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Frontline Consultants' Independent Report " NHS Review of Wheelchair and Seating Services in Scotland. Report for NHS Quality Improvement Scotland"
1 introduction
1.1. Background to this review
1.1.1 Scotland has had a national wheelchair service since the Second World War, when it was felt that an organised Government approach to, and provision for, the levels of disability following the war were required. From that time until 1996, the service was organised centrally. In 1996, responsibility for wheelchair services was transferred to NHS Boards, some of which came together in consortia to buy and/or provide services. In 2005 the wheelchair service had a budget of approximately £14.2m per annum, employed some 100 staff and provided services to approximately 96,000 registered wheelchair users.
1.1.2 There is a wide range of people who use wheelchairs: some may be entirely dependent on a wheelchair for their mobility and housebound without it, others use their chair once a week for a family outing. Some people will be lifelong wheelchair users as a result of a disability they were born with, others will suffer a traumatic injury as an adult, other groups have a progressive disease which attacks them in their 30s and increasingly affects their mobility. Everyone involved in this project will carry keen memories of particular individuals whom they met: very young children zipping around in small chairs, clearly enjoying their ability to explore, and young men who communicate through a keyboard and an electronic communication system yet who can crack a joke and are involved in local politics. For very many of these people, the Scottish wheelchair service has a direct and significant effect on their quality of life.
1.1.3 Following a submission to the Petitions Committee of the Scottish Parliament regarding the service, supported by concerned users, carers and NHS wheelchair service staff, the Minister for Health and Community Care announced that a full and independent review of wheelchair services in NHSScotland would be commissioned and funded. Responsibility for commissioning and oversight of the project was devolved to NHS Quality Improvement Scotland ( NHSQIS). A steering group of service providers, service users, and clinical and technical experts was formed who together devised a project specification. The specification went out to tender with interested parties being invited to submit a bid to carry out the work.
1.1.4 Following this, in May 2005, Frontline Consultants were commissioned by NHSQIS to conduct a review of NHS wheelchair and seating in Scotland, to examine user needs and current service provision and to provide recommendations for the future development of the service to meet future need and demand.
1.1.5 This document is not intended to provide detailed solutions to all the current issues facing wheelchair provision in Scotland: rather it identifies the main issues, outlines the debate and suggests options and models which could move the service forward. Some changes may be implemented very quickly and may be cost neutral; others will need further work and additional funding before they can be put into practice.
1.1.6 We would like to thank the many members of the public and the NHS who have given their time to inform this project.
1.2 Approach
Objectives
1.2.1 This review took place between May 2005 and March 2006. The project was managed by a steering group, who monitored progress.
1.2.2 The broad aims of the review were to:
- identify, as far as possible, the people in Scotland who need wheelchair mobility and associated postural and seating support
- identify potential benefits for patients and their carers (presently excluded) which may be realised by the full range of potentially available interventions to meet those needs
- identify current service provision, and
- undertake a gap analysis to highlight what is required to move from the existing service to one which more closely meets the needs and aspirations of users and carers and which is affordable for NHSScotland.
1.2.3 It has subsequently been agreed that the steering group will have responsibility for drawing up specific recommendations to Ministers, while this final report, which remains independent, will indicate our assessment of the service, its future challenges and the most appropriate direction of travel along with the underlying logic for our conclusions.
Approach
1.2.4 Our overall approach was:
- understanding users' and carers' views and needs, including those of individuals who may have communication constraints
- exploring providers' perspectives, including clinical and training issues
- understanding future trends, in terms of user profile and technological advances
- looking at financial and service provision models, both current and future
- showing the balance between benefit to service users and costs, and
- assessing the overall efficiency of various provider approaches.
1.3 Method
The diagram below shows our method in schematic form.
Figure 1 Outline of key milestones and objectives
The project was carried out in 3 phases:
Stage 1: Information gathering and informal consultation
Users' views and needs assessment
1.3.1 We took part in a series of regional workshops to which wheelchair users and their carers were invited, to explain how the service worked for them and affected their lives. Fifteen meetings at five centres were held with users, carers and service providers to ensure that geographic differences in needs and models of provision could be represented. These events were organised by the Scottish Executive and the regional wheelchair service centres and facilitated by an independent company commissioned by the Scottish Executive Health Department ( SEHD).
1.3.2 A questionnaire was circulated to wheelchair users to give us further detailed information from a wider group.
1.3.3 We interviewed a wide variety of individuals and groups, with the aim of accessing a cross section of views.
The current service
1.3.4 Local consultation with service providers allowed us to identify examples of good practice in Scotland and understand factors influencing the quality, scope and effectiveness of the service. We visited each of the five wheelchair centres and talked to a very wide spectrum of staff about the service and their roles, and accessed as much information as was readily available about finance, service delivery and user numbers.
Future scoping
1.3.5 We interviewed a range of experts in the fields of rehabilitation, spinal cord injury, technology, research, leading edge practice and equipment manufacturers in order to obtain their views about future trends which might affect the wheelchair service in Scotland. We sought to identify key issues including:
- identification of strengths and weaknesses in current service and strategies for improvement
- identification of examples of excellent practice throughout the world
- benchmarking current NHS provision against wheelchair and seating technologies in use at centres of excellence worldwide, and
- future-scoping clinical and technological developments.
Desk-based research
1.3.6 We supported these interviews with an extensive web-based review, and information-gathering was undertaken to collect a broad perspective on wheelchair and seating services throughout the world. Abstracts from conferences such as the Posture and Mobility Group in UK, Rehabilitation Engineering and Assistive Technology Society of North America ( RESNA) and the International Seating Symposium in North America were reviewed.
Health gain
1.3.7 Working with a leading expert in the field, we commissioned work to examine the levels of 'health gain' which might be expected from improvements in the wheelchair service, how a 'cost benefit analysis' might view investment in the service, and how this might compare with the use of funds elsewhere in the NHS.
Key themes
1.3.8 The work outlined above allowed us to identify a number of key themes for further investigation. It was notable how consistently the same weaknesses in the service were identified by users, carers and service providers across Scotland.
Stage 2: Debate and consultation
National conference
1.3.9 The informal consultation process culminated in a national conference "Moving Forward: Re-inventing the Wheelchair Service" on 12 September 2005. This meeting provided a reality check on the information gathered and confirmed identification of key issues for the service. The information and views gathered were to establish the emphasis of the options to be included in the formal consultation questionnaire.
1.3.10 All staff associated directly or indirectly with wheelchair and seating services were invited to a meeting to highlight key issues related to the aims of the review. A synopsis of the interim report was presented and broadly supported.
1.3.11 This was followed by a presentation to the conference delegates of the key themes presented in the Interim Report. This, combined with a presentation outlining the Norwegian Assistive Technology Services, provided substantive issues to be tackled by break-out sessions, each led by a facilitator.
1.3.12 Five breakout sessions were held, each tackling key themes outlined in the Interim Report. Delegates were invited to complete an index card with a message, comment or question for the Minister. In the afternoon session the facilitators were asked to report back their comments and suggestions to the main group. Some key points emerged and were captured by a unanimously supported 'Declaration of Independence' (see next chapter). On the whole the delegates were satisfied that the key themes of the Interim Report covered the issues that needed resolution.
Formal consultation
1.3.13 Further work led to the production of a consultation document endorsed by the steering group and centred on the key themes endorsed by the national conference. These were:
- structuring the service, making it local
- making the service accountable
- assessment
- provision of equipment
- maintenance of equipment
- gap analysis of equipment provision
- staffing, and
- funding.
1.3.14 The main consultation document identified the key themes and gave some background to the issues. Respondents were asked to consider the key issues in the service and give their preferences amongst a set of alternative options. The questions asked were structured in order to stimulate debate and produce informed reactions.
1.3.15 The consultation paper was widely advertised, available at the wheelchair centres and could also be downloaded from the NHSQIS website.
Interim report
1.3.16 An interim report, a precursor to this document, approved by the steering group, was available to support consultation. It included a review of the current state of the wheelchair service in Scotland and provided further background relating to the key themes.
Steering group workshop
1.3.17 We also attended a two-day workshop for the expert steering group overseeing this project, to hear their informed discussion of a range of views and their initial formulation of specific recommendations.
Stage 3: Final report
Analysis of responses to formal consultation
1.3.18 2,500 'packs' were issued. There were 511 responses, considered to be an unusually high response rate: details are included in the annexes. While, generally, there was a positive view of the consultation exercise, there were comments from some respondents expressing concern that the options were in some cases ambiguous or unclear. Others felt that certain questions tended to 'lead'. In the time available it was not possible to pilot the consultation paper to remove potential biases and ambiguities. Many responses, both from individuals but even more particularly those from interested groups, gave a more detailed input about their views, ideas and rationale.
Report
1.3.19 We re-examined our thinking in the light of consultation feedback, resulting in this final report, where we have:
- outlined our conclusions
- corrected any errors identified in the draft report, implicit or explicit, and
- included outline costings for key developments.
1.4 Access to information
1.4.1 Wheelchair service centres have been very helpful in providing data, and performance information provided by the Rehabilitation Technology Information Service ( ReTIS) has also been useful. ReTIS is jointly funded by all Scottish NHS Boards to provide an information service in the field of rehabilitation technology. However, with no common information system across all service centres, it has not always been easy to compare like-with-like, nor to separate various components of cost or activity. Where it has been judged to be important for figures to be provided, these may well be estimates, extrapolated from available data. We would suggest that absolute accuracy is not essential at this stage - it is more important to give a 'best estimate' figure than none at all and this should be adequate for decision making at this level.
1.5 Needs analysis
1.5.1 A core approach to the method used for conducting the review was that of identifying the unmet needs of wheelchair users. A formal and full-scale needs assessment involves blending several considerations including epidemiology, economics and values, but in practice may be limited by time and by the resources and data available, and is not a one-off process. We would not claim to have conducted a definitive needs analysis for Scottish wheelchair users, but would suggest that we have, through the help of service users and providers, identified the key unmet needs, and checked our understanding through a consultation process. We have also quantified the key shortfalls, not to a high level of accuracy due to the lack of data, but sufficiently robustly to allow decisions to be made in the context of this review.
1.6 Clarification
1.6.1 Throughout this report, the term 'wheelchair users' should be assumed to include carers unless specifically stated otherwise. Likewise, the term 'wheelchair service' should be taken to include seating unless stated otherwise. A glossary of terms is included.
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