Introduction
In this chapter major the findings of the study will be highlighted so that a reasoned evaluation can be made of
information-bases on mentally handicapped people as planning tools.
The Feasibility of Registers
The compilation and maintenance of registers is relatively uncostly in terms of manpower and expenditure. A variety of data-collection methods have been used; but all of them have been relatively successful at keeping registers sufficiently accurate and up to date. Registers have mainly depended on the cooperation of different professions and agencies in the provision of data. By and large, this cooperation has been forthcoming. This may be surprising in view of the evidence of lack of ccnntunication between the various parts of the mental handicap service at the level of service-delivery. Hcwever the periodic supply of data on clients to a different agency or a remote part of one's cwn is no great burden. It is largely unaffected by the differences in ethos, organisation and funding which so afflict attempts to work together in planning services. Moreover the cooperation between different parts of the service in the provision of data m y be seen as a result of the recognition of the importance of cooperation at the operational level which has led to the formation of CMHTs.
Mental handicap registers are the only widespread data-bases holding both Local and Health Authority data (Glennerster et al, 1983, p. 272). Their performance suggests that information-bases on
other client-groups holding data from the same sources could certainly be maintained with a high level of cooperation from the staff called
upon to supply data.
Though many registers currently in existence technically involve breach of confidentiality, same of the suspicion of registers as information-bases potentially harmful to their subjects is unjustified. Computerisation can make data more secure; danger of stigma from inclusion can be substantially lessened; and informed consent to registration will not only remove the main source of breach of confidentiality but also much of the suspicion that subjects and their families might otherwise have of the register.
The Benefits of Registers
There is no doubt that registers have a potential for directing plans to the needs of the target population which fully justifies the resources of money, time and manpower put into them. This applies whether registers hold only a minimal data-set, whether they hold items of data with little application and whether the district concerned has a complete lack of mental handicap services.
Most Authorities have had, and continue to have, as a medium - or long-term aim - the creation of a new mental handicap service. This will require a shift of resources affecting the lives of hundreds of people. Great opportunities could be missed and funds wasted with effects which would last for years. Against this background the costs and drawbacks of registers are small and benefits that they are capable of conferring are large.
However the degree to which registers have realised their potential for contribution to the planning process has been mixed. To some extent this has been a result of their novelty; but the essential
reason is that the changes in organisation and attitude which have made their emergence possible have not been widespread or deep enough
for them to be fully integrated in the planning process.
The first and third chapters described some of the pressures which have led to the formation of registers. There has been greater emphasis on rationality in planning with more attention paid to objective factual data on service delivery and to social research. There has been a movement towards joint planning with much of the pressure coming from central government. These developments have made those involved in planning and management more receptive to the type of quantitative information supplied by mental handicap registers. However conflicting attitudes and organisational arrangements remain. There is still a reliance on the inpress ions of professionals and DHSS norms - sometimes to the exclusion of statistical data on local need; and planning is still conceived of in non-numerate terms. Attempts by the DHSS to induce Authorities to plan jointly through Joint Finance and the requirement to establish joint bodies may sometimes have led to the formation of registers; however such external pressure has not been sufficient to produce genuinely collaborative bodies which have systematically and camprehensively planned mental handicap services. Joint planning tools require effective joint planning bodies. But as such bodies have so seldom existed, a number of registers have held data which have been neglected.
In short, the two large-scale trends mentioned in the first chapter - recognition of the importance of planning and recognition of the need for lessening the fragmentation of the welfare services - have been strong enough to lead to the setting-up of registers but often not strong enough to ensure their integration with the planning process.
Different Types of Register in relation to the Provision of Cannunity-Based Services for Mortally Handicapped People.
Very broadly, registers may be divided into one or other of the following three types:
1. Those whose staff collect information by scanning case-notes and talking to professionals and perhaps clients and their families.
2. Those which call upon staff in the field to send written updates to the register staff at regular intervals.
3. Those which receive information through data-generating processes which have functions as well as that of providing information to the
register.
The third category of register is the most recent and has the most cost-effective method of data-collection. It consists essentially of registers based in CMHTs which feed off the records made by CMHT-merribers for the purpose of individual casework and regular multi-disciplinary reviews. Such registers are most in line with current thinking on mental handicap which stresses small-scale de-centralized conmunity-based services (Hadley and McGrath, 1984). Though more research into their operation is probably needed, their integration with the work of CMHTs in service-delivery is likely to be linked with a close involvement in decisions about the future development of the activity of the Teams. Registers based on CMHTs have therefore • probably the greatest potential.
The Inplications of the Performance of Mental Handicap Registers for other Client-Based Data-Bases
Many of the pressures mentioned in the first chapter have made themselves felt in other areas of activity of Health Authorities and Social Services Departments. Registers of the elderly and of the
physically handicapped and child health registers - to name but a few - are being established in ever-increasing numbers as tools for service-planning.
Perhaps the most important development has been the recomnendation of the Steering Group on Health Services Information (Chairman: Mrs'. E. Komer) that more extensive data-bases on patients be formed throughout the Health Service. The data-sets recorrmended are intended to generate statistical information (NHS/DHSS Health Services Information Steering Group, 1982, Section 1.5 and 2.1; and Steering Group, 1982, Section 1.1 - 1.3, 1.10 and 5.10). However the Group recognises that’ this has been underused in the past:
"Though much lip-service is paid to the crucial and central importance of high quality statistics, few Health Authorities management teams or heads of department currently analyse data expertly, present them informatively or use them intelligently in the performance of their management task. Despite certain acknowledged inadequacies of the NHS data systems, far greater use could be made of existing statistics. As an inevitable consequence of infrequent use, the accuracy and general quality of data deteriorate and the timely production of outputs is neglected."
(Steering Group, 1982, Section 1.3)
The Group also recognise the importance of ensuring that information derived from their recommended data sets are used to make decisions about the allocation, planning and review of resources (Steering Group, 1982, Section 1.21).
The strategy adopted by the Group has been first to review and improve current statistics and then to instigate a major drive to promote better use of information (Steering Group, 1982, Sections 1.10 and 1.15). The first stage is still in progress.
By and large statistics on patients are now being collected in the Health Service primarily as a means of monitoring the performance of individual members of staff and completing DHSS returns. Since the
data collected are geared to DHSS returns and the evaluation of indiviual staff performance they are not ideal as a basis for service-planning at district level. On occasions, therefore, their implications for planning and management have perhaps understandably been neglected. The implementation of the Komer reconmendations will resemble the establishment of mental handicap registers in that those in charge of the service will be presented with a mss of statistical data with planning inplications which they will not have had before cm the same scale. This evaluation of mental handicap registers points to the importance of taking measures to ensure that the resulting data will be used. It is, therefore, regrettable that the Reports of the Komer Group and the training-material produced so far give little guidance on the use of data. The Komer Group might respond by pointing out that in the second phase of their activities they would attenpt to educate staff in taking advantage of the data available. Before this, they would claim, it is necessary to set up a satisfactory data-base. However the delay in starting a systematic programme of training mnagers and others in the use of data could well mean that in the first few years after the implementation of the
reconmendations of the Group data would be under-exploited.
The lesson of the experience of mental handicap registers for the implementation of the Komer reconmendations - which will be a major task for every Health Authority in the next few years - is clear: strenuous efforts in both training and organisation will need to be made to ensure that Komer data are not neglected in the planning process. This lesson applies not only to the establishment of data-bases in line with the Komer requirements, but to data-bases of all other types which are being set up as aids to planning the Health and Social Services.
Are Registers Worthwhile?
It is difficult to make an overall assessment of mental handicap registers as information-bases for use in the planning of services. However it can be said that outside planning registers do not have any serious flaws: they are relatively uncostly; they have usually overccme practical obstacles to their organisations; moral objections are either unwarranted or can be removed by minor measures. Everything, therefore, is left to rest on their contribution to planning. Many registers have made a major contribution to planning;
equally some have been peripheral and ignored. These unsuccessful registers have mostly not had ill-effects. So the trend for setting up registers may as a whole be considered worthwhile because of the actual inpact on planning of some already in existence and the potential impact of others in the future.