amonthly lunch club helped to meet the need that older residents and othersidentified to get together to meet and talk. The club drew from three islandsand for some, therefore, getting there meant a trip of several hours. Distancecould limit choice for older people, for example they would use the one localshop, rather that travel to the main centre. People were more reliant on taxis,because of the lack of public transport and these were expensive, againrestricting choice. Interestingly, in a primary care discussion group, we weretold that getting to the doctor's was not a problem because people could alwaysexpect a neighbour to give a lift.
Remoteness was also experienced by some older people, andnot only those living in institutional settings. One older person living athome found the infrequency of buses at night in her area a restriction. Havingwitnessed a mugging this person did not feel safe out a night. Some olderpeople living in sheltered housing whom we interviewed were housebound andtheir home help took care of shopping and other tasks. For others it was stillvery important to be able to get out on trips or to do things for themselves.Choice was important here. One woman would have liked to get into town as wellas having things brought from her local shop.
'We get the shopping done, but there are some things thatyou like to shop for yourself. They're good for potatoes and vegetables andbread and things like that, but there are some personal things that you like toget. And I just like to be able to get out in the town. They called me MrsNever-In when I was able to get out.'
A relatively new resident in a nursing home found that itssituation was making it hard for her to maintain her social networks. Theproblem was not so much one of distance, as of transport routes and cost. 'Iwould like to be able to get more easily to my church. I don't want to startanother church, I want to go the one that I went to before.'
Transport is one of the biggest priorities for users andcarers in this respect. Transport problems were mentioned in nearly all theuser groups, though fewer carer groups, perhaps because carers who were at thegroups were not those who were house bound. It is important to stress, however,that transport was not the only issue. Public attitudes, resources and to acertain extent, information were also important barriers that stopped peoplegetting out of the house easily and so reduced their social participation.
voice, autonomy and rightsThe right to be heard was raised explicitly in severalgroups. It is only summarised here because the issue of voice and rights israised throughout the text. There was frustration that the people with theexpertise, such as users and carers, were not consulted about matters of designor service practice and so facilities were built or services developed thatwere inefficient in meeting needs. Examples given included the design of artsfacilities, the location of barrier free housing and support groups that peoplecould not attend, for example lone carers who could not get out. Quite oftenthe difference between making a place accessible or not was a question ofknowledge and imagination, rather than of cost. For example, one hospital hadadapted toilets for disabled people but, while there was now space to enterwith a wheelchair, the door knobs could not be turned.
While one effect of listening to the voices of users wouldbe more usable and efficient services, the issue of user voice was much broaderthan this. For some empowerment meant more direct control over their resources,their care and their lives. Some were aware of a need for organised groups toinfluence policy and resource distribution. Others argued just for a levelplaying field.
'We just want the same responsibilities, the samefrustrations, the same choices as everyone else. That's true integration.'
Many of those we interviewed were not militant, but theimportance of the need to secure their right to autonomy was clear from theirexperiences. This would entail not only their right to be as independent asthey were able but also to have freedom of choice, freedom to criticise and tobe free of abuse. The young people in the special school told us that theypreferred the care assistants to the teachers because they did not nag,listened to them and took action when they were hit by other children. Anotherintegral aspect of autonomy, which was only spoken about in two groups, was theright to be a sexual being. For many people in the groups or the people theycared for, the availability of appropriate support and the way it was given,were essential to make rights a reality. This included both advocacy and directservice provision. The discrimination, or just the lack of care that peopleexperienced, could be traced back not only to individual prejudice but also tolack of power, low prioritisation of their needs and discriminatory policies.It could be an issue of justice, for example a young man with a head injuryfollowing an assault, felt he had been denied this by the courts. The burden ofproof lay too heavily on the people in need and not sufficiently on theframework and institutions that should protect and support them.
'If we feel we are being discriminated against, we needto have it as a policy, as a fundamental human right not to be discriminatedagainst, not to have to go and amass the evidence as individuals.'
This is why some saw anti-discriminatory policies and activeequity strategies as at the heart of the matter.
In this section we have tried to illustrate how thefundamental dimensions of human needs had meaning and importance for thewell-being of community care users and carers. In the next, we give examples ofthe areas highlighted by people in the discussion groups as those which impededtheir achievement of these goals but also where practical changes could lead topositive improvements in their quality of life.
Barriers and enablersThe action areas illustrated below were those that emergedas important in the discussion groups. There are given roughly in the order inwhich attention was paid to them in the groups, with the most discussed firstbut, since discussants were never asked to decide on priorities, this should betaken as meaning no more than that the first few topics raised certainlyfigured as major issues. We have taken a topic based approach, in order toprovide a concrete action agenda and to help to define responsibilities forchange. This is not intended to detract from the fact that underpinningapproaches, such as broadening access and ensuring consistent standards, applyacross all the areas. Many of the changes suggested concern the way in whichthings are done and not all have significant cost implications. It is strikingthat many issues relate to the factors impinging on the whole of ordinary lifeand responsibility for improving them is not necessarily with social care oreven formal services. The perspective that formal services have become toodominant and that people in communities need to assume more personalresponsibility for including the marginalised and excluded has been made bySchwartz (1997).
transportAccess to appropriate transport is essential for socialparticipation, an important aspect of well-being. For many community care usersand carers it is also essential to managing daily life, to get to appointments,to groups or to have respite.
For example, one mental health users' group had identified aneed for people to have somewhere to go on a Sunday and had arranged to openthe centre then without staff. But this was a remote rural area and so userswithout their own transport were unable to attend. A parent of a disabledchild, living in a remote area, had to take her child away long distances forassessment. Transport from the airport to the hospital was a problem as the buswas not really suitable for a disabled child. People who needed to get to anappointment or who were hoping for a respite break were very dependent on thereliability of transport and their experience from different providers couldvary. This affected their quality of life and sense of control.
‘I cannot do very much because my man is a strokevictim. He goes to the day centre three times a week so I have got to wait forthe bus coming on a Monday morning. Sometimes they come at 10, 10.30 or 11. Youjust have got to wait. Tuesday they come between 9 and 9.15. Wednesday morningI have a Crossroads carer who comes in and sits and talks to him and I go tothe club. I am picked up, he's very good that way, he picks me up.'
Many physically disabled people considered it a necessity tohave their own transport, this was especially so in a rural area. It gave themindependence. Usually this was a car, although one person found an electricscooter enabled him to have greater freedom. 'And the car's her legs, simpleas that. Without the car she would spend 99% of her time in here.'
This contrasted with experiences of public transport whichhad many common patterns, whatever a person's particular needs were. Commonissues were: costs, lack of provision, access and lack of awareness. Costs ofadapting and ensuring cars were mentioned and a mother with a disabled childfelt she needed a larger car. But for many groups the cost of taxis was also anissue, this often being the only available alternative to public transport.Choice was restricted because only the hackney cabs, and not the private hirecars, had access. The young men with head injuries told us that only a verylimited number of hackney cabs in their area were accessible and two of thefour available chose to work the airport route and were not working in theevening when the young men wanted to go out.
'Being able to afford to go places, whether you can walkor not; having the money to go certain places and no matter what it is. But ifyou can find enjoyment or entertainment or whatever, and the money to go thoseplaces. If you can't walk you need more money, you need taxis and that'sit.'
The importance of transport to the well-being of the peoplewe interviewed contrasts with the low priority they often received fromtransport services. Changes to familiar bus routes had a big impact on Chineseelders, who relied on knowing certain bus numbers or routes, people withlearning disabilities and people with visual impairments who depended onknowing that a particular bus was due at a particular time. For people withlearning disabilities living in the community, a bus pass was a vital ticket tofreedom, but costs meant that one person could use it locally and was morerestricted in visiting her family who lived some distance away. Relativelysmall changes would make a big difference. For example the needs of people withvisual impairments on train stations would be better addressed if announcementswere such that it was clear if the train coming in to a platform was the onemost recently announced. Training in disability awareness for bus drivers wasrecommended by the group of people with visual impairments. The attitudes theyencountered, together with the frequent changes in service and lack ofaccessible information had resigned some to not using the bus. Whether it wasthe bus or the train, lack of information restricted people to using onlyroutes they knew.
'I went to the first bus stop, nobody there, so I walked acouple of bus stops to find one that might be busy, but they were all quiet,6.15 pm they were all quiet, so the first bus that came I stopped it and said"are you going to -(place)?" and he said "Can you not see up thefront where I am going?" '
Access to appropriate transport was a major issue for usersand carers and one that some were arguing should be recognised as a right. Costwas seen as a big problem. Concessionary fare structures for public transportwere one option, but did not necessarily solve the problem, for example inremote rural areas, where transport was infrequent. Some disabled people arguedfor greater recognition to be given to the additional costs of transport fordisabled people, for example the costs of adapting a car. Some of the criticismof public and private transport systems concerned the lack of suitably designedprovision. The groups suggested that if there were more taxis offering disabledaccess and disabled people could afford the cost of taxi fares, there would bea big demand. A problem experienced with public transport was the lack of asufficiently frequent service, inadequate coverage and the effects of changingroutes and timetables, for example with deregulation. A comprehensive andaccessible public transport system would bring major benefits to the well-beingof community care users and carers who face, perhaps to a greater degree,problems experienced by others, such as being restricted in going out in theevening, inability to visit friends and family, inconvenience in attendingappointments and fears for safety at night. This illustrates how efforts toimprove community care services, such as setting up carer’s groups, may belimited in their effectiveness, unless specific transport issues are addressed,and suggests that transport should be given a higher priority in planningcommunity care day and support services.
Many of the changes which the people in the groups wanted tosee in relation to transport did not necessarily have major cost implications.Training in awareness of the needs of disabled people for bus, train and taxidrivers for example, would make a significant difference to some of the worstproblems recounted. Procedures and organisational practices, such as makingtrain ramps inaccessible after six in the evening, also need to be highlightedand changed. Lastly, the implication of users' experiences of the variabilityin approaches and provision, suggest that there is a strong case for transportstandards for people with disability in terms of access, information and staffbehaviour.
enabling and appropriate servicesMany of the people in the groups and the people that theycared for needed services to maintain their independence and quality of life,and even to manage on a day-to-day basis. Earlier we saw how important it wasfor people to be able to stay as independent as possible and to have choice.Yet support systems could be so organised that they presented barriers to this.People said that they often experienced problems in accessing the kind of helpthey needed or found that the help on offer was not such as to promoteindependence. Inappropriate services were those that insufficiently tookindividual needs into account. One person who had entered a nursing home foundthat trips to a garden centre palled somewhat, given that she had had to giveup her own garden. Another welcomed the dial-a-bus scheme but found that on agiven day it did not go where she wanted.
Approaches to community care assessment could reinforcenegative images, stressing what help people needed, rather than what they coulddo.
'For instance, the community care assessment form, I didthis recently, is clearly designed for an elderly person living in their ownhome and not a young person seeking to live an active professional life.'
Carers of people with dementia spoke of the need for reviewsto keep up with a person's changing needs. Variability in a person's conditionwas also mentioned by a younger disabled person as a reason for assessing needin a way that allowed for imaginative service responses, so that a person couldstay independent and have a consistent quality of life. Multiple disabilitiesmight represent a particular area of unidentified and unmet need.
Another barrier to accessing appropriate services was theexperience that some people had of having to push to get what they needed,rather than being offered information about what was available or having theirpath to accessing services eased. 'I get that feeling now as well that Ireally have to push it myself and I have actually been pushing it.' Gaps inavailable services could limit their appropriateness and the most oftenmentioned situation was fewer or no services available at the weekends, duringevenings or overnight. Resource issues (see above also) were identified ascritical to the ability to deliver enabling services. 'The philosophy is anenabling philosophy. Unfortunately the resources for enabling are not being putin place.’ Services that enabled were services that would supportpeople to make positive use of their own capacities, rather than merely takeover care.
'They're offering replacing services, not enabling services.They'll offer a home help to go and do your shopping for you, but they won'thelp your home help to enable you to go and do you own shopping'.
One example was a mother with a disability who wanted to beable to take her child to school, rather than to have someone else take her.This reinforced the sense that her positive role as a parent and a carer wasnot being acknowledged. Some families with a disabled child or carers of peoplewith dementia mentioned that as alternatives to traditional services, theywould prefer home-based respite or the opportunity for the person cared for tobe taken out.
The possibilities of replacing traditional day care ortraining centres by resource centres excited discussants and illustrated thedifference in philosophy and practice between 'maintenance' care and enablingservices. The criticism of traditional day care, as it was perceived to be, wasthat it did nothing positive to enhance quality of life.
'A day centre is a convenient dumping ground for disabledpeople because it gave carers a break, it was an easy inexpensive option forthe local authority, but it did nothing, absolutely nothing, for the disabledthemselves. You know, they created nothing positive at the end of the day.'
One disability resource centre, where a discussion grouptook place, had a quite different philosophy. It aimed to avoid dependency andto be a stepping stone back to independence. One way in which it did this wasthrough an outreach programme. Instead of everything happening in the centre,people could take activities home. Another disabled group, living in thecountryside, also mentioned a project that brought computers and otherequipment into people's own homes for them to try out and use. Some people withvisual impairments had experienced the use of a centre that provided enablingequipment. They stressed the difference it made to be able to read your ownletters or even bills! 'That is a major thing for a visually impairedperson, that you do not have to go and get a sighted person to do it foryou.' A resource centre, such as this, provided local information and theopportunity to develop meaningful skills.
'In my old job I used a keyboard and I never thought I wouldbe able to do it again, but I had never tried it and this unit gave me a chanceto do that, and now at night when they are all sitting watching the televisionI go upstairs and key things in.'
Carers' centres were another development that were describedas being geared up to providing appropriate and enabling services. For example,one provided an information database, a room where carers could go and sleepand, support for male carers.
Enabling was also about integration and not only specialistand more flexible services. A group of disabled people in a village who had gota ramp and handrails installed at the village hall found that it benefitedother groups, young mothers with prams and older people, and that theactivities they organised were also shared by others. On the other hand we weresurprised to learn that the sports opportunities enjoyed by the young people inthe special school took place in a nearby Young Offenders' Institute.
Progress towards enabling services, one of the goals ofcommunity care, was felt to have some way to go. The issues entailedavailability and use of resources, philosophy and new ways of configuringservices more appropriately for needs. There were some good models of howservices such as day care could become more enabling and foster independenceand useful life skills. More intractable was the problem of home care, even inits most recent manifestation, often failing to promote positive well-being. Itwas felt that this was partly due to the way that needs are assessed. It mustalso be an issue about the best use of multidisciplinary skills.
informationInformation was a route to control and to independence. Ithelped people to negotiate the help they needed and to deal better with whathad happened to them and the problems that they faced. Information could alsohelp others understand what was happening to their relative, colleague orneighbour.
There were many accounts of information not being providedin the correct form or at the right time. Two women with disabled children feltthat, because it takes time to come to terms with a diagnosis, help should becumulative and start at the earliest opportunity. They were amongst those whosuggested that a resource pack should be given, in this case by the healthvisitor, as a basis for further follow up. A person with a physical disabilityalso explained how information needed to be presented in manageable chunks,always with a lead into the next stage. 'So you can actually digest itappropriately for your level of ability and your situation, and the next stepif that's necessary.'
People needed information about their condition or illness,but also about local services. It was a frequent complaint that this was noteasily available. Carers' groups and resource centres often fulfilled thisfunction. Not all expected channels of communication could be consistentlyrelied upon, for example GPs. A woman from a dementia support group commented,
'They are still coming along to the group and they arestill saying that they are not getting this information from their doctors,they are not getting the information that they need.'
Even organised groups found that it could take a long timefor them to discover how to access services and resources.
Leaflets were not a sufficient answer for gettinginformation to people. In certain circumstances people wanted an advocate whowould push for information and take their case forward. Not everyone with adisability or who was house bound could get to places where leaflets were. Thecarer of a person with dementia mentioned how much she would have appreciated ahome visit, early on, to go over things with her. Carers who attended a centrefor people with dementia appreciated the direct contact they got there withprofessional such as OT’s and physiotherapists. They could discussindividually particular issues about the person they cared for.
People who had experienced mental health problems and peoplewho had head injuries felt very strongly that information about medication, howto take it and the side effects, should be given much greater priority. One mandescribed leaving hospital and sitting down in bewilderment with his wife,trying to work out the plastic bag full of pills and coloured cards. Hesubsequently helped to write a booklet to be given to people on discharge. Oneperson suggested that everyone should have an information pack when they weredischarged. 'If you leave after having a child you get a little goodie bag.Something like that with the information on services you could get.'
Sometimes knowledge about the side effects of drugs was veryimportant to be able to manage them.
'And if you don't know that is a side effect of the drugyou're lost. You're just this sort of stiff, painful, rigid person and you'rein even more confusion.'
Without information about side effects people might notunderstand the reasons for changes in mood. It was also important for otherpeople to understand how prescribed drugs might be contributing to the way youlooked and behaved.
For disabled people, lack of information and misinformationoccurred in all aspects of life. Travel agencies and hotels were particularlyidentified as problematic, often lacking sufficiently specific informationabout facilities. This made it stressful to plan a trip or a holiday. 'Theysay "disabled people" but they don't say how disabled.'
There were some specific suggestions as to how informationcould be presented to make it more accessible. Written materials in large printsize (14 or 17 point) and dark print and also available on tape then mightbecome accessible to some sight impaired and older people. A group of disabledpeople suggested that teletext was a good way to disseminate up to date andrelevant information.
The underlying point about information was that people feltthat its importance was under-estimated, it was higher in their priorities thanin those of providers. People themselves had to root out the information theyneeded and they felt services should be much more proactive in linking them tothe information they needed. Information was not just about leaflets, but aboutadvocacy, continuity of support and being able to access relevant, localinformation at the right time. It would promote independence.
resourcesLack of resources was a barrier for disabled people becauseof the additional costs of having a disability. For example, someone pointedout that an electrical bed, which helped to raise you up, cost three to fourtimes the cost of an ordinary bed. There were also equity issues. Some disabledpeople who were not on income support believed that they would be better off ifthey were because of what they had to pay for. The difference in resources (andtherefore services) between areas was a common theme. This could even restrictthe choices of those who lived in a better resourced area. Some people livingin an area of recognised urban deprivation said that they did not dare to move,although they wanted to, because they would lose access to essential services.
In terms of benefits, much of the discussion was about theneed for advocacy. To help with under-claiming and to cope with thedifficulties of form-filling, several groups suggested that there should be oneworker who helped them make their case and take it forward, and this applied tohousing too. To counteract individual discrimination and judgments based onappearances, one group (HIV positive) suggested that there should be benefitchecklists. 'It shouldn't come down to whether an individual officer thinksyou look alright.'
The impact of health needs on funding and access toresources was a strong theme. Some felt that their health needs wereinsufficiently understood and this imposed barriers on their accessingresources. Others pointed out that the costs of the health care process to thefamily were not always allowed for, for example if one child had to be takenaway for assessment by a parent. Health needs might entail a specific form ofsupport, for example, if respite was being given, but if budgets were notavailable for this need, then the service was not what was needed. An examplegiven was night supervision of a child with epilepsy.
'And they are not taking any of these [needs] on board, theyare just going for the cheapest option.'
A woman had found that emergency respite for her childrencould be paid for, whereas it had not proved possible to fund more ongoingsupport that might have prevented the crisis in the first place.
For one group of carers of people with dementia the fundingsituation in relation to health needs was seen to work the other way. Peoplehad the impression that if the person they cared for had other medical needsthey were more likely to get services, and to get them quicker, than if theneeds were defined as essentially social. Similarly, people in several groupsspoke with cynicism and anger about the changes in home care. They perceived anorientation towards the social, personal care and paramedical tasks as a cheapoption, leaving them with a service deficit in terms of heavy housework.
'I think very shortly we're going to have, as I alwayssay, the cleanest bums, the shiniest of faces, the dirtiest of houses and besocially dead.'
People in rural areas considered that services were moreexpensive to provide there and that opportunities, for example for a child withspecial needs to receive classroom support, would have to be defended, giventhe small number of people in need of support in a given area. Some alsoenlarged the point about budgets and service provision yet wider. They feltthat services were basic, aimed at ensuring survival or safety, but notpromoting positive health or quality of life. One physically disabled personstressed that he did not call basic personal care 'living'. He felt that thestate's view of independence was, 'the ability to wash, feed, get in and outof bed, dress and go downstairs.' Within this framework, the level andtraining of staff was important. People in one of the homes spoke about the 'ina minute' nurses because that was the response they frequently received fromauxiliaries to individual requests.
At an individual level, lack of resources could mean theinability to live your life as you wanted or to access essential support.Funding problems and divisions between budgets at the level of services alsoimpacted on individuals in the form of lack of services or services that werenot appropriate to needs. This in turn could create stress and did not promotequality of life. Users and carers recommended more coherent approaches toallocating budgets on the basis of needs, a more imaginative approach andclearer and more consistent criteria for resource allocation.
public attitudesUsers had described public attitudes as a major disablingfactor. They considered that lack of understanding restricted their access toordinary life opportunities in many ways. Three groups, people with physicaldisabilities, people with visual impairments and people with mental healthproblems, identified the education of children in schools as the starting-pointfor changing attitudes in society at large. For example children in primaryschools should be educated to accept difference and 'in the fact that peoplewith disability are human beings, with the same expectations as other humanbeings of the basic things in life.' Anti-discrimination was felt to be amatter for everyone to take on board, public and professional.
'And many of us stay more whole inside than many quote"able bodied" people and is that not healing? That is the nature ofwhat is whole. It's false expectations. Perfection.'
Another strategy for changing public attitudes was publiceducation campaigns. This was mentioned in relation to mental health as well asintegration and there was a suggestion that HEBS could mount such a campaign.
'When are the HEBS people going to produce some sensibleadverts about mental health?
'I mean what's his name walking about is great but-
'A big gap isn't it?
'There's 40% of people do need help at some point in theirlives, which means that it's perfectly possible that the rest of the 60% knowsomeone who needs help. So the knowledge is needed for 100% of the population.
'So you're talking about an awareness type campaign?
'Yes it could be all about demystifying illness anddemystifying psychiatry in general, talking about what help is needed.'
Working within communities to change attitudes was not muchmentioned as a strategy, but there was awareness that integration made adifference and that once people in an area became more aware of disabled peopletheir attitude might change. It must be said that the people we interviewedwere not without prejudice. One person spoke against services for 'blacks', onegroup evidenced their position on the local list of priority care groups nearpeople with drug and alcohol problems as indicating of how little they weretaken seriously.
Lack of understanding from others was a major problem forthe people interviewed. Education in primary schools and public informationcampaigns were explicitly identified as strategies to improve public awareness.Implicit in many comments also was the need for genuine integration andanti-discriminatory policies.
employment and trainingEmployment represents a major point of access to benefits insociety and is an opportunity to take up a valued social role and todemonstrate a positive contribution to society. This may apply to unpaid aswell as to paid employment. In earlier sections we illustrated how some of ourdiscussants faced barriers to entering or re-entering the workplace and howthey felt the need for supportive environments in which to return to trainingor to work.
Problems encountered in being enabled to develop skills orreturn to work included: fear of risk and insurance problems; lack ofappreciation of the capabilities and skills of the person; concerns aboutunpredictability and lack of provision of suitable working environments (workorganisation as well as physical environments). An example of someonewho was having difficulty getting back to work was a woman who had experiencedserious mental health problems and now, with her family nearly grown up, waslooking to return to a positive role outside the home. Employers were felt tobe the key group to target to change practices.
Traditional rehabilitation programmes received a scornfulpress from some people in the groups.
'Retraining and vocational rehabilitation for people withdisabilities - it's the biggest desert we've come across. Every single one ofus has life skills. If you go out there and ask anyone, who has been in a daycentre, with a disability, 'what do you want in life?' - a job, to work with mymates.'
The approaches that were appreciated were those thatdeveloped skills and provided bridges back to employment (see also enablingservices above). One group had found the existence of a Mental Health Educationand Training Officer had helped to provide such a bridge. In the groups thatwere concerned about employment there was a sense that this was a very majorissue that went to the heart of integrative policies. Without an employmentstrategy, the argument went, community care could not claim to be enablingintegration.
'If you're talking in terms of community care - communitycare should be involved in rehabilitating people back to work, not just puttingthem into isolated little houses.'
Caring was undervalued as a job, it was generally agreed.One issue that was raised by a number of groups was the need for carers to haveaccess to training. Training in lifting and handling was a priority, to avoidinjury and for safety reasons, and also, where appropriate, knowledge aboutdementia.
Training and employment are major aspects of access. Someusers and carers had experienced considerable barriers in obtaining access tothe workplace and this impacted on their income, their sense of self and theirrole in society. Ways forward were felt to lie in developing employment schemesand schemes that bridged training and employment and in a major policycommitment to see this a priority for achieving the goals of community care.
consultationConsultation was one, if by no means the only, way of theuser and carer voice being heard. It was important to give people moreinfluence in shaping services. Those who had been involved in formalconsultation exercises were sometimes cynical about their usefulness. Theycould be under-resourced and not lead to action. Exclusions from the processwere also a concern, since needs differed between and among groups.
'Other people with specific disabilities don't affiliateto that consultative body because they've got their own interests and they areso sick of being consulted and they ignore you. And what everyone wants to see,is not consultation, it is action, within timescales that are realistic for thepeople concerned. Not a response after ten years down the road.'
One person described her astonishment when, after four yearsof joint planning meetings, the health board suddenly came up with their ownproposals.
Consultation was not always seen as the best mechanism forinfluencing policy and at 20% of the population, some disabled people pointedout that they would expect that to happen. 'What we don't see changing ispolicy, locally and nationally. And how do we, people with disabilities, affectthat policy?' People also wanted to be involved in very specific issueswhere they felt that their voice could make a difference, ensuring thatdevelopments and services could be available to the whole community.
'I don't think they have to be complicated, I think justif the council's going to make changes, say, pavements, shops or whatever, theywould just consult with groups and discuss it with everybody and notjust disabled or elderly because everyone has got different problems.'
Experiences of existing consultation mechanisms were,therefore, that they were bureaucratic, disempowering and often ineffective interms of action. There was a real need to recognise the range of needs and toappreciate that not all had been heard. Some users wanted a more effectivecollective influence on policy. There was also a wish for the opportunity for amuch wider range of people to be involved in planning and feedback on issues ofdesign and standards.
housingThe lack of availability of appropriate housing stock was anissue raised in several groups. This could seriously limit people's choice asto where they lived and might mean that they experienced a waiting list forsuitable accommodation. Some people felt that the priority they were given forhousing reflected a wider view of how they stood within society.
Assessment for housing could be made more effective toreflect awareness of people's needs and illness. For example, someone who wasHIV positive explained that the illness' progression needed to be understood sothat people were in warm, dry, quiet ground floor housing before they becamereally sick. People with visual impairments wished they were consulted moreabout housing needs. Stairs were not necessarily the insuperable problem theywere assumed to be, if you had a handrail, but for one woman it was the abilityto live near her family, so that she could still manage while her husbandworked shifts, that really affected her independence.
'Housing's really complicated.'
'I think it's a raffle.'
'When I first became disabled I lived on a scheme outsidethe town that I really liked living in but the only place they built houses wasthe centre of town, so I had to move away from everybody - neighbours, friends,everybody - and into this house in the centre of town.'
The housing issue was overwhelmingly about the availabilityof suitable housing but also about greater awareness and knowledge on the partof those assessing housing needs, of chronic illness and of the other socialfactors that affected independence. Some users felt that their needs were notappropriately prioritised within housing waiting lists, raising questions aboutthe lack of fit between community care objectives and other pressures onhousing stock.
Summary and conclusionsIf there is one message from the user and carer focus groupsit is that more could be done to improve the quality of life of community careusers and carers. There was strong agreement across the groups in the areas inwhich action was needed and these topics, transport, enabling and appropriateservices, information, resources, public attitudes, employment and training,consultation and housing, have been explored in the last section of thechapter. We have illustrated the links between these areas and the needs ofdifferent community care users and carer groups. Moreover, we have shown howusers and carers perceive that satisfying these needs would improve theirquality of life. The people we spoke to wanted to stay as independent aspossible for as long as possible and to make a positive contribution to others.They highlighted specific links between the barriers that they faced and thelimitations on their independence and quality of life. For example, olderpeople found themselves less able to go out and stay active than they wouldlike, disabled people encountered barriers in the environment, in publicattitudes and in structural discrimination to their living an ordinary life andcarers found their own quality of life and that of the person they cared forrestricted by lack of respite, resources, information, training and enablingservices. For some groups, such as young men with head injuries, a potentialcycle of isolation was revealed, beginning with the shock of major injury,leading to loss of friendship networks and increased dependency which could bereinforced by public attitudes and structural barriers to reintegration.
The opportunities to improve quality of life for communitycare users and carers are therefore considerable. Users and carers themselvesconvincingly identified and explained the sorts of areas and levels of actionthat are required. Some are concerned with community care practices per se,others require action by other partners in statutory and independent agenciesand in society at large. The argument was made again and again in the groupsthat even small changes could bring large gains in terms of well-being. Theusers and carers also suggested standards, for access to buildings and forpractices, so that progress in reducing discrimination and improving theconsistency of services could be monitored. Examples of good practice wereidentified, in terms of resource centres and carer support, for example.
Nonetheless, the experiences of community care users andcarers seemed to suggest that an overarching understanding of the links betweenimproving the conditions for quality of life and the community care aims ofindependence and integration, was largely missing at the level of policy andagency goals. Quality of life was not a core value in the way that serviceswere planned and priorities decided. Budgets and organisational boundaries puta dividing line across the satisfaction of holistic needs. Users and carersthemselves identified the fact that they did not have a sufficiently strongvoice as one of the reasons that care was still not sufficiently enabling andthat society at large could ignore the needs of some of large groups of itsmembers.
In the next chapter we examine the perspective of purchasersand providers of services and of those with a role in policy in order toexplore further the obstacles to, and the opportunities for, improving thequality of life of community care users and carers. We ask about people'sunderstanding of quality of life, about the priority given to it, about howthey see the role of others and about where responsibility lies.
User and carer perspectives
How it feelsAcross the five study areas we spoke with 17 groups ofpeople whose needs are among those that community care policies and servicesaim to provide for. A further eight focus discussion groups were held withpeople who care for someone in need of support. In this chapter we first givean idea of the experiences and perceptions of the wide range of groups whospoke with us, in an attempt to convey something of how their situation feelsto them. In the second part we draw across the groups in order to bring outcommonalties in the needs and issues that people identified. Where particularcircumstances indicated a difference in needs, this will of course behighlighted. In the third and final section, we bring together what can belearned from the groups about the barriers which people faced to having theirneeds met and identify the services and approaches which people perceived aslikely to enable them to live better lives in the community.