In 2001, we were funded by the NHS Executive North West R & D Directorate to undertake a study into the social implications of the increases in wheelchair use in the north west of England. Between 1986 and 1995 there appeared to be approximately a 100% increase in the numbers of wheelchair users in England and Wales. Little was understood about why the increase had taken place, or what the social implications were. The objectives of this study were: 1. To clarify the trends in wheelchair use and establish if the perceived increase since 1986 is continuing. 2. To establish the relative importance of different explanations for this increase. 3. To ascertain if the personal care, housing and other social needs of wheelchair users have changed during this period of increase. 4. To determine the resource implications of changing needs for service providers and purchasers. 5. To highlight aspects of service provision which are problematic for wheelchair users or other service providers. 6. To develop the research capability of NHS staff within disablement services. The objectives of this study were originally to:
1. To clarify the trends in wheelchair use and establish if the perceived increase since 1986 is continuing.
2. To establish the relative importance of different explanations for this increase.
3. To ascertain if the personal care, housing and other social needs of wheelchair users have changed during this period of increase.
4. To determine the resource implications of changing needs for service providers and purchasers.
5. To highlight aspects of service provision which are problematic for wheelchair users or other service providers.
6. To develop the research capability of NHS staff within disablement services.
Capability Building
Taking the last one first, there were two aspects of capability building with which this project engaged: within the Preston DSC; with the research assistant to the project. Several Preston DSC staff took part in the project through providing and explaining patient data base information, supporting the researchers through our advisory panel, and attendance of research awareness courses. We recruited a research assistant from within the NHS who is a physiotherapist. It is with the research assistant that more systematic capability building has, and is, being undertaken. The research assistant undertook the qualitative interviews and is currently studying for an MPhil at Lancaster University with the supervisory support of the researchers.
The data from the interviews which provided the topics for the construction of the questionnaire, also provided the fieldwork material for the research assistant's MPhil. An early finding from the interviews was that many wheelchair users were socially isolated despite having received considerable input from a range of rehabilitation therapists, in particular occupational therapy and physiotherapy. There appeared to be a gap between the expectations of rehabilitation therapists and the real lives of the interviewees. Whilst the former had high expectations that individuals would be dedicated to continuing therapy on their own, our interviewees found it impracticable to fit such activities into their every day lives. This gap appeared to be the result of therapists working strictly to an individual model of disability. The thesis of the MPhil. is about analysing the role of rehabilitation professionals with wheelchair users from a social model of disability perspective. That investigation remains part of the ongoing work of the funded project.
Trends in increases of wheelchair use
To establish periodicity of change we would need comparative snapshots of Preston DSC patient data at different points in time. As noted earlier, the integrity of and range of data in the Preston DSC data base would not permit us to analyse trends over any period of time. During any chosen period we would also have had to take into account the changing health areas - authorities to trusts - and the changes in contracts. At the time of writing this report, June 2004, there are 19,797 people on the Preston DSC wheelchair patient database which is nearly 4,000 less than in June 2001. However, with the loss of certain contracts this actually appears to suggests the population of wheelchair users is stable. This confirms the intuitive knowledge of those in the DSC who thought that the increases during the 1990s were in fact slowing down at the end of that decade.
Our survey has provided information about the age of wheelchair users and the length of time they have been using a wheelchair as well as information about the types of wheelchairs supplied and time since acquisition. Our data provides a bench mark against which future studies could examine longitudinal trends. The final stage of this study will involve redesigning our questionnaire in a simplified form that could be used for this purpose.
Explanations for increase
At the outset of this study we noted that there were several explanations for the increase in wheelchair use. First, it has been suggested that the rising numbers were linked to the increasing population of older people, but our examination of different DSC datasets shows no significant change in the distribution of wheelchair users by age between 1993 and 2001 (see Table 3). Certainly the older population of wheelchair users has been increasing, but so too have the numbers of younger wheelchair users. During this period the overall increase in the population of over 65 year olds in the UK was 202,000 (2.2%) while there was a decrease in those under 16 year olds of 51,000 (0.4%) (Social Trends 2004: Fig. 1.3). The overall population change between 1991 and 2002 was a net increase of 163,000 (Social Trends 2004: Fig. 1.7). Thus any change in wheelchair use that could be accounted for solely by the increase in the ageing population, should increase the average ages of wheelchair users, yet the two datasets show a slight decrease in both the mean and median. This may be accounted for by the different sizes of the data sets, but what is clear is that there is no significant increase in the average age of wheelchair users during a period when their total numbers did increase.
Second, it is suggested that changing attitudes towards disablement may contribute towards the increased numbers of people counting themselves as such. Certainly we found a level of assertiveness amongst both our interviewees and survey respondents which would support this hypothesis, but it is not possible to say if this accounts for the increase. The overwhelming majority of wheelchair users view wheelchairs as potentially liberating (see Chart 1) and despite criticisms of the lack of choice and certain design failings, respondents were generally positive about wheelchair use.
Third, the increase may be as a result of changing prescription and allocation procedures within the NHS. As our survey was of the wheelchair users rather than of NHS personnel, it was not possible to find out very much about this. We considered a question about who had 'prescribed' their first wheelchair and when, but this proved impossible to make reliable.
Fourth, changes in medical practice and health behaviours may have resulted in delayed mortality and hence a larger population was surviving to be disabled. Although some data was gathered about medical causes of people's impairment, the accuracy of this is far from that which would be required to make any firm claim to this cause. Our only evidence here is anecdotal from those involved in the provision of wheelchairs and that is clearly supportive of this explanation of the increase in relation to younger people, especially children.
Finally, the changing figures may have been methodological. As we have noted above in chapter 1, currently there are two competing figures for the number of wheelchair users, Aldersea's (1996) figure of 710,170 wheelchair users in England and the Audit Commission's (2000) figure of 640,000 for the UK. While these differ quite widely, they are both considerably larger than the 1986 OPCS figure of 360,000 and as we noted in the background to our study, local health trusts were themselves reporting increases of around 15% per year in the late 1990s. Artefact of measurement may well be an issue, but not to the extent of explaining the increase.
Our studies of the various explanations put forward for the increase in wheelchair users suggests therefore that the more probable causes lie in improving medical treatment, changing prescription practice and in changing attitudes of disabled people toward wheelchair use. The ageing of the population does not account for the change and while measurement reliability is an issue, it only affects the recorded volume of the increase, not the fact that there is one.
Changes in the social needs of wheelchair users
At the outset of this study, we had intended to undertake some form of estimation of need. What became apparent during the qualitative stage was that the nature of social need was of more relevance than its quantification. Taking action to accommodate that development was entirely in line with our proposed methodology whereby we conducted the in-depth interviews in order to be better informed about the type of questions we should put in the survey. Hence, our conclusions here relate more to the way in which people would wish to receive social support than the actual amounts and types of support they require. The latter is the task of caseworkers in the various health and social welfare fields to determine.
In our study, attitudes were investigated through a series of statements with which respondents were asked to state their strength of agreement or disagreement. The details have been discussed in the previous chapter and we will now draw out the main themes.
Theme 1: Models of disability.
The first theme which we have discussed extensively in chapters 1, 3 and 4 concerns the extent to which wheelchair users identify with particular models of disability. It is very clear from our survey that a majority of respondents identify both positive and negative aspects of social life that are consistent with the analysis provided by the social model of disability. We think there are four major implications that we might draw from this strength of identification with the social model. The first implication is that the social model is more than a tool for a minority of disabled people, activists and academics, rather it provides an analysis of disablement that is relevant to the lived experience of wheelchair users.
Second, for many health and welfare professionals the social model of disability has become synonymous with a simplistic and inaccurate analysis of the limitations disabled people face. Such opposition is often based on a partial understanding of the social circumstances of disabled people. On the one hand it is argued that the material basis of the social model excludes explanations involving impairment and on the other, that an appropriate regime of rehabilitation can overcome barriers. The first of those positions fails to appreciate the complexity and sophistication of the social model of disability, whilst the second fails to accord with the experience and aspirations of disabled people.
Thomas (forthcoming) makes the case that since the original discussions of the Union of Physically Impaired Against Segregation in the early 1960s, the reformulation of disability was based upon a social-relational approach, meaning that disability results from a relationship between people with impairments and the social world. This does not deny the effects of impairment, rather it reconstructs disability as a form of social oppression that is additional to the limitations arising from impairments.
Third, as Oliver argues (see Chapter 1), disabled people become the subjects of rehabilitation professionals who, in devaluing the status of non-walking, also devalue the lives of their patients. It is necessary for all professionals involved with wheelchair users to recognise that impairment and wellness can and do co-exist. If disabled people are treated as unwell, they are then expected to occupy a particular role as a patient, one that is usually associated with being cured, despite there being no cure on offer.
The last implication of the identification with the social model of disability concerns the extent to which our respondents believed that their disadvantages could be overcome with the help of anti-discrimination laws. The requirements of the Disability Discrimination Act, 1995 are currently affecting many areas of social life, including health and welfare services. The Department of Health and the Disability Rights Commission have recently drawn up a Framework For Partnership Action On Disability, which amongst other things recommends disability equality and disability awareness training for NHS staff. We recommend that a shared commitment to a rights-based approach would assist disabled people to lead independent and meaningful lives.
Theme 2: Emerging barriers.
Another theme we can draw from our study concerns emerging barriers to access. These barriers generate exclusions and have developed as a result of forces beyond the ordinary control of health and welfare professionals. The changes are part of late urban capitalism at its most mundane. When wheelchair users engage with the world of independent living they encounter new barriers to access: out-of-town shopping and the domination of the motor vehicle. Our respondents found out-of-town shopping centres to be inaccessible. This seems to be counter-intuitive as there is plenty of reserved parking, wide aisles for trolleys and lots of helpful assistants. This commercial retail world which is entirely orientated around car-access and walking long distances to find what you want when not in a car, appears to have produced an environment that is as inaccessible as the narrow doorways and steps of traditional local shops. Wheelchair users indicate that for most of them the town centre provides the easiest access to shops. Planners and retailers should take into consideration this finding when proposing re-development. We did not expect this finding, nor for it to be as clear and strong a message as we found, however we are unable to provide further explanations for this and recommend that additional investigations be undertaken.
The car itself is clearly a core issue for wheelchair users. On the one hand wheelchair users can use cars more easily than any other form of transport, including taxis, but on the other hand, cars have created barriers for wheelchair users when parked across paths, curbs, lay-bys and junctions. There appears to have been an increase in such obstructive parking. Motorists seem to think that it is more important to keep the carriage-way clear than it is to allow free passage for pedestrians. The mind-set which focuses on allowing other motorists to continue to travel at unimpeded speed fails to acknowledge the existence of pavement-users, often forcing them to use the very carriageway they have made more dangerous by their manner of parking.
It would appear to us that only the extension of anti-discriminatory legislation is likely to be effective in countering this cult of the car. If children, parents pushing prams, older people and wheelchair users are to be able to use pavements in the future action needs to be taken soon.
Theme 3: Consulting wheelchair users.
Interviewees expressed a clear preference for inclusion within the decision making process that led to the allocation of services for themselves. Their views were not receiving the attention which the experience of being a wheelchair user merited. As there is a fashion amongst health and welfare professionals and managers for empowering patients or service users and claiming to include them in each and every process to which they are party, one might suppose the expressed demand for inclusion from our interviewees was being meet, and that here we are just reporting the anachronism of those who were not consulted in the olden days. Far from it. To make such a conclusion would be to miss the point expressed throughout the responses to our attitudinal statements, that wheelchair users know what they want, may be prevented from accessing it at a point when it actually matters, and believe that regulatory force is needed in order to remedy discrimination and injustice. In other words, wheelchair users embrace a rights approach to independent living which operationalises the social model. If health and welfare professionals and their managers fail to heed these indications they will continue to be out-of-step with wheelchair users who are asserting a more inclusive approach to life as a disabled person, rather than simply conforming to the low expectations of a clinical model.
Theme 4: Extent of barriers to participation.
For many of the issues we investigated, there was a significant minority of respondents (usually between a fifth and a third) for whom there were important barriers. While many people said that issues such as other people's attitudes or the appearance of their wheelchair did not matter, in each case this significant minority of respondents were reporting their experience of oppression. Statistical interrogation of each of these minorities revealed that they were not necessarily the same people, but in each case they did appear to be the group that were most likely to be attempting to participate actively in those particular areas of life. For example, it was young adults who experienced most negatively the exclusion and oppression around lack of access to education, sports and leisure while it was older people living in institutions who were least able to experience liberation through their wheelchairs.
This raises an important question about the levels of expressed satisfaction in many of the areas under investigation. If those who are clearly dissatisfied are also those we would most expect to be actively participating, then could the levels of satisfaction be due to a high degree of social withdrawal? At the outset of this study we had wondered whether the increased numbers of wheelchair users had reached a point where there was a 'critical mass' that might be affecting the attitudes of non-disabled people and the organisation of social life. The oppressed minority we identified tends to suggest to us that a significant number of people are pushing the boundaries of accepted behaviour, in other words people are moving out of the 'sick roles' that have been assigned to them.
Implications for providers and purchasers
We have explored a number of areas such as education, housing and leisure which provide some information for a range of non-NHS service providers, both in the private and public sectors. As we reported in the previous chapter, there were significant numbers of people whose education was disrupted due to disablement and there were staggeringly few wheelchair users of working age who were actually in employment. If we only consider those people who declared themselves employed or unemployed, that is to discount those who are retired or stated the question of employment status was not applicable, then only 28% of those declaring themselves as economically active were in employment. This contrasts with 49% of all disabled people and is comparable only with the employment rates of people with learning difficulties (29%) and those with mental health problems (21%) (Office for National Statistics [neighbourhood.statistics. gov.uk]). Employment is not just a means to a greater income, but provides many people with important social contacts. Unemployment is a major contributing factor to social withdrawal.
The lesson of this study for many providers is to take note of the significant minority of people who experience oppression as a result of their exclusion, but to also recognise that as barriers are removed, enabling more people to participate in their chosen activities, so it is likely that the aspirations of others will increase. We have noted in the example of out-of-town shopping centres that solutions are not necessarily as simple as providing an environment that conforms to certain notional criteria, but involves having a more in-depth understanding of the relationship between people with impairments and those places. One of the contributing factors and something we covered in more depth, is the provision of wheelchairs themselves.
Certain factors stand out about the way people view their wheelchairs and the Preston DSC as the major provider in the north-west. As we have noted above, people feel safest with electric self-controlled wheelchairs and although a large majority of our respondents report being satisfied with the support and service they receive from the staff at the DSC, we know from issues raised with us by local disability information and advice centres and from our interviewees that the waiting time for outdoor electric wheelchairs is far too long. This is a funding issue and is one of two things that could be considerably improved by increasing the budgets available for wheelchair provision. The other is to increase the range of wheelchairs available so that people have more choice, something that is currently only available to those wheelchair users at the top of the hierarchy discussed earlier.
The picture we obtain from this survey therefore is of a service that has a skilled, competent and willing workforce, but who are limited in what they can actually do by the policy of purchasing standard issue equipment. This is not a new problem, rather it is a service approach that has developed since the immediate post-war period when the Ministry Model 8 was produced, 'a wheelchair designed for the service, rather than the wheelchair user' (Woods and Watson 2002a). Vic Finkelstein, a founder of the disability movement, has argued that in the UK we have two competing policies between wheelchair users. On the one hand there is a group for whom we build suitable highways, resting places with accessible toilets and refreshments and offer an increasing array of sophisticated and comfortable wheelchairs. These are of course car drivers. On the other hand, we expect disabled people to use vehicles that can often only be controlled or propelled by another person, that are of identical design, and that they should have to negotiate raised kerbs, street furniture and speeding traffic. Whilst many of these issues are beyond the control of the NHS, the range, suitability and availability of wheelchairs is their responsibility.
Inter-relations between different services
Joined-up services for joined-up problems has become a clichi of the new Labour regime, however it has a resonance for wheelchair users because no one service provider actually meets their needs. The basic problem with the joined-up thinking approach is whether the objective about which professionals are jointly thinking actually corresponds to people's understanding of how they want to live. Wheelchair users know a lot about the different services they receive and they are proportionately appreciative and understanding of organisational and resource difficulties.
One of the ways forward for ensuring that joined-up services are effective is to give the service user more control over their provision. This has been developed to some extent with direct payments in the social care field and of course with the use of the voucher scheme for wheelchairs. However, if wheelchair services are ever to become as effective as opticians in combining choice with prescription, then some further resources are required.
