healthscotland.com

Health promotion and community care: the perceptions of users, purchasers and providers of community care services

Contents:	Acknowledgments Summary Introduction Glossary (I) Glossary (II) Glossary (III) Chapter One Chapter two Chapter three Chapter four Chapter Five References (I) References (II) Appendix I: Note of methods Appendix II: Focus group topic guides Appendix III: Telephone interview schedules Appendix IV: Programme of discussion days Appendix V: Research participants

Chapter four

Professional perspectives

The experience of front lineworkers in social work and community and primary care was explored through ninefocus groups across the five study areas. There was a community health focusgroup in each of the study areas and a social work group in four out of thefive. We shall review the circumstances and experiences of each set ofprofessionals in turn, emphasising the contexts in which they worked and thebarriers and opportunities for developing work to improve the well-being ofcommunity care users and carers.

perspectives of professionals in community health (I)

community health services

communitymental health team

9 teammembers

communitynursing team

6 nurses andco-ordinator

primarycare

3 GPs, 6members of patient participation group in practice

specialistdementia team

6 teammembers

specialistdischarge team, learning disability

4 teammembers

The groups selected reflectedboth specialist and generic models of community teams. Most participants werenurses but multidisciplinary teams included other professionals such as an OTand a community pharmacist. The primary care group comprised generalpractitioners and patients; a later section will further explore generalpractitioner perspectives. The types of areas in which the teams worked covereda wide range including an island setting and a multiply deprived urbanarea.

The teams demonstrated the extent to which they employed abroad concept of quality of life, whether or not they saw this as healthpromotion. This was most clearly focused in the specialist teams.

'You are trying to give them the best quality of lifethat they can have.....it's trying to get them to feel that they are gettingthe most out of their life, helping them to achieve that, whatever it is theywant to achieve. Not imposing obviously our wishes or what our feelings are.'

This respondent gave the example of someone who might likehelp to get out to a club, although that might not be another person's wish. Inanother team a member summarised his role as concerned with 'empowerment'

'Essentially a lot of the work is about the mental andsocial well-being of the individual. And we will get involved in all sorts ofways. And frequently it's about people's isolation, it's about people's eatinghabits, it's about people's friendships and lack of them. And it's about thestigmatising of learning disabilities on the individual and their family.'

On the other hand a common experience of the communityhealth nursing groups was the feeling of being under extreme pressure ofworkload with limited time for proactive work. This was not only a question ofnumbers but of the growing dependency of people in community settings which ledto a focus on illness, rather than on health. Pressures experienced by frontline staff were attributed to funding decisions at a higher level.

'The amount of people we are seeing now you don't havemuch time for health promotion' (member of team with a tradition of healthpromotion work)

'I don't think there's any health, very much room forreal health promotion, not as much as we would like there to be. We tend justto have to deal with the problems..’

'Instead of being proactive, we're reactive.'

'As a health care team our focus is going to be muchnarrower in the future. .. epilepsy, severe challenging behaviour and mentalillness.'

perspectives of professionals in community health (II)

Tensions were reported with other agencies, althoughexperiences were different between groups. Some felt that they were taking onroles previously fulfilled by social work, for example maximising benefits.Blurring of roles was reported as problematic in several areas. Who should payfor what created major tensions for staff in the field. Here is a descriptionof joint assessments:

'It's come down to my patch your patch with resources
'Its fighting for respite care, for health services. You'restanding up there thinking "set of bolshie individuals"'.

One team reported a mixed relationship with social workbecause of what was perceived as one-way communication, 'from us to them andnothing back'. Social work itself was seen as a series of separatedepartments. Face-to-face contact with a named care manager was reported toimprove the situation. Despite the rhetoric of collaboration one person thoughtthat the pressures on the system had increased. 'I can remember when itwasn't like this. You knew who to go to and you could just pick up the phoneand say "Hi it's A, bla bla bla."'

From a mental health perspective, meetings around the careprogramme approach had improved relationships with housing. Primary careattachment also improved relationships. Another team found housing 'moreaccessible' than social work. In the island primary care setting there wasscepticism about the value of too much formal care and jokes about people whohad had to be 'rescued from care packages' and who had ended up runninghotels in their home for paid carers.

The concept of health promotion, its prioritisation andwhose responsibility it was, varied. One mental health perspective was that itwas about information and practical support because 'information ispower' and people had been denied it within the mental health system.'Really it's about giving someone responsibility by giving them that power,that knowledge.' Generic community nurses did not see it as a specialistrole but as part of what they did as nurses. 'Well definitely part of my joband part of everybody's job since we are all trained as nurses.' Healthpromotion was high on the agenda of the mental health team because of a longtradition of that work in that (geographic) area with established workinglinks. There was a multidisciplinary health promotion group involving stafffrom the day hospital, community mental health team, health visiting, avoluntary agency and social work. 'Health promotion has been high on theagenda right from the start.' The island setting presented particularissues. Clinics for health promotion in primary care were not felt to be usefulbecause of small numbers and because people saw them as stigmatising.

There were many examples given of opportunities for jointworking and of positive roles for community health services in improvingwell-being within community care. Lack of a voice was identified as animportant issue for people with learning disabilities and advocacy as arelevant function for the team. 'Choices are made for them. They are largelydisenfranchised.’ Another priority for this group, as perceived by theprofessionals, was their isolation and marginalisation within the community.'They have people that are paid to care for them but they don't havefriends.'

Work with carers was an increasing responsibility that wasmentioned across the teams, with a recognition of the information needs ofcarers. One example of positive health promotion was a rolling programme ofmental awareness talks undertaken by the community mental health team which wasconcerned to dissipate myths and stigma.

'I did one to a team of home helps who were afraid to gointo certain houses because of 'funny wee habits'.
'Thought they were axe murderers!'

The dementia team saw much more scope for positive healthpromotion with older people. The pharmacist felt that education aboutmedicines, with carers and with older people for example, was an unmet need.CPNs did not have the time and neither did community pharmacists. The teamswere therefore a resource for the community but they were not always perceivedas such, they believed. This was particularly true for the hospital-affiliateddischarge team for learning disabilities. 'We're a separate bit, we'rereally very separate but we are a part, we are a community resource.'

The groups with community health professionals illustratedsome of the pressures affecting joint working. There was understanding of abroad agenda, certainly among the specialist teams, in relation to improvingquality of life, but little opportunity to develop it. The specialist teamsthat were developed with a focus on a community care group showed the potentialfor developing more common values and practices through multidisciplinaryteams, but they still experienced territorial disputes with other agencies,that were often budget-driven.

perspectives of professionals in social work (I)

social work professionals

communitycare assessment team

9 teammembers

socialwork team

6 teammembers

caremanagers

9 teammembers

communitycare team

10 members ofteam

The social work teams selected also reflected a variety ofroles including care management and provision. The groups included people withspecialist responsibilities such as mental health. Two of the teams were basedin or attached to primary care. As with the community health teams they tookplace in a variety of settings from urban to island.

Amongst the groups of social work professionals, quality oflife was associated with choice and helping people to live independent lives.

'Giving people the opportunity of access to services andother types of opportunities that otherwise they wouldn't be aware of.'

Like their community health colleagues, social workers wereexperiencing a squeeze on services, one said that services were now in theirworst state since 1993. 'The most in need are at serious risk.' Another,working in a remote rural area thought that there, a market economy to improvechoice was 'a dream'.

It was believed in several groups that there were differentvalues in health agencies and, in particular, that services were more likely tobe imposed if the person was felt to be at risk. Turf disputes, mentioned bycommunity health workers, were also an issue for social workers. For exampleone person felt that in mental health,

'even the assessment side of it has been eroded by thehospital and the health board staff and what was largely a social work role hasnow been taken over by ward liaison nurses.'

perspectives of professionals in social work (II)

CPNs were also perceived to be taking on different tasks,leaving a gap in services in terms of supporting people and negotiating accessto services. Care managers felt that the fact they could not increase thebudgets available was poorly understood, by health workers for example, andthat they got the blame for lack of funding. This needed to be tackled, theysaid, by more discussion between the health board and the social workdepartment as to where monies should be directed. In several groups it was feltthat the boundary between health and social work responsibilities for carryingout (and paying for) tasks was becoming an increasingly grey area. An examplecited was the increasing use of home care staff to carry out paranursing tasks.'And this is something that has been quietly unaddressed by the healthboard.' There was a view that some general practitioners still had alimited view of care management and would refer someone to it as they did apatient to hospital.

One social work team reported a very poor relationship withhousing, even since the move to a single tier authority. Again this was partlyabout the lack of appropriate services, in particular for people who had hadalcohol and drugs treatment. 'We do a lot of work then just put them backinto problem areas.’ Basic services were one reason why healthpromotion was not on the agenda in one area.

'Just a case of holding the services together'
'All we can do is meet basic needs. We're not talking aboutquality any more.'

For some, health promotion was involved in the tasks theycarried out, such as advocacy and assessment. Others were reluctant to claimwhat they did as 'health promotion’, lest they were 'jumped on’' by health professionals.

Opportunities for services that would promote quality oflife were identified, for example in day care and in night sitting services.These services would be cost effective in the long run, by keeping people outof residential care but at present there were not the budgets to purchase them.An OT pointed out that equipment, such as hoists, played an important part inmaintaining quality of life for users and carers and was an area ripe for jointfunding. Better relationships through primary care, improved communication andjoint training were identified as routes to reducing tensions between healthand social care agencies in particular.

'There is basically not really a forum where staff likeourselves and district nurses would have an opportunity to sit down and discussthese issues, we do not link with each of the GP practices.'

The social work groups reflected tensions with health boardpractices and what they perceived to be the values of health agencies. Theproblems centred on budgets and communication. The similarities between theissues identified between the community health and social work groups are verystrong, indeed in preparing this report we had constantly to check who had saidwhat, and often were mistaken. This suggests that these discussions areoccurring in parallel and that the call for joint fora is very important tobuild up more common ground in identifying shared problems and solutions.

Local authority perspectives

Telephone interviews with 18 respondents in 14 localauthorities explored the extent of joint thinking and working on issuesconcerning the well-being of community care users and carers; the prioritieswithin community care planning; current issues in joint planning andpurchasing, in which we included questions about consultation and information;and, views on the responsibility for health promotion (see appendix iii forschedule). The interviews were conducted in the summer of 1996, soon after theintroduction of the new unitary authorities. They provide an insight into theperspectives of those planning and commissioning services. Two respondents werefrom Housing, one from Education and one was a Director of Community Services,the rest were from Social Work. One planning and commissioning team sent in itsown (collective) response. We had sought to identify respondents who would bethe best contact for community care, preferably with some involvement in jointplanning. If more time had been available we would have liked also to interviewsome people in Chief Executive Departments to get a sense of the priority ofcommunity care within the council as a whole. The responsibilities of thoseinterviewed were mostly strategic, with key roles in community care planning;job titles included Director (two), Assistant Director (one), and Head ofService (four); other interviewees were mostly in the role of Planning andService Officers. Remits were mostly across community care, with some havingresponsibility for a particular area, such as health or adult care.

priorities (I)

We wanted to get some sense of where those withresponsibility for community care felt it to be within the council’spolitical priorities and so we asked about the priority given to community carewithin the council as a whole. Some respondents did qualify their answers bysaying that someone else in the council, or even in the same department mighthave an entirely different view. In fact where we had two respondents from thesame authority their answers were in reasonable agreement. For only eight ofthe 14 councils where interviews were conducted did respondents feel able togive an answer and of these, five considered community care a high priority,two a ‘medium’ priority and one doubted the prioritisationbecause of budget cuts. Those authorities where community care was considered ahigh priority were those that had an agreed statement of priorities; for othersit seemed that the council was not at this stage of development. Within socialwork, on the other hand, there was little doubt about the significance ofcommunity care and a further three respondents answered the question from apurely departmental perspective.

'It’s at the top. We are preparing a major report onhow we will implement our community care plan.'

'Fairly high generally. Social work services generally are ahigh priority. The council has developed a range of, for want of a better name,'political priorities' which incorporates community care.'

'Within social work it's very high. Within the generalcouncil it's maybe middle of the road - maybe six on a scale of one to ten. Themomentum has been lost, we have had great financial difficulties which aretaking up the council's time.'

It therefore seemed as if, at the time of our interviews,social work departments had a task ahead to make a case to the new councils ofthe importance of community care. ‘We (Social Work) have a role toadvise on community care to raise the profile.’ The profile was likelyto be raised through community care plans, but a council that had seen thecommunity care budget cut hinted that public reactions to cuts might impact onspending priorities.

‘The Social Work Department which provides communitycare services had to absorb a 15% cut in the current financial year. It doesnot therefore appear that the council places community care very high on theagenda. The local community reacted strongly to these cuts in Social WorkServices and this may impact on the way future cuts are targeted.’

The early stage of planning in the new authorities wasapparent in the contrast between those departments which had inherited a clearvision for community care and those who spoke of it more in terms ofresponsibility for a major area of service provision. Rarely was a sense ofvision for community care yet seen to be part of the planning framework of thecouncil as a whole.

‘Vision - this would be putting it strongly, Regiondid originally. There is an understanding of what is trying to beachieved.’

‘Developing one at present. Social work clearly hasa vision, this will become the vision of the new council. Council iscurrently understanding community care - very few elected members knowanything about community care, it’s very difficult.’

priorities (II)

A question asking respondents to clarify the currentpriority community care groups, in terms of community care joint planning,proved of limited usefulness. Joint planning was at an early stage with the newcouncils and the planning partners were in the process of implementing existingcommunity care plans, while beginning to develop a new agenda. Older people wasthe most frequently identified group, followed by people with mental healthproblems, including dementia, people with physical disabilities and people withlearning disabilities. Carers were explicitly mentioned by two respondents. Amore complete picture would be obtained from community care plans. Of interest,however, is how the idea of priority groups was viewed. The sense from theanswers was that the priority groups (and some cited the full list of ten toeleven) provided a working framework for looking at needs, all of which shouldbe addressed, rather than there being a choice of strategic priorities.Priorities were legislative - and demand - led. Discharges and hospitalclosures were identified as driving priorities in two councils.

‘The broad priority has always been with older peopleand mental health. The priority groups select themselves due to currentlegislation.’

‘No stated priority groups - they select themselves dueto legislation, e.g. mental health. Broad priority has always been olderpeople, due to legislation. No explicit choices as far as Social Work isconcerned.’

Alcohol and drug problems were identified by two respondentsas high on the agenda currently and areas where more work was required. TheChildren Act was also noted as a salient issue which was focusing attention onthe co-ordination of children’s services. Key issues that emerged from theinterviews included: hospital discharges/closues; the definition of health andsocial care responsibilities; pressure on budgets; giving information to thepublic and user involvement.

A final question addressed the prioritisation (and naming)of values within joint planning. Did quality of life objectives feature incommunity care service planning and commissioning? Four council respondentsanswered very positively, others thought that the principles were expresseddifferently and others were unsure. Quality of life tended to be seen as ageneral principle equated with, for example, independence and choice.

‘Yes, very much so - underpinning principle’.

‘They feature in the process of care. They are notobvious, but they are there.’

‘Quality of life doesn’t feature in the plan. Wehave choice/participation. We recognise poverty.’

A senior purchaser made it clear that well-being or qualityof life was not what drove purchasing strategies, ‘it's there but itdoesn't feature high on the agenda in any purchasing strategy.' The kindsof issues that actually drove purchasing decisions were: the money available;matching health and social care needs and resources; where investment could befound; availability of providers, especially private; unit costs and whether aprovider was registered. Others confirmed that quality of life concerns couldbe marginalised in the tendering process. 'Quality of life issues need to beincluded. If it is decided on price, quality of life issues will be regulatedto insignificance'. Specific areas where quality of life objectives wereconsidered to be included were: strategies for people with learningdifficulties and for people with drug or alcohol problems (evidenced in theaction schedules under the community care plan); residential care anddomiciliary care. The processes by which quality of life could be addressedwere: commissioning quality services; registration and responsibilities forservice standards.

Quality of life did not therefore yet seem a significantbridging concept between approaches to the well-being of community care usersand carers. Most appreciated it at a general level but only in some councilswere needs or standards identified in this way. The priorities driving actionwere either legislative or pragmatic and opportunities to develop a quality oflife agenda would probably have to be seized within these more pressingconcerns, such as hospital discharge.

remits, roles and responsibilities (I)

Interviewees were asked about the role of the new unitaryauthorities in improving the well-being of community care users and carers; theextent to which community care was owned by various council departments; and,where responsibility for health promotion should lie. There was generalagreement, and some enthusiasm, for the idea that council services in generalwere there ultimately to improve people’s lives, but the terms‘well-being’ or ‘quality of life’ did not generally strikea chord except for those who had particular health-related initiatives.

‘Very much so. The new council pulls in variouselements of the previous council’s role, for example urban regeneration.We will work across departments to develop a corporate strategy.’

In particular, Health for All, was a term unknown to thevast majority of respondents, with the exception of councils within the area ofTayside health board, which had a Health for All initiative and councilsinvolved with Glasgow Healthy Cities. Tayside Health for All was identified byall respondents who mentioned it as led by the health board . For example,‘I also get involved in Tayside Health for All but we don’t lead onit. I still see this as a health issue.’ A broadly conceived remit inrelation to well-being was the exception rather than the rule.

‘Yes, statutory duties of social work, but there areother issues in terms of quality of life and promoting social welfare. Socialwork has a broader corporate remit in terms of promoting well-being: to improvethe environment, promote equalities; promote community safety, address drug andsolvent issues, promote healthy/safe communities and looking at the broaderstructural issues of inequality.’

Local government reorganisation was perceived to havecreated some opportunities to develop a more corporate approach among thestatutory community care partners. ‘It should be easier with the newerauthority, fewer people and a more compact geography, though this remains to beproved.’ For some disaggregating authorities, it was now easier tohighlight needs that had hitherto been masked within larger areas.

‘Easier as the joint planning structure hasgradually been implemented. Gains have included: better face to facediscussion; locality planning is providing more clarity on real needs; and,more manageable geographical area for consultation.’

For community care the potential for closer communicationbetween the key partners of social work and housing, now under the same roof,was seen as very positive.

‘There is potential in the fact that housing is nowunder the same umbrella. Social work now meets fairly regularly with housing.We are developing a common agenda and there will be more in future.’

In other areas there was a tradition of co-operation betweensocial work and housing on which to build, only now the organisational barrierswere reduced. One social work respondent said that people in housing still feltlike colleagues, but now they had the same employer, 'feels better now, lessetiquette.'

remits, roles and responsibilities (II)

Education was identified most frequently as the departmentwithin the council that should have stronger links into community care jointplanning.

'Education could give more time to it - we need theirinput.’

‘The Housing Department is part of the joint planningstructure but Transport and Education have not assumed any major roleand are only involved peripherally. Education has more involvement withservices to children with disabilities.’

In one council a community education input into adult carewas mentioned, but even so this had difficulties because it was not funded. Arespondent from education had experienced a marginalised role within jointcommunity care planning, but felt that response to the Children Act wouldrequire the development of a more positive relationship.

‘We had the offer to attend meetings. We went alongto one or two which we thought impinged on our area. We are only involved [injoint community care planning] on the fringes. Meetings are very much in asocial work context and language.’

This respondent identified some difficulties in developing astronger dialogue between education and social work, typified by different useof language.

‘Social work talk of "disabilities" , ineducation we talk of "special needs". The terminology is notpositive, nor does it find parental support. What we understand by thesedescriptions creates problems in an exchange of views.’

Transport was generally agreed to be very marginallyinvolved if at all. One council had had to side-step the transport departmentand was working directly with community groups and the voluntary sector on aninnovative transport scheme.

‘The main partner is housing. Education have a seatat the planning table. Transport is there at a peripheral level, they willmaybe come on board later.’

‘Transport - we haven’t involved them in any ofour working groups. We recognise that it is an issue, but we don’t haveformal involvement at present. This may change in future.’

‘Transport and Education play no role nor see any role.I’ve been struggling to get transport involved in barrier free access.They don’t play the game at all. They see community care as socialwork.’

One respondent identified transport as a key agenda itemthat still needed to be pursued, particularly in relation to the integration ofpeople with physical disabilities. Some also mentioned a role for arts andleisure. For example, ‘education, leisure and culture are being broughton board in implementing the community care plan’.

Apart from housing therefore, community care appeared to beperceived largely as a social work responsibility within the council. Issues offunding and separate organisational remits discouraged greater integration.There was no generally overarching framework of understanding or intereststrong enough to counteract these pressures.

remits, roles and responsibilities (III)

The expertise of health promotion was identified as havingrelevance to joint community care planning at certain points, but was generallynot a high priority. In one council health promotion was not formally part ofthe joint planning structure for community care but their expertise could besought by the strategy group, which did not have a fixed membership, as andwhen required. In another, health promotion was involved in some of the workinggroups which considered the needs of particular priority care groups.

‘Health promotion is not at the front of ouragenda.’

‘The authority is aware of it as something it could beinvolved in when required.’

One respondent who did see quality of life and health on thecommunity care agenda, nonetheless thought that the department and the councilwere not at the point of a health promotion strategy for community care.

‘The physical, emotional and mental state comes intoassessing needs and how you respond to those needs. But a health promotionstrategy? No.’

Quality of life and health gain was not yet embedded inservice specifications. There were different views about where health promotionshould be located. One person thought that the local authority should takeresponsibility, others expressed concern about it being 'out on a limb'if the Shields report were implemented. The most common view was that healthpromotion should be an integrated function across all agencies.

A key issue in planning services to improve the lives ofcommunity care users and carers was relationships with health care purchasersand providers. Whether reorganisation had made joint planning with healthpartners easier or more difficult depended on the council’s situation.Where the population of the council lived in more than one health board area,this made co-ordination more difficult.

‘Co-ordination between two health boards has provedvery difficult. We try to keep things at the same pace in the two board areasbut it is not possible to do that. But the range of differences between the twoboards in terms of priorities and different models of care is interesting forus to observe and learn, gain experience.’

'The health board now has to deal with three authorities,not something they welcome.'

In another area, where the respondent described thestructures as 'messy', there were five local authorities, one healthboard and 'one and a bit' trusts. The local authorities wereincreasingly feeling the need for individual meetings with the health board.

While greater face to face communication could be a benefit,it could also be a problem to find enough people to cover all the relevantfora.

‘I would have to say communication has been gettingmore difficult because of lack of bodies - our structure was flattened out,fewer people wear more hats.’

For one smaller authority, the situation was different.‘Easier to have better relationships with other agencies. It’s mewho goes to all the meetings.’ In the councils which related toGrampian health board there was a specific issue that the new councilsconsidered it to be important to give the provider trusts a seat at theplanning table, but this was not health board policy. For example, one councildealt with a trust which had boundaries that were coterminous with the counciland which provided both acute services and care for priority groups,

‘We were very clear that there should be a seat at thetable for the health trust in the joint planning framework.’

Some respondents picked up on the role of GPs withincommunity care planning and as purchasers and providers. GPs were identified asinvolved in community care working groups, for example on dementia, beingconsulted and taking part in an assessment of health needs. The strength ofworking links was reported to be variable.

'We're still working on links with primary care.'

'The relationship between social work and primary carevaries from area to area. In some parts GPs and social workers are onlyspeaking to each other to hurl abuse. In other areas there are good and warmrelationships.'

remits, roles and responsibilities (IV)

In our interviews we also explored the extent to which thepurchaser-provider split was structuring relationships between partners incommunity care and their perceptions of each other. There were very variablereports of the extent to which the purchaser-provider split had beenimplemented and was seen as desirable. The majority had only a partial split,some were not yet tendering at all, while others saw a separation asbeneficial.

'We're not into purchaser-provider spit in the socialwork department.'

'We're both purchaser and provider.'

'Tendering? Don't tend to use it, it's at the margins.'

But a respondent used to a regional authority which hadseparated out the purchasing function was very enthusiastic.

'Extremely beneficial in my view in terms of separating outservices. Enabled us to purchase exactly on client needs. We can ensurequality. We have a true mixed economy of care. We use private sector agenciesfor out of hours care. We have a strong voluntary sector across client groups.'

Not everyone was convinced that competition was whatdelivered choice to users and carers.

'The theory is that choice should expand. My experience isthat the element of choice is not between providers but through redress if youare not satisfied with services. Flexibility and continuity are the key tosuccessful services.'

Perceptions of the voluntary sector by local authoritieswere not always confined to seeing them as providers.

'We are trying to encourage voluntary organisations toprovide services, but at the same time are having to enable them. Often peoplein the voluntary sector have different views from us on what should beprovided, a healthy tension.'

The extent of the purchaser-provider split thereforerepresented another cultural difference between social and health services.Interestingly, a local authority respondent from education was particularlyconcerned at the purchaser-provider split in health.

'It concerns me that the whole area of health is pushedinto the purchaser-provider split. If you try to improve anything, people talkabout the purchaser-provider split. As an education department we are beingpushed towards purchasing, but we don't want that.'

Councils had different experiences in the strength of thevoluntary and private sectors within their areas and this affected the natureof community care consultation and planning. In one area a piece ofcommissioning work for a new service was described where an umbrella voluntaryorganisation was seen as providing vital links into voluntary sector networks.In another, relationships were more fragile. ‘The voluntary sector isstill finding its way in the new structures and planning agreements.’In similar vein there were accounts of good and long-standing relationshipswith housing providers, including private sector, whereas elsewhere this couldbe an obstacle. ‘Long history of difficulties between social work andprivate sector.’

The purchaser-provider split was thus only partiallyimplemented within community care and was not the only factor structuringinter-agency relationships.

ways forward

There were a number of ways in which closer joint workingand greater integration of quality of life objectives were being pursued atdifferent levels. These included structural organisation and corporate workingwithin the council; joint planning and consultative fora; purchasing andcommissioning; and the development of service standards. There were a fewexamples of local authority involvement in specific health-related initiatives.

One new council was developing a more thematic and acorporate structure with the intention of becoming more strategic. Social workand housing were in the department of community services, one of fourfront-line services departments, directors of which had to take on a moregeneric approach. The development was still experimental but aimed to lead toidentification of common areas, greater synergy and ‘economies ofintegration’.

Within joint planning structures for community care, therewere examples of multidisciplinary approaches in working groups for particularpriority care groups. A housing forum, which could involve statutory agencies,housing association and private sector providers, or a local community careforum which would engage voluntary sector networks were seen as routes todeveloping cross-sector involvement. Some planners saw an opportunity to takethe process of local involvement further with decentralisation plans.‘Part of getting closer to communities and listening to them.’

Commissioning from the voluntary sector a supportedaccommodation unit for people with profound physical and learning disabilitiesprovided one local authority with a good opportunity to build in somecomponents to enhance quality of life. Plans included therapeutic programmesincluding training in personal skills such as how to eat well, but quality oflife was more strongly represented as a general principle than in specificservice or contract elements. A good example of the use of health promotionexpertise was a proposal to develop a one-stop shop with some community carefunding, to provide, for example advice, a volunteer bureau and perhaps ahealth promotion presence.

The agenda of improving service quality provided, in somecouncils, an opportunity for looking at quality of life issues, and the agendaof quality seemed a more meaningful one than quality of life. Setting andmonitoring standards were ways of giving some reality to these objectives. Onecouncil in particular saw quality as one way to fulfill wider council targetsand to address the expectations of consumers, for example in respect ofservices for older people.

‘Quality of services underpins all we are doing. Itis too early to be driven by budgets. The range of services we currentlyprovide are not those we could provide to sustain quality of life.’

Increasingly, respondents suggested they were moving towardsfeedback on services and broader user strategies than bureaucratic consultationmechanisms.

While not common, there were examples given ofhealth-related activities being pursued within community care both at thestrategic level and in relation to specific groups and issues. One council,which had inherited good interagency policies and joint working on health, hada working party on health and had already held a seminar for politicians andofficers, and, following an exploratory meeting with the health board chair andgeneral manager, planned to involve the health board in the next seminar. Italso had ideas to implement ideas of a ‘fit workforce’ by encouragingwalking and cycling, for example. One interviewee from social work had a healthremit:

‘I think health is part of welfare and our role shouldprimarily be awareness raising...It is primarily about good health orientation,thinking.’

Examples which this respondent gave of possible activitywere: an educational role in respect of healthy eating with children, youngpeople and people with learning disability in particular and raising theknowledge and awareness of staff in day, residential and home-based services.The respondent thought that the kind of developments that might make adifference need not have major resource implications. Rather improvements couldbe made by implementing relatively simple suggestions such as a training auditof care staff providing meals, followed by in-house training. The interviewsalso suggested that structures of working which were horizontal rather thanvertical would make it easier to identify and pursue issues that were commonacross departments.

Some perspectives of health purchasers and providers

Telephone interviews were completed for four out of fivehealth boards and in the fifth a GP involved in planning was interviewed (seebelow). The interviews were conducted with, respectively: a purchaser for allpriority care services; two consultants in public health medicine who wereinvolved in drawing up strategies for priority care groups and a seniorregistrar in public health with a community care remit.

There were mixed responses to the question about theimportance of quality of life objectives for community care users and carers.At the time of our interviews the boards were going through a period in whichthere were some delays in joint planning processes because of local governmentreorganisation. The new authorities were causing some renegotiation of existingagreements which caused problems, particularly with bed blocking. Whilst therewere areas relevant to quality of life where work had been undertaken or mightbe developed, for example the prevention of falls in the elderly, commissioningmore appropriate services for people with learning disabilities or physicaldisabilities and developing strategies for people with dementia and drugs andalcohol, quality of life was seen more as a general value than as aspecifically useful tool. One person called it 'early days'. There wasinterest, for example, in knowing whether people were doing better in newsettings, but some doubt whether there were yet appropriate indicators forassessing outcomes in the community.

Health promotion was not perceived to be situated strongly,in an organisational sense, to take forward an agenda within community carejoint planning. In one board priority services were described as, ‘notquite off shore but not fully integrated with other aspects of the board'swork', while health promotion was described as 'fairly distant'.Another respondent recounted a failure to involve health promotion in jointplanning working groups because the health promotion manager had seen communitycare as service provision and not the remit of health promotion. A publichealth consultant involved in preparing needs assessments and health strategiesfor priority care groups found the organisation of health promotion nationallyinto settings a disadvantage. She believed she would have to contact four orfive different people in order to get input on alcohol and drugs, for example.

There was a difference between the perspective of thepurchaser, who was concerned to develop enabling services in day care andemployment, for example, and the public health specialists, who wereparticularly concerned with the health issues for particular care groups. Therewas clearly some involvement expected, despite the story told above, of healthpromoters as resources for developing the health strategies, particularly roundcertain topics and priority groups. It was less clear what role healthpromotion might play in the broader topics identified within the commissioningagenda.

The priorities which others had mentioned as driving healthboard energies were reflected to some extent in the interviews with healthboards themselves, as one respondent succinctly put it, 'setting up servicesin the community in order to close hospitals quickly.' At least obstaclesto the discharge programme revealed important truths about the development ofpartnerships around community care.

'The biggest issue [in relation to discharge] is theavailability of suitable housing and the identification of capital to provideand adapt houses. The housing agenda has been understated in community care.Housing was not as integral and mainstream to the process as it should havebeen.'

Not every respondent took full ownership of community careissues and here, relationships with social work were considered to be a factor.'Social work feel that these people are their responsibility.'

Interpreting the view from the health boards is notstraightforward, particularly since the people we spoke to had rather differentroles. Health promotion did not figure prominently as a resource forimplementing the dynamic commissioning agenda in community care. Those plansincluded goals that matched some of the expressed wishes for servicedevelopment of the users and carers we had spoken to. There were also othervery big challenges being faced such as identifying appropriate housing inorder to implement discharge programmes. From the perspectives of the publichealth medicine specialists, quality of life was important as a goal for thehealth strategies for particular priority care groups, but it did not provide avery clear sense of direction for how outcome measures should be specified.Moreover the course of putting strategies together was not helped by changeswithin local authorities and it seemed that the public health medicinespecialists felt that they were ploughing a fairly lonely furrow in relation tohealth strategies; in particular they had some difficulties in accessingappropriate expertise. It may be imagined that the differences in perceivedagency priorities and professional responsibilities, coupled with organisationfragmentation - 'I find it difficult to know who to talk to,' said onepublic health doctor of social work inspection units - might make it very hardfor a coherent approach to quality of life, embracing both social and healthdimensions, to emerge. Nonetheless the interviews showed that work does gettaken through the process, for example to plan and then commission appropriateservices in relation to people with dementia and their carers. The interviewssuggest that the process may make it hard to ensure that issues of quality oflife are consistently addressed across community care groups, except at a verygeneral level.

NHS trusts

We completed interviews with three NHS provider trusts, eachin a different health board study area. It proved difficult for some trusts toidentify an appropriate person to talk about issues in relation to healthpromotion and community care. Our interviewees were a Director of Nursing andQuality, a Consultant in Public Health and the Nurse Co-ordinator of aCommunity Nurse Team attached to a multidisciplinary primary health care team.One trust provided community services to the local board and to some GP fundholders for virtually all community care groups. Another was sole provider ofacute and community services in a small geographic area. The third providedcommunity services for many but not all community care groups. The local boardwas the main purchaser but there was also a contract with another neighbouringboard and some extra-contractual referrals.

The three trust interviewees were in no doubt that theirtrust had a role in promoting the well-being of community care users andcarers. This was seen as particularly the work of CPNs, district nurses andhealth visitors. Examples of relevant work included: looking at the needs ofcarers (in conjunction with the health promotion department), and resourcecentres providing multidisciplinary input for people with special needs.Similarly all considered that they provided health promotion to some extent,although relationships with the main health promotion agency locally differedsomewhat in configuration. One trust considered that, in addition to healthpromotion provided through the work of health visitors and CPNs, it providedspecific health promotion input in the area of HIV. In terms of prioritieshealth promotion was not high. 'Probably not high enough - basic care has tocome first.'

The trust had contact with one health promotion officer whowas involved with various groups in the trust, and would have liked more of hertime. They found the organisation of the health promoter's role in terms ofsettings an obstacle because she had to cover more than the NHS. This wasdescribed as being 'split between settings'. Another trust also took ageneric approach to health promotion, but it was concerned to see some outcomesestablished for the work. There were tensions in terms of the way thepurchaser/provider split affected health promotion, the respondent believedthat health promotion should be community-based and a resource that was neitherexclusively a purchaser nor a provider function. The third, smaller providersaw health promotion as sited within the board, yet one 'semi-detached' healthpromotion officer was sited geographically in the trust patch, so there wasgood joint working.

Current salient issues and upcoming priorities for thetrusts in terms of community care included: drugs and alcohol; thede-institutionalisation of people with learning disabilities and theinvolvement of primary care and community services in developing and improvinga cottage hospital. Views were mixed on the state of joint working and thesuccess of the purchaser-provider split. The trusts felt they should beinvolved in joint planning. 'We felt very peripheral to the joint plan; itwas social work and health board led'. In one area there were tensions withthe health boards around reprovisioning; in another relationships were thoughtto be good. Respondents admitted that there were gaps in community provisionbut were optimistic about new developments.

The issues of the boundaries between health and social careand of improving joint working elicited most passion. The fact that some peoplepaid for services and ohers did not caused problems for front line communityhealth staff who were asked to explain the situation.

‘There can be two people in the same street, onepays and one doesn’t. This is a huge issue for nurses because people asktheir district nurse what is going on.’

It was felt that issues were trickling down as a result ofresource decisions at another level and that health and social providers stillneeded to work at improving understanding of each other. All three respondentsidentified joint training as necessary to overcome boundary disputes betweenhealth and social care.

'It shouldn't be a monopoly. It's about timely referrals toeach other. We need to work through tribalism with joint training.'

One respondent was enthusiastic about the team-buildingtraining which health promotion had facilitated in her primary care team andshe suggested that such team building exercises needed to happen acrosscommunity care at all levels of the agencies involved in order to show that,‘we are not all in detached houses here but are living in acomplex.'

The trust interviews suggested that health promotion andwell-being are not yet seen as strategically very important within providertrusts. Yet it is regarded as a very important part of the work that communitynurses do within the community. Some links are being made to current pressingissues such as mental health and the discharge of people with learningdisabilities. There are instances of imaginative commissioning involvingprimary care and health promotion does have a presence in relation to specificareas of work. The division of health and social care budgets and the culturaldifferences between health and social work providers continue to presentproblems. Looking at the situation of different trusts it becomes apparent howcomplicated the mosaic of priorities is between priority groups, differentservice development objectives and contractual priorities. It seems hardlysurprising that it may be hard to locate health promoting goals and functionswithin these structures. Moreover health promotion is organisationallyseparate, though there are links, and can be perceived as involved in too manysettings to provide a consistent health promotion framework for different trustactivities in relation to community care and health promotion. As trusts becomeinterested themselves in providing health promotion the issue of training andof multiskill development may rise up the agenda.

general practitioners

Two general practitioners agreed to talk to us by telephone.Both were involved in community care planning, but each worked in verydifferent context, one in an island setting and one in a deprived urban area.

Their views of the style of health promotion encouraged inprimary care under the contract were remarkably similar. The approach did nothave credibility with them and the procedure involved was tedious. Onedescribed it as a 'tick box' approach which was a 'lostopportunity' and the protocol presented 'too much work'. The kind ofhealth promotion he had got involved with was encouraging patients to returnbags of unused drugs to the surgery. He had seen real opportunities for work inthe area of adolescent sexual health and linked this to a responsibility forchildren's homes in the area. He felt that the kind of projects that werecurrently wanted, however, were interventions to reduce blood pressure. Thesecond doctor had very similar views about the 'official' type of healthpromotion in primary care. He saw real health promotion as being responsive tolocal conditions.

'Primary care has no great love for health promotionafter the contract package, drudgery, filling in boxes, telling people off forsmoking, not a constructive approach. Health promotion needs to be tailored tolocal circumstances then I think people will see the sense in it.'

Both practices were closely involved with caring for theneeds of their patients who were receiving community care. In the urbanpractice the community psychiatric nurses attended the practice meeting everyother week to give an update on referrals. In the island practice CPNs werealso very important for people with mental health problems in the community;there was no psychiatrist there. The care of older people in the community wasa priority in both practices. In the island practice they were endeavouring toput nurses into local authority care homes and to bridge the cultural dividebetween health and social responsibilities.

In terms of key current issues both were affected byreductions in continuing care beds, although the circumstances were verydifferent. After local government reorganisation the urban practice faced thedilemma that the money from the closure of continuing care beds in a localhospital was now to be redistributed to several unitary authority areas,although patients from his area had accounted for a high proportion ofreferrals to those beds. A shortage of resources seemed very likely and it isunsurprising that he expressed serious reservations about the care of theelderly strategy. The general practitioner in the island setting described asituation of virtually seamless care between primary and secondary sectorbecause the GPs took care of patients in the wards. He therefore did not wantbed reductions because resources were tied to beds and so he would be caringfor patients amongst a scattered population without the resources.

The planning environments were different. The generalpractitioner in the island setting described the involvement of GPs at variouslevels in the health board. He did not mention social work. The urban GP didnot yet consider the joint planning process effective, he had attended a smallnumber of meetings at the social work department in relation to the elderlystrategy. He thought that GPs had not at first understood the implications ofcommunity care because at that time they had been concerned with the issuesaround the GP contract. The other GP stressed that in the island context it wasin any case their practice to keep people at home for as long as possible andthat district nurses had always played a central role in keeping people athome.

It would be absurd to generalise from two interviews to givea general practitioner perspective. The interviews illustrated the differencesin context that could exist within primary care. Nonetheless both doctors wereconcerned about resources for care in the community and both had little timefor the type of health promotion that was favoured under the GP contract. CPNsand district nurses were seen as essential for maintaining the well-being ofcommunity care users. Interestingly one GP had experienced community care in ajoint planning context and the other approached the area from a moreexclusively health board perspective.

The interviews with health board purchasers and providersindicate the complexity of the relationships around the joint community careplanning table. They confirm that all sides see continuing problems to beovercome in working across the health-social care boundary. Quality of life andwell-being are not major priorities, except as general values. Nonethelessthere are exciting possibilities for commissioning services that draw on inputsfrom different sources, including primary care.

Voluntary sector perspectives

A one day discussion day was held with participants fromvoluntary agencies. Ten agencies took part covering the interests of mentalhealth, physical disability, learning disability, carers and health; a briefingpaper was sent by an agency concerned with older people. Most participants werefrom national agencies; one agency represented had a statutory remit.Participants had been asked to prepare some comments in advance of thediscussion. They were asked about burning issues in community care from theperspective of their own agency and the people and issues they worked with. Avery lively discussion lasting several hours ensued. In the account of thediscussion given below respondents are not usually identified according to theuser group they represent, unless this is relevant to the point being made,because there was strong agreement across the different areas of need.

what community care should be about

Voluntary sector participants shared a vision of communitycare as concerned essentially with social inclusion and equity.

‘Yes we need legislation but what about socialjustice and what about the gap between where the legislation is and the finewords that we all use and social justice which to my mind is really what is atthe root of community care?’

A social model of disability challenges the medicalmodel traditionally applied by medical practitioners, health professionals andcharity advertisers which tends to portray disabled people as in need of‘cure’, with the implication that they deviate from the norm.

‘The Social Model of disability places the emphasison physical barriers and attitudinal barriers which convert an impairment (physical, sensory or intellectual) into a disability. Essentially refusalto provide access converts an impairment into a disability.’

There was strong support for the goals of community care.

‘We want hospital beds to be closed if it enablespeople to stay in their own communities.’

the experiences of the voluntary sector

A clear picture emerged of some of the tensions and strainsaffecting the field as a whole and the voluntary sector in particular. The lackof obligation on local authorities to provide community care services to agiven standard, under-resourcing and lack of interest or understanding in localauthorities about the impact of the market on the voluntary sector could resultin a dog-eat-dog scenario among voluntary providers and further loss of vision,values and services, as parts of the voluntary sector went to the wall.

‘I believe that the voluntary sectorcares what happens to the voluntary sector but the local authoritiesdon’t. They’ve never really had to, they’re not paid to, theyhave a different agenda. If by cutting budgets they create a war of attritionwithin the voluntary sector, well, tough. I don’t think it really mattersto them and I think it is for the voluntary sector to try and somehow emphasisethis element about caring.’

The disruption resulting from local governmentreorganisation had broken networks, for example those links established bygroups of people with physical disabilities, and was seen as further evidenceof the lack of steerage from the centre over implementation.

‘The new councils are taking uppositions as if there was never a yesterday.’
‘Mm, we’re starting from ground zero, aren’t we?’

It was argued that there was no level playing field, thatthe voluntary agencies felt excluded from the opportunity to contribute toplanning and disadvantaged in power terms in relations with local authorities.

‘The ones with experience are sitting outside and knockingto get in.’

'so they may not even get to the table unlessthey can meet the criteria set locally.'

‘I’ve never known such an unequalpartnership with one partner having all the power and all the money and theother partner waiting to see whether they’re actually going to beconsidered as having any expertise or knowledge or involvement inprovision.’

The results were that voluntary providers experienced a lackof recognition of their significance as providers of essential services andwere made vulnerable by instabilities that threatened their capacity to deliversustainable services to users and carers.

‘Voluntary organisations provide a hugerange of services which complement statutory services. Recognition needs to begiven to services which are run both by voluntary and paid staff in the sectorso that organisations are not subject to a see-saw of political decisions whichundermine their ability to provide services.’

The dependence of voluntary sector agencies on funding asproviders was said to have led to a climate of fear. ‘If you put yourhead above the parapet you’re an immediate target and funding is takenaway.’ A further consequence was felt to be a distortion of the natureof the sector. ‘The bigger you get the more like a statutoryorganisation you become’. The contracting process was experienced asbeing led by a purchaser mentality that emphasised the tangible types ofservice and outcomes that could be counted to the disadvantage of services suchas advocacy, and this cultural issue caused voluntary managers frustration asthey tried to argue for more imaginative services.

'The new councils as far as I can discern inmy area certainly are wanting to be able to touch, smell, hear, see the producethat they’re funding and when that goes into the advocacy sort of aspectsit’s so intangible that they can’t conceptualise the benefits comingfrom that and they can’t see the beans at the end of the processingmachine and are very reluctantly being dragged to fund some of thoseaspects.’

Contracting also brought up real issues of parity fornational voluntary organisations. If different prices were paid for services indifferent areas they might have to choose between accepting a contract toprovide services in an area and maintaining national parity in staff terms andconditions.

problems with community care

The current practice of community care was considered tofall short of the vision in many ways. A big issue was the failure toacknowledge the additional burden that the policy had placed on carers.The original White Paper recognised the importance of respite care, but it wasstill not adequately available and now might even be charged for, despite thehuge saving (estimated at £32.5 million a year) in the costs of the formalcare bill nationally made by the contribution of informal carers.

‘I’m sure if we actually had to vote for carein the community and the concept of it we would all think it was wonderfulbecause that’s what we want is to enable people to live in their own homesin their own communities. But taking it from the carer’s perspective Ibelieve that Care in the Community has now resulted in a huge burden, a greaterburden for carers than there ever was, because the deficit of what is requiredin services and what is provided is being met by carers.’

In addition to the fact that some basic elements ofcommunity care, such as respite, were not being provided sufficiently,the scope of community care was considered still to be disappointingly narrowand this was evidenced particularly in relation to assessments, forexample for people with learning disabilities. A narrow focus was seen to limitthe capacity of community care planning at the individual level to plan forlife needs and to impact on quality of life, and the way that the agenda ofassessment was set was reinforced by the types of services available.

‘One of the disappointments, I think, is thatcommunity care assessment basically hasn’t happened, and certainly one ofthe things it hasn’t done is take a longer term view of people’slifestyles, and looking towards the fact that somebody with learningdisabilities may not need to move away from his family now, but in two or threeyears time will be ready for it ,and now is the time to start planning that.That was something we’d hoped for from community care planning and it justhasn’t happened.’

‘the thing focuses on particularly beds or not beds,instead of looking at lifestyles and looking at much longer term lifeplanning, for people with learning disabilities in particular, because Ithink what we find frustrating is that what is not delivered by the currentarrangements are the sorts of things that are slightly peripheral, things likeemployment. We get day centres for people, but we don’t get them movingout of the day centres even into the community, let alone into employment whichis the aspiration of a lot of people with learning disabilities, and indeed, inpassing, has a lot to do with money, which is a big issue. We don’t see itdeliver things like friendship, there are a lot of people leading very lonelylives in community care. I have to say they’re better lives than theywould have lived in institutional care, but they’re still lacking a lotand, particularly in things like that, lives aren’t being enhanced a greatdeal by the current arrangements and that’s just frustrating I think.We’re not providing services that really do a great deal to improvequality of life.’

This was supported by recent research with 500 people withphysical disability in Scotland (Parkes and Merrells, 1996) which showed thatcomprehensive assessments were rare, as were benefit checks, and that there wasa strong emphasis on practical aids and adaptations. Another example given toillustrate an unduly narrow agenda was considering issues of age and disabilityseparately. These conceptual divides were seen to add to the problems oforganisational and professional fragmentation and to undermine the delivery of‘seamless’ care. One participant summarised this by saying thatcommunity care was falling short of the vision of a care continuum and thatthere was still too much fragmentation, diversity and too many boundarieswithin health and social care settings.

The inconsistency in service quality between areas,between providers and between services was felt to be unacceptable. This was anequity issue.

‘It depends where you live whether you see a goodpsychiatrist or a bad psychiatrist. People have a right to expect a qualityservice.’

Shrinking and uncertain funding was a barrier foreveryone in trying to deliver quality. ‘How can you plan services withuncertain resources?’

Like the users and carers we had spoken to, the voluntarysector discussants identified a deficit in the quality of informationgiven to users and carers. As with other areas, the sheer number and variety ofproviders was an issue. For example,

‘The quality of consumer health information at thepresent moment is pretty abysmal but there are voluntary organisations,statutory organisations and private sector suppliers of health information ofall sorts around at the moment.

The problems identified in implementing community care goalswere not confined to service deficits. Community attitudes had beenexperienced as a real problem in implementing hospital closure in the area ofmental health.

‘I mean certainly what I’m aware of with thehospital closure programmes is really the extreme hostility that we’refacing from local communities and what we’re facing is community non-care,that people don’t care, they don’t want to care, they don’t wantpeople in their communities and unless we actually do something in terms ofreally targeting work about inclusive communities, caring about communities,caring about the people who are going to be round about then I think the wholething in terms of mental health developments anyway is going to be a completeand utter disaster and it’s a disaster that is waiting tohappen.’

why community care falls short of expectations

The discussion analysed the reasons for the failure ofcommunity care to date to respond fully to the goals of policy and the needs ofusers and carers. The analysis of the policy framework was that community carehad been left too much to voluntary implementation by local authorities andthis, reinforced by lack of ring-fenced funding and inadequate strategicleadership, resulted in inconsistent prioritisation and mixed policy messages.The reduction of community care, a long-standing development, to thepost-Griffiths changes, contributed to a narrowing of the agenda. A greatershift in power towards the user and the carer would be needed to overcomevested interests and make services more responsive to need.

‘People making the decisions need to learn tolisten.’

'Yes they are consulted to death on the one hand and on theother they are absolutely marginalised from where the consultation and planninggoes on.'

Thus it was felt that local authorities could get away withvague language in respect to their service obligations, such as ‘in areasonable time’. Perverse incentives meant that service design was notbeing influenced strongly enough in the direction of good practice, so forexample thirty bed nursing homes were still being provided, even though peopletalked about individual support and care.

A major weakness, according to these participants, was theabsence of political debate about the key issues of the role of the healthservices and funding for long-term care. These issues were seen as having verywide ramifications throughout the system, blocking developments in the firstcase and causing huge public anxiety in the second. A national agency concernedwith older people flagged up this issue in a briefing paper prepared for themeeting.

‘Much more debate needed on financing long term care.Current proposed measures only meet the needs of a very few people.’

‘Real concern about the viability of private insuranceto cover continuing care - expensive; potential for too many exclusion clauses,leads to fragmented services and access to them for those who can afford topay.’

In the area of mental health a particular danger wasperceived that purely reactive policy-making, particularly in a context ofunder resources and lack of long-term planning, would result in steps tocontrol people even more. In the area of learning disabilities, hospitalclosure programmes could even be threatened with reversal if the bigger pictureof evidence that the lives of people with learning disabilities were better inthe community than in institutions, was forgotten because of short-termpolitical pressures.

The market framework, in which decisions about services werebeing made, was considered to be the force that was at risk of driving thevoluntary sector away from its role in development and advocacy and towards anarrower agenda of service provision.

‘That’s where in a sense we’ve lost ourradicalism that was to some extent the cornerstone of voluntary organisationsas well. And what’s happened is we’ve all been pulled into themainstream, we’re mainstream service providers and we’re not going tobite the hands that feed us and if we do we’re waiting for someone else tobite the hands that are feeding them. We’re waiting to go in and pick upthe pieces 'cos we’ll get more services.’

‘Evaluation and products are the key words as opposedto development and the type of inventive quality services that can arise fromthat.’

Moreover smaller, less formal voluntary organisations whichmight not meet the criteria for service provision, were therefore at risk ofcollapsing, reducing the choice for users and carers, while the situationencouraged competition rather than co-operation within the voluntary sectoritself.

At the organisational level the fragmentation in servicesstill experienced by users and carers was also attributed to the persistence ofvested interests, and to missed opportunities to share skills and knowledge.Separate registration of residential and nursing homes was cited as an exampleof an artificial and unhelpful division between health and careresponsibilities, which had no justification in terms of needs. These barriers,particularly in relation to the division between health and social care, wereoften resource-driven.

‘And I think what somebody said going round thetable about I think it was the health service having resources to work incommunities, yes, they do but they don’t actually have the communityknowledge.’

This again came back to the lack of an over-arching vision,a fixation with the problems of today and a failure to set clear priorities.The results for users and carers were thought to be piecemeal provision.

‘Bits and pieces of services relating to specificareas of difficulty but no overarching view of how people should receivesupport.’

some ways forward (I)

Discussants had some clear policy recommendations for makingthe reality more closely match the rhetoric in community care. Theserecommendations engage all sectors in responsibility for change.

Clear leadership and a framework that supported theimplementation of community care were seen as essential to enable change.

‘We could do it so much better. If we were led and theincentives were there to do so it could be good.’

Ultimately the safeguard of user and carer rights was seento be in legislative protection, the setting and enforcement of clearand consistent national service standards and recognition of theimportance of listening to the experience and expertise of users andcarers about services. Was the approach that good practice could be drivenby guidance and bottom-up development from the ground a sufficient model?Legislation might be necessary to enshrine the rights of users and carers andensure greater equity. A national community care charter was another mechanismthat could be used to insist upon common minimum standards, for access, forexample.

The Clinical Resources Audit Group in Psychiatry has set uppilots of user involvement in outcome assessment. One participants felt thatthis was a huge change which could

‘prove to others that the outcome of any type ofcare has to be measured by those who use or receive the services and not justby the professionals who guide and deliver them.’

With the explosion in information technology and theincreasing involvement of the private sector in providing information servicessuch as help lines, national standards are required for the accreditation ofinformation support services.

Empowering users and carers, for example by givingthem money to buy their own services, by making it possible for needs to beassessed independently or for users and carers to have a right to a secondopinion on assessments was seen as the way to shift the service agenda furtherinto a needs-led approach. Also relevant were providing real choices throughindividualised planning and the availability of an appropriate range ofenabling services

Greater strategic debate was seen to be required onfundamental issues such as the introduction of charges for services, paymentfor long-term care and the responsibilities of the health service, for examplefor people with dementia.

some ways forward (II)

A key target for change was attitudes. it was arguedthat attitudes need to change if people are to be accepted as full members ofsociety and not labelled. This requires education for the general public,development work in communities and changes to professional and institutionalpractices. An educational campaign, which it would be appropriate for HEBSto lead, was felt to be needed to influence general public attitudes.

‘It is somehow or other to inject socialresponsibility back into society to erode the NIMBYISM and the stigma ...Weneed to have a positive attitude towards health and a positive way, asupportive attitude towards people who are suffering any form of ill-health,mental or otherwise....Why can’t an organisation like Health EducationBoard, which is the only organisation I can think of which has the resources onevery level ... to work with the communities and to come up with something thatwill really make mental health a positive thing and that anybody whodoesn’t have mental health isn’t some sort of social leper? You knowit’s a massive education campaign.’

In order to counteract the hostility in communities thatleads to NIMBYISM (Not In My Back Yard) and hostility to the resettlement ofpeople who have been in hospital, agencies will have to work together, shareskills and resources, use the principles of community development and groundtheir own approach in the values of caring rather than of formal obligation.

‘How do we mobilise community knowledge, how do webring the different fragmented groups together and how do we work in a caringand compassionate way with people, how do we bring compassion back into whatwe’re doing?’

It was felt that the caring professions in both thestatutory and voluntary sectors should look to the way they treat their ownstaff if they are to deliver a caring service. There was also seen to be a needto support voluntary management committees so that they were not expected tofulfill all the functions of statutory personnel and finance departments.

‘The caring professions are the most uncaringprofessions to work in. I don’t think you can expect community care towork if you treat professionals so badly.’

Professionals can contribute to removing the barriers thatdisempower people with disabilities if they adopt a framework for practicebased on a social model of disability. Then they are more likely to identifysolutions at the societal, rather than the victim-blaming level. This isparticularly important for health professionals who may be undertaking healthpromotion. An example of the way in which health promotion could promotechanged attitudes would be to emphasise an anti-ageist approach to medicalconditions in old age.

‘The medical model of disability versus the socialmodel of disability, particularly in the field of health promotion, becausewe’re talking about health professionals who are so used to labelling theindividual as whatever they’re particular medical difficulty happens to beinstead of looking at it from the reverse side and that is, as a society webuild barriers and unless we address those barriers and remove and reduce thosebarriers we are continuing to exclude people. And it my view that certainlystarts to address the stigma that I’ve heard mentioned.’

some ways forward (III)

The structure of planning and consultation and therelationships of the voluntary sector and local authorities wereidentified as major targets for radical rethinking. Could the voluntary sectornot seize the initiative in order to broaden the agenda from short-termism andthis year’s contracting round to a wider agenda and advocate formeaningful involvement of user and carer perspectives?

‘If people won’t give us (the voluntary sector)a place at the table then we have to create our own table and invite people toit, to say let’s stand the planning framework on its head. Maybe we haveto turn the whole thing upside down and start again because I think theplanning framework quite frankly stinks.’

As a first step there has to be much greater clarity aboutwhat any particular consultation is for.

‘Somewhere along the line everyone who usesconsultation must start to define whether the consultation is to giveinformation, whether it is to enable consultation, or whether it’s toenable participation and unless we get clarity on that then there’s stillgoing to be confusion.’

The exclusion of key partners from the planning table of keyareas from the agenda has to be challenged from the basis of a broadunderstanding of the needs of community care users and carers.

‘Housing has to be brought up the politicalagenda to bring it home to politicians that it is a fundamental part of theservice across the entire spectrum in Scotland....Unless we can get housing upthe political agenda a lot of the aims and objectives of community care will bedefeated before they start.’

It is a mistake to fear user and carer involvement inservice planning on the grounds that it will result in opening an expensivePandora’s box of demands. People’s demands are often modest and mayresult in more cost-effective services which more closely match need. Theanecdote was told of a man who wanted a £300 bath put in and instead wasgiven a shower costing £3000 which he could not use.

‘I think that if people listen to what users ofservices actually say they needn’t be frightened of the costs which bringsme on to the other point about carers. We’ve known for years how muchcarers save the government in terms of paid professional care but if they justasked people what they wanted a lot of the time what people actually want is amuch cheaper option than what the social services and health boards areactually geared up and trained to provide.’

The voluntary sector, it was suggested, has to resist beingfragmented by a market framework that pits provider against provider and forcesthe smaller, less bureaucratic agencies to the wall. Local authoritiesalso have a critically enabling role here, through the criteria thatthey set for providers, the way they manage contracting and their willingnessto encourage the provision of imaginative services and accept the real costs ofproviding a quality services. Competition detracts from the voluntarysector’s other missions. ‘And that’s sad because we need tocollaborate and be the third force.’

A real difference could be made to the quality ofpeople’s lives and the choices available to them if there wereimprovements in the delivery of information and support. For example, a summarywas prepared for the meeting of issues of access as they impact uponequity for disabled people:

‘Access requires to be interpreted in the widestsense. Physical access, including suitable toilet facilities, is essential toparticipation by disabled people. Access to the spoken word should be providedby means of sign language interpreters and induction loop systems for peoplewith hearing impairments. Access to the written word should be provided bymeans of Braille, large print, audio tape or computer disk for people withvisual impairments. Spoken and written language should be kept simple toinclude people with learning disabilities. Audio tapes can also be useful topeople with learning disabilities. It should not be a requirement that serviceproviders should stock information in different formats, but it should be arequirement to have a commitment to provide information in different formatswhen requested to do so.’

In summary, participants concluded that making a reality ofthe vision of community care will depend on the strategic leadership to makeadequate resources available; enforceable national standards; changes inattitudes in the way we value all members of our society; changes in practiceto make choices and opportunities available on the basis of equity; the poolingof skills and resources between agencies and professionals to support localcommunities and more equal partnerships between sectors in which the interestsof users and carers are made central, rather than depending upon the exigenciesof the market and the defence of historic or vested interests. The discussionshowed that a purely market agenda is felt to make partnerships between localauthorities and the voluntary sector more difficult and to create competitionwithin the voluntary sector which is believed not to be in the public interest.There are exciting opportunities for seizing a best value agenda withincommunity care and for enhancing the attention paid to enforcing quality ofservices.

Perspectives of health promotion

Health promotion specialists from 11 of the 15 Scottishhealth boards attended a discussion day in Glasgow and a specialist fromanother board was interviewed individually. We had asked that the personattending from each department should be the officer whose remit was of mostrelevance to community care. At the discussion day only one person had a remitspecifically for community care. There were in fact only two boards in Scotlandwhere such roles existed at the time this research was carried out. Two ofthose attending had a strategic remit, most were senior health promotionofficers with operational management responsibilities. Their remits wereorganised in a variety of ways including: settings; an area basis; and, topics,with responsibilities for generic area based staff. For the first half of theday the group discussed the opportunities and obstacles for developing healthpromotion work within community care. In the afternoon, discussants worked ingroups according to the nature of the area they worked in (rural, city ormixed) and considered three questions: the support needed to take forward workin this area; where limited resources should be targeted in relation to healthpromotion and community care; and, recommendations for the focus of a nationalhealth promotion strategy in relation to community care and of the work of theHealth Education Board for Scotland with health boards.

priorities

Health promotion was not believed to be a priority withinjoint planning for community care. 'Health promotion seems a bit of aluxury.' 'Health promotion is sidelined.' Moreover people experiencedconflicting priorities within departments that made it harder to develop thiswork.

There were particular areas where discussants had hadexperience of developing health promotion work within community care. Theseincluded positive mental health, alcohol and drugs, people with HIV, learningdisabilities or physical disabilities and older people. This broadly reflectswhat we had heard from local authorities and boards about the areas in whichhealth promotion had to date been considered in care group strategies. Theorder in which priorities could be tackled did depend in part upon the state ofdevelopment of care group strategies.

In addition to topic based work, health promotionspecialists saw opportunities to develop broader work. One department,for example, had carried out a tracking study of public attitudes to mentalhealth. In terms of settings, primary care was identified as a useful entrypoint for developing positive health promotion in relation to community care.Some considered that health promotion would have to work with community care ata strategic level. The key role that could be defined here was in training,with health promotion taking a 'training the trainer' role in relation todeveloping health promotion within community care. This might entail a fulltime training post in health promotion for community care at board level.

roles, responsibilities and remits

A major obstacle to developing a greater focus for this areaof work was that of resources. Community care was just one area ofresponsibility for the great majority of health promotion specialists - 'oneeighth of one person to look at community care' - and the broadness of theagenda within community care made this problem more difficult. It explained whypeople might decide to work in one area, such as mental health, and hope tobroaden out later. The variety of ways in which health promotion itself wasorganised might be making it harder to raise the profile of health promotionwithin community care joint planning structures. Added to this, localgovernment reorganisation had created uncertainty in structures and networks,although this could be seized as an opportunity to do away with separate healthalliances and make sure that health promotion was fully integrated within jointplanning structures. At the time of our discussions there was also concern,following the Shields report, about the future location of health promotionitself within the NHS internal market.

Obstacles to better mutual understanding between the fieldsof health promotion and community care existed at the levels of philosophy,language, practice and skills. In particular understanding of 'health'and its determinants was not felt to be common ground and this created problemsfor identifying the outcomes of services and practices and demonstrating thevalue of particular activities. Health promotion as practised within otheragencies was not felt to reflect the 'state of the art' in practice and thisraised issues about remits and skills. On the other hand many opportunities forrapprochement were identified. These included common concerns with values suchas independence; an interest in individual need and local assessments of needswhich would highlight broad health-related issues.

increasing the profile and strategic impact of health promotion in community care

A key task which emerged from the earlier discussion was todemonstrate the benefits of positive health promotion and primary preventiveapproaches within community care. Promoting models of good practice was one wayto achieve this. It was suggested that criteria could be developed for ahealth promoting model of community care, along the lines of the healthpromoting school model. Demonstration or pilot projects could be set up toimplement the model in a variety of care groups and settings. Another route wasdeveloping more effective links and feedback between needs assessment, researchand monitoring and commissioning. This was important to address the confusionthat was felt about the possible benefits of, and indicators for, healthpromoting approaches.

'What's missing is the link back to complex informationto inform commissioning. They don't use that information. So you don't get thequality standards that you need and you get excluded from the process.'(interview)

The types of support which health promotion specialistsidentified as needed to help develop work in the area included the sharingof practice, information and ideas, through workshops for example,'learning from peers at days like today'. Participants felt that therewas a need for a forum in which health promotion could be debated withincommunity care and identified local community care fora as the possible groupswithin which to take this forward. HEBS was considered to have a role infacilitating the exchange of information about the ways in which healthpromotion specialists have supported community care. Examples would be positivemental health promotion, work on carers and work on helping older people tostay active.

The second area was ensuring the dissemination and feedbackof information and research, including the present study. This was linked tothe recommendation to develop demonstration projects. In order to raise theprofile and influence of health promotion approaches within community care moreinformation on health gain was needed to demonstrate the value of thesuggested approaches to purchasers. There were also specific information gapsin the area that could be filled, for example resource packs for people withlearning disabilities.

Leadership at the strategic level was agreed to beessential to help move the area forward. Positive mental health should beaddressed at the national level as a strategic priority. Links should be madenationally by HEBS with Directors of Social Work to make the case for theimportance of health promotion within community care and HEBS should work toinfluence the Scottish Office and health board general managers to addresshealth promotion issues in community care. One board had found that a strategicplanning team for health promotion to prepare the health promotion chapter ofthe joint community care plan had legitimated the health promotion role withinthe joint planning process. The Community Care Implementation Unit at theScottish Office should consider the minimum health promotion provision thatshould be in service level agreements and there should be ring fenced fundingto implement this. Health promotion specialists recommended a multilevelapproach to developing work in this area in which research contributed todevelopment work; dissemination extended into other agencies; and, for thespecification and tendering of future work to be underpinned by partnerships.Resources needed to targeted more on actions to raise the understanding ofwell-being within joint working.

The discussion day revealed that there was a risk thathealth promotion within community care could be subsumed under a myriad ofother agendas and lost in a complex matrix of organisational relationships.Linking topics, settings and priority care groups presented a challenge,especially with scarce resources. Simplification of structures and approachesmight be needed in the interests of integration. Yet this was not a pessimisticday. There was agreement that it was possible to identify overarching themes,such as positive mental health promotion, that could provide a focus fornational and local strategies in relation to health promotion and communitycare. There was, incidentally, a strong plea that there should be co-ordinationand synergy between national campaigns and action at local level. Strategicleadership was considered to be essential if the profile of health promotionwas to be raised within community care and the solution for health promotersthemselves might be to work at a strategic level within community care,offering a 'training the trainers' function.

A clear number of action areas were suggested which relateddirectly back to the potential weaknesses identified. Information about healthgain had to be addressed in order to inform the commissioning process. Models,perhaps involving demonstration projects, were needed to demonstrate the linksbetween positive health and the goals of community care. Training betweenagencies was a priority to try and arrive at a common understanding of theremit and methodologies of health promotion as a basis for identifying areasfor skills development and specific work. We can perhaps summarise thediscussion by a quote:

'How can health promotion add value to community care?
'Get concrete, get specific. '

Perspectives of health for all participants (I)

A discussion day was held inGlasgow with individuals from a number of Health For All initiatives inScotland. Unfortunately not everyone invited was able to attend. Theparticipants were: the co-ordinator of a well established urban Health for Allinitiative; a local government officer; the co-ordinator of a centre forwomen's health; the worker and two women involved with a community healthproject and a newly appointed officer for a Health for All initiative.

Health for All is action across sectors on the determinantsof health in the widest sense, including income, food, shelter and socialparticipation. It focuses on equity and aims to link action at the strategicand the local community level. The key principles of Health for All arecollaboration, participation and empowerment. It was intended that thisresearch should draw on the experiences and framework of Health for All actionand policy development in Scotland, including healthy cities.

The first part of the day drew on the experiences ofparticipants to help identify issues in linking together the areas of communitycare, health promotion and Health for All. In the afternoon the group watched atrigger video of a local community organising to prevent the opening of ahostel for people discharged from a psychiatric hospital and then discussedstrategies and responsibilities for action to develop inclusive communities.

Considering issues from theperspectives of communities, and not only community care, a range ofbarriers to fair shares in a good quality of life were identified. Theseincluded lack of information, lack of local opportunities in terms of jobs andservices (inequity) and attitudinal barriers. A needs assessment carried outfor a community health project had identified problems with unemployment andlow income; access to health facilities - the hospital was at a distance andthe health centre 'away down the hill'; stigma, in that people thoughtthat the area was labelled; lack of places for people to go and talk; a needfor young people to inform themselves about drugs, alcohol and sexuality andlack of money to take up other opportunities that people were interested in,such as counselling and complementary therapies. They had carried out a needsassessment of gay and bisexual men and found that, in this rural area, theyexperienced isolation and stigma and had no place to find information. Thecentre for women's health identified three levels of barriers that women faced:attitudes, physical barriers and language.

In some respects the way that community care has developedso far can add to the barriers experienced. It can compound inequity becauseresources are not available to meet the needs identified. 'What's drivingthis? What's driving national policy? Better quality care or to get costsdown?' Focus on priority groups may increase compartmentalised thinking andstigma. We may need a broader approach to engage other agencies and to tackleissues such as poverty amongst community care users and carers. For example,'here are some lives damaged in particular ways. How do we deal with that.How do we put resources together to support that person's life?' It wouldbe wrong, however, to be dismissive of community care. It was noted that aCentre for Independent Living illustrates a model that can empower disabledpeople by training them to be employers so that they can have choice andcontrol the care provided to them. This was cited as an example of the socialwork department (the funder) giving power away.

Health for All participantsoffered examples of work they had been involved with that exemplified thestrategies that could be used to broaden out the health agenda and take onboard issues of equity and social justice. Examples of joint work on some ofthe fundamental prerequisites for health, income, food and shelter, includedmaximising income; employment and training initiatives; work in conjunctionwith a poverty alliance on access to affordable food; a healthy eating pack forpeople with learning disabilities; work with a national charity on action forwarm homes and work on a special needs housing strategy, looking at needs interms of health and well-being.

Work through training and public informationcould promote health at three levels: individuals, workers and strategic.Information units in social work departments had good potential to improve theinformation about community care. The healthy city project had supported ahealth working group which had been a way to increase the information flow tostatutory fora. There was discussion of the kinds of information needed tosupport policy change in the context of the health service moving increasinglytowards evidence-based approaches and with a stress on value for money.Information on the impact of developments in different sectors on health andwell-being needed to be bought together. There was also a need to advocate forthe user voice, for qualitative measures and to allow the stories of people'sexperiences to come through to policy makers and into the political arena. Likemany other groups the Health for All participants said that the case had notbeen made strongly enough that small changes could make big differences topeople's everyday experiences, especially if they were poor and marginalised.'If you haven't got much, it doesn't take much to make your lifebetter.' The needs of people in black and minority ethniccommunities exemplified some of the barriers to equity that existed. Toooften the view was taken that people should be expected to advocate for theirneeds, for example in consultative fora, rather than policy and services takingthose needs on board and incorporating them in service standards, for example.

Perspectives of health for all participants (II)

In communities the group thought that it was essential tohave development work that took on board 'what happens every day incommunities'. Supporting people in the community went far beyond the workof statutory providers of community care. If vulnerable people were placed incommunities without that community being supported, that might not be theelasticity in that community to understand, to accept and to care. The bulk ofcore and cluster units in one city had been placed in peripheral estates. Womenand volunteers were having an increased burden of care placed upon them. Othercommunity services, such as library, buses and parks were needed to supportquality of life but were at risk of being cut back. There was no integrativeview taken that perceived the relevance of these other public services tocommunity care and to the maintenance of community. The group recommended thatanti-discriminatory work be taken into local communities at grass rootslevel. A demonstration project for positive discrimination in a local communitycould be developed and the community enabled to take ownership of it. It wassuggested that health promoters could listen to the experiences of statutoryagencies, such as social work, that had track records in working with localcommunities. In any event it was clear that there would need to be skillssharing between agencies to make such strategies work.

At national level this group, like others, raised the issueof the need to challenge and change public attitudes to people with mentalhealth problems and learning disabilities in the ways that campaigns in the1970s had tried to change images of physical disability. This was seen as anissue for everyone, including the Health Education Board for Scotland. Oneperson pointed out that changes in attitudes and behaviour could be achieved -it used to be acceptable to drink and drive. Perhaps it would even be possibleto change the image of community care! This group saw a public awarenesscampaign as a necessary but not a sufficient strategy. Campaigns had to be abackdrop for local action.

By taking an equity focus, the Health for All groupfound themselves addressing many of the issues raised in the user and carerfocus groups. Experience suggested that there were strategies that were knownto be effective in improving the well-being of people who were marginalised andin poverty. Health had been found to be a useful framework for anti-povertywork and community care networks might find that a focus on health andwell-being and their links to equity could raise some of these issues togreater prominence within the community care agenda. The group pointed out thatlocal authority social work departments have experiences in community work thatcould be utilised. This group agreed that a massive change in public attitudeswas needed but was also strongly of the view that caring and even survivingcommunities would not come about without support and development work at thelocal level. The links need to be made, they suggest, between other plans forlocal communities, including the implications for the availability of publicservices and the responsibilities that people in communities, and particularlywomen, are being given under community care.

Issue-based perspectives

Five groups, one in each studyarea, were set up to involve a mixed group of participants and to address anissue that cut across the interests of particular agencies and groups. Theissues selected were: information; leisure and recreation; poverty; and,education and training. It was hoped that the groups would help us to identifythe scope for inter-agency action, as well as to map the problems in the givenfields. The groups complemented the national perspectives of the discussiondays through local recruitment.

information

The group involved eight participants from a range ofstatutory and voluntary agencies. The group’s discussion exposed thecultural problems that underlay failures to provide information and agreed onthe need on proactive information-giving strategies. There were differentperspectives within the group but several strategies for change nonethelessemerged.

Various members of the group identified strong culturalbarriers within health and social care agencies to an open approach toinformation-giving. Within the health service, traditionally, it was arguedthat there had been a reluctance to raise expectations in case theycould not be met.

‘The health service has been very bad at promotingthe services it provides in the past, for a number of reasons, but one of themundoubtedly is that it generates demand which costs money and raisesexpectations. And there’s a dilemma there for the statutory agencies topublicise all the things that they hope to do in the joint community care planin a proper fashion because it raises expectations and I suspect you’llfind that there’s a whole lot of demand for services which are out therebut haven’t been actually tapped.’

Other obstacles in the health service were issues ofpower, for example when a person visited the general practitioner and aculture dominated by professional values.

‘I think the problem is that it’s a veryprofessionally oriented organisation and one where patients come in to getsomething done to them, and there’s almost, well there is actually, acultural attitude within the NHS which stops people from demanding better.It’s partly because people think that nurses are angels and doctors aresaints, and that you ought to be grateful, and I think that in my experiencepeople put up with a lot more in the health service than they would ever put upwith if it was a housing authority or some other public body.’

In social care agencies information had not traditionallybeen a major priority compared with other service provision. Yet, for aservice that was not universal it was even more important to explain what wasavailable and how. ‘There are no user committees of social workoffices.’ There was concern that the most vulnerable people wereexcluded from information-giving, for example when there wereconsultations. The community care plan was a case in point.

‘As organisations we tend to put our information intoA4 size sheets of paper that’s in English and small print, so immediatelyyou exclude a whole range of people who don’t read English, who don’tread small print, who don’t read at all, who require interpreters etc.etc. so we tend to exclude some very vulnerable people in a documentthat’s addressing needs of vulnerable people. And while we’veaddressed that to a limited extent in trying to translate some of our writtenmaterial into other languages, it always comes out six weeks later, or eightweeks later, or twelve weeks later, so the process of putting information intothe public domain is a very slow one. We don’t resource ourselves wellenough to do that.’

Rapid organisational change could, it was argued,disempower professionals as well as users and carers, with respect toinformation.

‘So on the one hand we’re trying to establish agood basis for sharing information produced in relation to community care onthe other hand we are trying to deal with local government reorganisation whichhas ripped out some of the players and some of the remits that are available.‘

The group felt that information had to be tackled in aproactive way. A range of mechanisms were identified that would gowell-beyond giving out leaflets. ‘The production and the delivery ofinformation isn’t the end of the process in fact really it’s thestart of the process.’ One area of work was in challengingattitudes of hostility to community care users in local communities,‘there’s an issue of selling what kind of community it is to thecommunity and this still has a long a way to go yet’. Another wasworking with local groups and networks.

‘Much of the point is probably lost in thetranslation as well what you are trying to get across so they’d be best tocontact the different organisations the community groups and ask for their helpand see what they need and how best they can help you in translating andgetting the point over to the different sectors of the public in communitycare.’

One person suggested that independent advocacy wasthe real answer to supporting people to get the information they needed, forexample, through the process of being admitted to a nursing home. There was noone body that fulfilled that function for community care users and carers.

‘The local health council, they represent the views ofthe public if you like within the health sector, there’s no equivalent inthe social care sector at all, there’s no representative body thatrepresents the views of service users across social care.’

Information was considered to be a priority which should notbe marginalised as an extra.

‘I think too we also don’t provide enoughinformation for our staff because in effect our staff are our biggest resourceand information’s passed by word o‘ mouth more than it is by bits ofpaper and I think that we haven’t invested enough in telling front linestaff what’s actually happening so that they’re aware ofchanges.’

Information was an issue for which many agencies had to takeresponsibility: statutory agencies, the voluntary sector; managers (in costingit into new services); professionals and user and carer groups. The result ofbetter information policies would be more efficient and better targetedservices.

‘It requires a huge cultural shift for the statutoryagencies but also for individual users and carers because they should be sayingto themselves I no longer need to be passive, I have every right to voice myview and to be empowered.’

leisure and recreation

This group was unusual among the issues groups because itfocused on the issue particularly from the perspective of people withdisabilities. The group employed a broad definition of leisure which embracedsports and all types of art activity.

Access was a major issue identified by the group. Accessproblems included the problems of adapting old buildings, which might even belisted, as accessible arts venues.

‘The biggest issues from our point of view are thefunding of arts projects, linked with the accessibility of resources, linkedwith the transport to and from the venues.’

Transport was an essential part of the equation whenit came to people’s participation in leisure activities, including goingon holiday. Other, more intangible barriers, might include perceptions of therisk of having disabled people present (citing insurance, for example).

The group provided many cogent examples of failures ofimagination in design that could often have been inexpensively remedied butwhich inhibited the participation of disabled people in an activity. Earlierinvolvement of users who could have pointed out the difficulties could haveavoide