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2 Findings and Emerging Themes

2.1 The views and experiences of service users

2.1.1 In order to gain a full range of views and experiences, we used several means of gathering information from service users during the project. These were:

• feedback and follow-up from the regional meetings with service users organised by SEHD and the wheelchair service centres during the summer of 2005 - three meetings were held in each of Scotland's five wheelchair centre areas
• discussions at a national conference for service users, carers and service staff held on 12 September 2005
• widespread distribution and analysis of responses to a questionnaire designed with input from service users, and
• one-to-one interviews with individual service users and carers, and representative organisations.

2.1.2 Many people we talked to were positive about aspects of the wheelchair service. However, the most striking aspect of all these events, investigations and conversations is the degree of agreement among service users about the main challenges facing the wheelchair service in Scotland. These are:

• waiting times are often too long for assessment, provision of equipment and repairs
• the assessment process takes too limited a view of mobility, is rarely perceived to be holistic and appears to be too heavily orientated to what equipment is available rather than what is required
• equipment provision is perceived as being of basic quality and limited choice; the eligibility criteria governing equipment provision, particularly for powered chairs, are deeply resented
• follow-up and maintenance is lacking in many areas, with little routine follow-up or maintenance of equipment, and limited ongoing assessment
• out-of-hours cover for repairs is not generally available, causing concern, inconvenience and distress for users
• centralised service centre locations can necessitate journeys of several hours for people who have severe mobility problems, and
• information and communication can be lacking, or not proactive.

Waiting times

2.1.3 Many service users told us that the waiting times from referral through assessment to provision of equipment and thereafter for equipment repairs were all excessive. Waiting to be assessed after referral to the service was reported to be anything from two weeks to over two years, with the longest delays apparently for powered chair assessment or for seating. Repairs may take anything from a few days to over six weeks and some wheelchair users did not have a replacement chair in the meantime.

2.1.4 Service users described the effects of long waits on them as including:

• having to sit in unsuitable and uncomfortable positions or equipment
• having to borrow a chair (from the Red Cross for example) while waiting for a repair; some bought a replacement chair privately
• being house-bound or even bed-bound, and
• suffering a worsening of their condition or postural difficulties.

2.1.5 Many users asked why wheelchairs were not included in the waiting time guarantees common for other parts of the health service.

Assessment for a wheelchair

2.1.6 The following themes emerged from service users in relation to the assessment process:

• assessment is not holistic - many service users perceived that the assessment process for getting a wheelchair did not take into account everything that might impinge upon the kind of chair they might require for a full life. They often felt that they were not listened to and that only needs that could be met by the NHS were assessed and taken into account. Users wanted the assessment to take account of:
  - medical condition and needs around posture and seating, including neck/back support and extension
  - lifestyle, employment and leisure needs and carers abilities
  - accommodation and car type
  - likely future needs
• assessment is not flexible - service users believed that the process should be able to accommodate the involvement of the people who know the user, their needs and abilities best; for example, carers, family and community therapists
• eligibility criteria for equipment - these were seen as being finance-driven, unfair and determined by medical need as opposed to wider social needs. The criteria for powered chairs in particular are reported as unfair and unrealistic. Perhaps the commonest complaints about rigid assessment were in relation to powered chairs
• lack of joined up or co-ordinated provision - NHS wheelchair services do not provide all mobility equipment, and situations may arise where issue of a wheelchair is contingent on securing services and equipment from other agencies. For example, the scenario where a wheelchair cannot be issued until a ramp has been installed at the users home, but social services will not fit a ramp until a wheelchair has been issued was highlighted.

Provision of equipment

2.1.7 Service users' main comments on equipment were about:

• a lack of choice around basic chairs and other equipment
• basic quality of equipment
• poor fit - chairs were too big, too small, not comfortable
• chairs not enhancing mobility and independence as much as they could, and
• the unsatisfactory appearance of the chair.

Follow-up and maintenance

2.1.8 Service users commented that there was limited routine follow-up of wheelchair and seating users and that this was particularly important for children and adults with changing needs. Stories were recounted of the difficulties and physical hardship people faced when their needs changed more quickly than the service could respond to; users were of the opinion that regular follow-up should identify problems and changing needs before they begin to impact upon the usefulness of equipment and the wellbeing of the user.

2.1.9 There is no comprehensive, standardised, system-wide planned preventive maintenance ( PPM) programme for equipment. PPM could offer good value for money and improve the service for users and carers. In some areas, users can get a refund for basic repairs to their chairs carried out at a local garage or bike shop - e.g. punctures and brake adjustments, but many wanted access to a more regular and specialist maintenance system to avoid problems arising in the first place, to advise or to check the set-up of their chair.

Out-of-hours cover

2.1.10 The lack of a facility for contacting the wheelchair service or having repairs undertaken after 5.00pm, at weekends and on public holidays was a source of great dissatisfaction for wheelchair users. The impact of this gap in the service was illustrated by the stories of service users, particularly those who lived alone or were completely dependent on their chair for mobility, sometimes unable to get out of their house for several days while waiting for an emergency repair.

Service-centre location

2.1.11 Many service users commented on the protracted and complex journeys they - and their carers, relatives or friends - may have to make, usually for assessment, to wheelchair service centres. This can involve days off school or work for the user and their carer and is made worse by the ongoing travel difficulties that wheelchair users' experience with public transport. For example, wheelchair users in Stranraer face a round trip of 170 miles and five hours to get to their nearest centre in Glasgow. The issue is a particular problem when repeated journeys are required and/or ambulance transport is necessary.

A further issue was the difficulty some users faced in accessing their centre of choice. Several service users told us that they preferred a wheelchair centre, for reasons of accessibility or quality of service, but had been denied access, since the NHS Board area they resided in had a contract with a particular centre, which they were constrained to use.

Information and communication

2.1.12 Service users complained of:

• a lack of information at every stage of the process from pre-assessment to post-equipment issue
• a lack of understanding and empathy about the impact of immobility on people's lives
• having to take the initiative, for example when chasing up equipment supply and repairs
• not having an easy access telephone number for the service and having to go through someone else, for example the community occupational therapist ( OT)
• not having telephone calls and letters responded to, and
• the person who answered the telephone not having sufficient knowledge and therefore not referring the user to an appropriate person.

Regional events

2.1.13 The table below shows an analysis of the main themes raised at regional events. It should be noted that the individuals attending these were a very small sample of total wheelchair users in Scotland, and self selected, in that they volunteered to attend these events. Nevertheless, some patterns appear to be apparent.

Table 1

('Y' = appears as theme in event notes; ' N' = did not appear as theme in event notes)

Service user questionnaire

2.1.14 As part of the needs assessment part of the project, we designed, in conjunction with service users, issued and analysed a questionnaire about the experience of wheelchair users. We issued some 1,500 questionnaires and made the document available on our website, and some individuals photocopied questionnaires and shared them. It was therefore quite disappointing that only 258 completed questionnaires were returned, despite this being an above normal response rate. Nevertheless, we do appear to have a good cross-section of replies: a broad age group responded, with particularly high number of responses from 46-65 year olds. 47% of respondents had accessed services at Glasgow, 22% of respondents at Dundee, 15% at Edinburgh, 9% at Inverness, 8% at Aberdeen.

2.1.15 These completed questionnaires contained useful additional information, which has informed this report throughout. The areas of response are listed below, together with some of the findings where these are clear cut. Full details are available in annex A.

• pattern of wheelchair use
• waiting time profiles for assessment and equipment
• the effects of waiting for assessment and provision
• borrowed chairs
• repair profiles including waiting times: 61% of respondents had their wheelchairs repaired within 2 weeks of reporting the fault and 19% within 3-6 weeks, 20% had to wait in excess of 6 weeks: 22% of the total were offered a replacement chair
• assessment issues
• satisfaction with equipment: 41% were dissatisfied for a variety of reasons, especially younger users, however 72% found their chairs easy to use
• availability of equipment: 25% reported that they had been refused equipment they wanted, most often a powered chair, but including 'wheelchair accessories', different chairs (with additional functionality) and less frequently 'lighter chairs'
• interaction with the wheelchair service
• waiting for appointments other than assessment and the effects of this, and
• suggestions for improvement: 68% believed that the service could improve, highlighting repairs, communication, staff, assessment, and choice.

A declaration of independence

2.1.16 At the national conference on 12 September 2005, service users in the audience agreed on wording for a statement they called a 'Declaration of Independence' which was presented to the Deputy Minister for Health and Community Care, Lewis Macdonald, when he addressed the conference in the afternoon. The statement was agreed as follows:

"The service should be a basic human right accessible through self referral and should ensure individuals are given all appropriate aids necessary to fulfil the basic right of all citizens to play an active part in society and their daily life regardless of physical limitations or differences."

2.2 Current service model

2.2.1 The findings in this report of the current service model across NHSScotland are based on:

• visits to all service centres
• interviews with managers and staff at service centres
• feedback from service users, carers and representative organisations
• analysis of data relating to finance and activity, and
• desk-based research on background, benchmarks and examples of good practice.

The organisation of services

2.2.2 The Scottish wheelchair service is provided from five regional centres in Edinburgh, Glasgow (known as WESTMARC), Dundee (known as TORT), Aberdeen (known as MARS), and Inverness (Highland). Together they receive 4,100 new referrals each year. The table below gives a breakdown of that figure by centre together with the number of registered users. There is significant variation between some of the centres in the number of registered users per head of population. There would not appear to be any reason why this should be the case, although we might perhaps expect a slightly higher density of wheelchair users in urban populations. It is likely that this variation is in large part because there is no standardised methodology for identifying 'active users' as distinct from 'registered users'.

Table 2

The above data was provided by the wheelchair centres

N.B. the figures for registered users are probably defined differently, with Inverness, Aberdeen and Dundee focusing more on 'active users': those who are likely to have ongoing contact with the service.

A comparable figure for Glasgow and Edinburgh, allowing a similar rate of users per head of population, might give a Glasgow figure nearer 40,000, and Edinburgh perhaps 20,000. Due to this inconsistency, we have generally compared data by head of population.

Patient pathway

2.2.3 Although there are considerable variations in the details of the way the service is provided across the five centres, the overall patient pathway is similar:

• a referral form is required for any type of wheelchair. Although general practitioners ( GPs) usually sign the referral form, they are not necessarily knowledgeable about wheelchair technology or eligibility criteria and the form is often completed by a district nurse or occupational therapist. Referrals can also come from hospital consultants. The referral form is sent to the wheelchair centre where it is screened: the referral rate per thousand of population served varies between roughly 2.4 (Aberdeen and Glasgow) and 3.2 (Dundee)
• the majority of referrals do not require the service user to be seen by the wheelchair centre team, and a wheelchair is ordered at this point, in most instances from the centre's workshop - these are typically standard manual propulsion chairs. Total attendances calculated as a ratio of the number of referrals varies between approximately 0.5 (Edinburgh) and 2.0 (Dundee)
• if an individual is likely to require something other than a standard manual chair, for example postural support, seating or complex adaptations, they will be seen for an assessment. All individuals likely to require a powered chair are assessed. Moulds may be taken for seating. A chair is prescribed according to assessment and the eligibility criteria, and is ordered, usually from the centre's workshop
• screening, assessment and prescription are generally managed in a team setting with bioengineers and occupational/physiotherapists sharing the workload and responsibility, sometimes with the involvement of a rehabilitation consultant. Appointments between the wheelchair user and the service may be at the centre, at school, at home, or at an outreach clinic, where centre staff will visit for a day and provide more local access, albeit with a more limited range of facilities. There are variations in the ratio of patients seen in a clinical setting compared to a residential setting, between around 2:1 (Aberdeen) to 1:3 (Glasgow)
• most chairs are purchased by the wheelchair centre, at prices negotiated on a bulk contract by the national NHS purchasing organisation. Some will need no modification and will be dispatched straight to the user, probably via the centre's workshop, which may keep a stock of standard chairs. More complex chairs may be ordered straight from the manufacturer in final form, but more commonly go via the centre workshop, where modifications may be made to a standard bulk-purchase chair. Adaptations may be modular in form, with a range of arm or footrests or seating being inserted. Due in part to this modular approach, many chairs are refurbished by the centre workshop for reuse
• some centres are able to offer 'one-stop' clinics, where the user is assessed and issued with the appropriate chair at the same appointment. However, some patients, particularly those needing complex chairs and seating systems, may need more than one visit, and
• once a chair has been dispatched, there may be a variety of arrangements for further help, assistance and follow-up.

Within this general pathway, variations between centre practices may be driven by a multiplicity of factors, which may include size, functionality, rurality, funding, staffing and history.

There are also differences in the way that repairs are dealt with: most centres have a mobile technician who can visit users to deal with problems, and has some discretion over dealing with urgent requests.

Complex repairs may need to be returned to the wheelchair centre, with resulting delays, and this is standard practice in some centres. PPM is not widely available, despite the reduction in repairs that this should yield.

There is no routine access to services or help out-of-hours.

Seating

2.2.4 Seating can be a very significant aid in providing comfort and postural support. For many users, a standard pressure relieving cushion may be all that is required. For some individuals, however, including children, a moulded seat is needed and this is fitted into the wheelchair frame. This may be to assist an individual who does not have full control of voluntary reflexes or to give a more beneficial seating position for those with postural difficulties or impaired motor skills. In such instances, the seating may need to be made to conform to a mould of the individual's body. This can take time, and certainly requires a system to ensure that the component parts of the wheelchair and seating system are properly and promptly married together and suitable for the individual user.

Good practice in Scotland

2.2.5 Throughout our visits and interactions with the wheelchair service centres, we encountered extremely dedicated and hardworking staff. This observation was confirmed by service users, who were keen to record their recognition of the effort and service provided by staff. We also noted a range of examples of good practice that should be highlighted. Some of these are widespread across the service, whilst others tend to be concentrated in certain geographical areas:

• team-based assessment model - screening and assessment shared between bioengineers and therapists, according to the needs of the patient and the particular skills of each individual. This is a very flexible model giving potential for an element of multi-skilling. While there are individual users whose needs are best assessed by a particular profession, the team-based model appears to enable better management of workload and flexibility around peaks and troughs of activity and recruitment difficulties.
• training services - training users in effective operation of their equipment enables them to make the best use of it and ensures that they are confident and safe. In Dundee, powered chair users receive driver training.
• minor repairs - there is widespread use of a low cost reimbursement scheme, for users to claim back the cost of minor repairs up to perhaps £20. This enables repairs such as punctures and brake adjustments to be carried out quickly at a local bicycle repair shop or garage.
• Dundee has received temporary funding to allow a redesign of paediatric services giving more frequent clinics, service closer to patients and greater stock levels, producing an audited improvement in parent satisfaction from 82% to 94%.
• Edinburgh has recently implemented a 'Transition Policy', providing the option of an extended transition period for young people with complex physical needs when they move from the paediatric service to the adult service. This also includes excellent communication and the option of a joint meeting with therapists from adult and paediatric services.
• PPM - following a successful pilot, Inverness has now rolled out PPM to all users, providing a 'man in a van' who goes to users to check the set-up and maintenance of their wheelchairs. This has been very well received, will reduce equipment failure, the need for repairs, and allow adjustments and advice to be given.
• international conferences are hosted in Dundee, giving the service a much needed higher profile as well as information exchange on good practice.
• children's services - the rate of growth in children and the impact of equipment on their cognitive and physical development means that children's services tend to require a more intensive approach. Some centres are set up to respond rapidly, proactively and holistically: Edinburgh is supported by the mobility charity Fastrax who will fund additional 'lifestyle' equipment where the NHS currently does not. In Dundee and Inverness, clinics and/or servicing/repairs are carried out in schools, enabling minor adjustments and repairs to be made quickly and as required without interfering with children's education.
• patients' follow-up - some centres routinely send out an annual follow-up letter to service users who have not been in contact with the service during the past year. This is a useful way of keeping in touch with low demand users and also alerts them to changes of address etc.
• Edinburgh provides training for referring community therapists for uncomplicated wheelchair prescriptions, which is updated annually for new staff and as a refresher for current prescribers.
• workforce development - a number of centres are investing in on-the-job training and development for therapists and bioengineers, to enable them to achieve their state registration or take part in rotations through other parts of the NHS while being productive members of the team.
• Edinburgh offers adult wheelchair users the option of attending the centre to view and try a range of chairs.
• advice on private purchase - in Dundee the charitably funded Outreach Project provides independent advice on private purchase and, importantly, professional assessment for users who are not eligible for powered chairs via the NHS. Edinburgh children's services support parents and children in the selection of private purchase chairs and buggies and will organise assessments with companies and be in attendance if the family chooses. Many users who have purchased chairs privately state that they would welcome such advice and assessment prior to making the purchase.
• we also note the work pioneered by the Scottish Service Wheelchair Group ( SSWG) and the Scottish Rehabilitation Technology Service Providers Forum ( SCOTReT) to improve equity and value, develop standards and databases. Efforts have also been made to develop target benchmark specifications, laying down standards for several aspects of service provision.

Funding

2.2.6 In 1996/7 the funding for the wheelchair, seating and artificial limb and appliance service was devolved to NHS Boards. This was not 'ring fenced' and formed part of the overall annual allocation. The table below shows, to the best of our knowledge, the current budgets for wheelchair services, compared with the original allocation uplifted for inflation.

It is important to note that, although there appear to be discrepancies between these figures, they may, at least in part, be due to difficulties in identifying funding flows, for example, between wheelchair and other rehabilitation services. Nevertheless, it would appear that the level of expenditure devolved to NHS Boards for expenditure on wheelchairs and seating has, in some cases, not kept pace with inflation and other uplifts, or has even been reduced.

Table 3

*Scottish Executive allocation estimated using 1996-97 Artificial Limb and Appliance allocation as a basis

2.2.7 The current expenditure breaks down to an average annual spend per head of population as outlined in the following table. The allocation per user should be viewed with caution, as different methodology may be used to identify 'active users' and 'registered users'.

Table 4

Even allowing for several inaccuracies in the figures, the difference between the highest allocation per capita in Highland and the lowest in Edinburgh is dramatic and, although rurality and other issues may be contributing factors, it appears likely that there is an inequity in funding provided.

2.2.8 Spending by the wheelchair centres is broken down as follows. Please note that some assumptions have been made in compiling these data.

Table 5

Summary of NHS Board spend by centre
2003-2004 Allocation (Based on ReTIS Report)

Again, we should allow for some differences in cost attribution. Even so, there appears to be marked variation in the spend on staffing, equipment and in charging of overheads to the wheelchair budget.

Staffing

2.2.9 We would again like to emphasise the real commitment and concern shown by so many staff in the service, whether office staff, technicians or therapists. Many told us how distressed and demoralised they were by long waiting times, and what they saw as services severely limited by a lack of funds, hampering them in offering the service that users need.

2.2.10 There are considerable variations in staffing arrangements between the five centres, as the charts below show.

Table 6

Although there may well be economies of scale in staff numbers at Glasgow and Edinburgh, it seems unlikely that this is sufficient to account for the differences between ratios seen above.

2.2.11 There are also striking differences in the mix of staff across the five centres.

Figure 2

Staffing ( WTE) per 1,000 population

Again, this variation is unlikely to be entirely related to direct patient need - some centres recognised that their staff mix was due to historical patterns or ability to recruit. Others reported that they had a particular assessment/provision model that they wanted to follow.

2.2.12 Many service centres reported constraints to recruitment and retention, in some cases to such a degree that staff shortages were clearly affecting waiting lists for assessment. Staff from professions such as bioengineering and occupational therapy may not be keen to come into what is seen as a 'cinderella' service. Several centres operated a rotational model for therapists through other disciplines within an acute hospital: there was no apparent short specific training course for such practitioners. For bioengineers there are reportedly limited places on specialist courses and considerable problems with the time taken to become state registered and therefore an autonomous practitioner. Continuing professional development opportunities are largely ad hoc, with formal training opportunities thin on the ground. There is no planned programme of post-qualification training in Scotland unlike the provision for orthotists and prosthetists. There is seen to be little opportunity for career progression in the wheelchair service, also affecting recruitment.

Types of chair issued

2.2.13 The table below illustrates the differences in provision of manual and powered chairs between centres, figures are per annum.

Table 7

Again, although there are some specialist referral patterns, for example to the Edinburgh children's service, there is no clear explanation for these variations in terms of user need.

Waiting times

2.2.14 Despite the efforts of the service to collaborate through projects such as ReTIS, there is currently no standardised definition of 'waiting time' and the existing IT infrastructure does not support easy and accurate reporting of waiting times or waiting lists. Centres may interpret the various phases of waiting differently, and may well have several queues for different services or pieces of equipment - there are plans to address this in the near future. There is no nationally agreed target for waiting times within the wheelchair service that is applied and monitored consistently and independently.

2.2.15 Despite a lack of comparable data, it is clear that there can be some very long waiting times in some parts of some services. This could be due to a variety of factors, including:

• problems recruiting and staffing
• staff sickness
• rationing due to shortage of funds
• logistical problems with workflow, and
• lack of integrated facilities.

2.2.16 Some centres have commendable waiting times, reporting only a 3-4 week average wait for both adults and children from referral to provision of a chair. However, as might be expected, the wait for seating and powered chairs was often longer, with the shortest average waits generally varying around 12-22 weeks. Some centres had 'outliers' waiting considerably longer than this, with 48 and 59 weeks being reported, typically for specialised powered chairs with seating systems, potentially for particularly dependent individuals who could be very reliant on a chair for mobility. During our visits we were advised that the backlog in the workshops in some centres had, at times, been a year from assessment to the provision of more complex, customised equipment.

By comparison, recent additional funding has allowed some centres to support initiatives that have effectively provided immediate delivery for individuals on some waiting lists.

Size of centre

2.2.17 There are obvious variations in the size of the population served by each centre with WESTMARC in Glasgow serving half the Scottish population, making it probably the largest wheelchair centre in the UK. Differences in size of population served are a common feature within NHSScotland across many clinical specialties and even if WESTMARC only served the population of Glasgow, it would still be Scotland's, and one of the UK's, biggest centres. The chart below graphically demonstrates the size of WESTMARC, and also the number of assessments carried out in a clinical setting or at home.

Figure 3

Patient Attendances

2.2.18 The current wide variation in the size of population served by each centre reported above arguably has both advantages and disadvantages. Those highlighted to us include:

• economies of scale, in staffing and facilities.
• recruitment difficulties may be exacerbated in smaller centres.
• data and data systems requirements may be more complex in a bigger centre with potential hindrance to planning and performance management.
• a wider geographical area to cover can mean a slower response to repairs and delivery of chairs.
• greater user dissatisfaction at the journey time and complexity involved for larger centres such as Glasgow, particularly when people are used to having most health services available within their own locale; although journey times in Highland for example can be as great and greater than journey times from outlying areas to the Glasgow centre, users from Highland did not voice the same level of complaint about this, presumably because they accept that living in a rural area means travel complexity for many things.
• greater user dissatisfaction as a result of the perceived 'emotional distance' from some larger centres.
• the biggest centre, WESTMARC in Glasgow, attracted noticeably more adverse comments from users. There is a tendency on the part of users to suggest that this must be due to its larger size. An encouraging degree of emphasis on improving service delivery has been noted at WESTMARC over recent years and continues.
• many observers suggested that there is no 'right' size for a centre, but that a balance between accessibility, cost and geography is important.
• it is also important to note the discrepancies in staff:user ratios, staff:patient attendance ratios, and staff:spend issues, which may explain some performance issues and variation across the service.

Functionality and infrastructure

2.2.19 There are variations in the layout of centres and the grouping of component services. There do seem to be some clear ground rules that would allow a good service to wheelchair users and a cost efficient service where staff may be scarce and these would include:

• ensuring disabled access, including toilets - amazingly, this is not always available
• having sufficient clinic space available for assessments
• having a workshop adjacent to the clinic to allow running modifications and assist a 'one-stop-shop' approach, and
• having a wheelchair store on site, or very close by to allow assessments to include a trial of a range of chairs.

Lack of such facilities does cause delays in the service to users, and can make it more difficult to deliver the most appropriate equipment. In Inverness, for example, the service is hampered by lack of clinic facilities with main workshop facilities half a mile away. This makes it difficult to run sufficient clinics, have a selection of equipment available for users to view and try out, as is offered in some centres, and for quick modifications to be made whilst an individual is present at the clinic.

We also heard that outreach clinics could provide a wider range of services if they had more equipment, whether this was lifting hoists or more specialist assessment facilities.

Customisation/refurbishment/modularisation

2.2.20 Many wheelchairs provided by NHSScotland are refurbished: that is they are recycled and adapted for the next user. In order to deliver this, centres generally have their own workshops staffed by the NHS, and a system of modularisation, where a standard chair is adapted by inserting a longer footplate, armrest, etc.

This then generates a cycle where standard chairs are purchased, adapted with modular parts, returned, and refurbished. We are advised that this provides a cost effective model and, intuitively, it seems to make good sense, although examples of instances where it is cheaper to replace than repair goods are commonplace - computer keyboards, DVD players and the like.

The chart below gives an indication of the number of refurbishments carried out across NHSScotland. Again, there are variations between centres in the extent of refurbishment, with Dundee in particular at noticeably lower levels.

Figure 4

Number of wheelchair refurbishments 2003-04

There are, however, alternatives. Lomax, the only remaining Scottish manufacturer, is offering a modularisation system that is designed for quick delivery using an interactive design and build database. It has been pointed out to us that such chairs would come with a warranty that is invalidated if the chair is adapted by the NHS. The NHS does currently purchase through such routes, but in comparatively low numbers.

Private purchase

2.2.21 Across the UK, an uncertain but significant number of service users will buy their own chairs; either because they are dissatisfied with the service provided by the NHS, or because they want a specialist chair that is not funded by the service. With some notable exceptions, NHSScotland does not routinely provide information for private users, nor help assess individuals for a privately purchased chair, so that the individual user is very dependent on the dealer's recommendation. NHSScotland does not repair privately purchased equipment (except in very occasional, exceptional circumstances) in part because of the diversity of makes and models that they might be required to deal with.

2.2.22 The service does not have a recognised system to allow individuals to 'top-up' the funds available through the NHS and get a more expensive chair by paying the difference, although some centres will facilitate this on an ad hoc basis. There is no voucher system comparable to that in England, where the NHS will contribute a fixed sum of money if a wheelchair user wishes to purchase their choice of chair privately. As many in Scotland pointed out to us, both systems are dependent on ability to pay or access funds elsewhere.

Research/evaluation and fit for purpose

2.2.23 There is very little research, audit or evaluation being undertaken in the wheelchair service despite staff enthusiasm. What there is seems to be carried out by interested staff in their own time, without specific research monies. The following areas have been identified as worthy of investigation:

• longitudinal outcome measurement and tracking
• small scale piloting and assessment of new equipment prior to procurement
• post-issue equipment evaluation, and
• sharing of results across the service to ensure knowledge transfer and consistency.

Evaluation of chairs as fit for purpose is seen as important in purchasing the correct equipment. Allied to this are considerations about quality, 'maintenance free' chairs and costs spread over the life of a chair. Research into such issues could save the NHS money and provide service users with the most appropriate equipment.

Information systems

2.2.24 One of the key developments that we have observed in the wheelchair centres - and that has supported the preparation of this report - is the IT system developed by ReTIS. This is currently being rolled out to all the centres giving greater consistency in data capture and analysis, allowing benchmarking and information-based service development in the future. This IT system also enables allocation of workload to the most appropriate clinical and technical staff, and tracking of work packages through what may be a complex equipment provision. The system has potential for further development, specifically to enable more meaningful measurement and management of waiting lists and to provide the kind of information that would support the further development, implementation and monitoring of service standards.

One note of caution: we noted that the development and rollout of the ReTISIT system is heavily dependent on one software developer. His in-depth knowledge of the wheelchair service and ability to respond to the needs of the centres is excellent; however, we wish to highlight the risk inherent in having so much knowledge and capability vested in one person.

Any further investment in IT systems should take account of developments in the national health systems, including the electronic patient record, which should allow information about individuals to be accessed by appropriately authorised NHS staff regardless of location. Specialist advice would clearly be required: for example, we are advised that a web-based front end would allow ready access in a user-friendly format.

In making a decision about future investment in IT systems, it should be noted that, as well as the current in-house programme, there are a variety of alternatives already running in England and Scotland.

2.3 Emerging trends in technology, medicine and demographics

2.3.1 Our observations on emerging trends for the future are based on:

• desk-based research into development in wheelchair science, manufacturing and services worldwide
• interviews with representatives of wheelchair services across Europe, the United States, Australia and New Zealand
• interviews with wheelchair manufacturers in the UK and Europe, and
• interviews with individual specialist clinicians and other expert individuals in the field of disability.

Developing technology

2.3.2 There are some dramatic developments in wheelchair technology, particularly at the powered chair end of the market; these include:

• the iBOT mobility system that can climb stairs, balance on two wheels, climb kerbs, traverse grass, gravel, sand, mud, puddles and all types of uneven ground. iBOTs also have detachable control sticks that can allow the user to guide the chair into a vehicle.
• power-assistance for manual chairs, which gives the option to manually propel a chair, but offers powered assistance that can be adjusted dependent on the user's push strength. This type of wheelchair is seen as being somewhere between a manual chair and a fully powered chair.
• standing chairs allowing users to operate at the eye level of able-bodied people and assisting independence indoors and out, without some of the usual adaptations to the built environment.
• chairs with tilt-in space, recline and lift capabilities are all designed to act as pressure relieving and postural support aids.
• 'smart' wheelchairs are essentially robot wheelchairs that allow those with impaired physical, perceptual or cognitive abilities to use a powered chair programmed to meet individual needs. Some chairs now coming onto the market can be controlled by facial expression and eye movement. 'Smart' chairs can also be used to teach children how to operate a powered chair with the programme adjusted to the child's developing abilities.
• lightweight manual wheelchairs that are more transportable and energy efficient.
• modular chairs and seating and positioning systems can give better shock and vibration dampening, respond to and reduce spasticity and give improved comfort.
• aesthetics are important to many wheelchair users and recent developments allow for bespoke design features to be incorporated into an individual's chair, including a wide range of colours.
• some manufacturers have commented on the drive to reduce the cost of wheelchairs for NHS provision, with, in their view, little regard for durability and reliability, maintenance costs or manufacturing standards. Any drive to reduce unit costs may also limit research and development.

Medical advances and demographics - projections for the future

2.3.3 Some advances in medical care and treatment, and changes in the health and life expectancy of the population are likely to impact on wheelchair users and services. These include:

• advances in neonatal care have meant declining neonatal mortality, but some very low birth weight babies have a developmental disability of some kind which may include mobility difficulty.
• advances in trauma medicine are seeing more people surviving road traffic accidents for example, albeit with long-term disability.
• improvements in the care of individuals with spinal cord injury mean that their life expectancy is now approaching that of the general population.
• maintaining the general health of people with progressive illnesses such as multiple sclerosis and motor neurone disease means that individuals with these conditions and disabilities are living longer. There are around 10,000 people in Scotland living with multiple sclerosis and as their life expectancy rises, so will the pressure on the wheelchair service to provide increasingly complex technology to optimise their independence.
• the trend towards care in the community, where possible in people's own homes, will lead to more demand for increasingly complex wheelchairs.
• Scotland has an ageing population, a trend likely to continue and increase. This means more people will be living with the after-effects of stroke for example, while the growing number of people who live alone in old age without support from extended families drives greater demand for wheelchairs of all types. Older people usually have older partners who may have their own problems with mobility and illness or long-term conditions who cannot for example, propel a manual chair.
• the UK is also an increasingly obese population; obesity can bring its own mobility problems, particularly as people get older, but it can also exacerbate other medical conditions such as arthritis or make diabetes more likely.
• although research into spinal cord repair is progressing rapidly, there does not seem to be a realistic prospect of this affecting those with spinal injuries in the near future, and would anyway affect a very small proportion of current wheelchair users. The effects of improvements in immediate post-trauma treatment to reduce swelling appear uncertain.

2.3.4 In summary, we can expect the demand for wheelchairs to rise over future years. It is not possible to provide an exact assessment of this effect, but our research suggests that:

• the rise in numbers of individuals requiring mobility aids will be most closely correlated with an ageing population, and
• the pattern of need for more complex wheelchairs is unlikely to change dramatically from current ratios.

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