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annex c: NHSQIS report on public consultation

NHSQIS Report On Formal Consultation

Final analysis of responses to consultation paper received by 27 January 2006

Comments on the consultation paper were invited from 14 November 2005 until the consultation period closed on 27 January 2006. The consultation paper was distributed to over 150 professional, patient and charitable organisations including GP practices, the College of Occupational Therapists, Directors of Social Work, Scottish Society of Rehabilitation, Local Access Panels, Disability Resource Centres, Barnardo's and Sense Scotland. In addition, a version of the consultation response questionnaire was posted on the NHS Quality Improvement Scotland website. The website version contained the same list of questions as the paper version, but in addition asked respondents to give their name and contact details including their organisation if applicable.

The consultation paper invited comments in the form of a questionnaire with space for free text responses. The responses to this questionnaire are given below. For the questions relating to Sections 1, 2, 3.3, 3.4, 4, 5, 7.1, 7.2 and 8, respondents were asked to select one option from two or more possible alternatives. Some respondents did not choose any of the given alternatives and some chose more than one option and this has been shown in the tables below. However, these respondents have been omitted from the calculation of percentages of responses indicating support for a particular option.

Responses given below have been categorised as originating from an organisation/group; as from an individual or as of unknown origin. Where a respondent included information making it possible to determine if they were responding on behalf of a group, or as an individual, this was recorded as such. Where there was no indication on the response form or covering letter etc, the response was recorded as coming from an unknown source.

Section 1: Structuring the Service, Making it Local

In relation to the structure of the service, four possible alternatives were given in the consultation paper. Most of the respondents chose the option to increase the number of service centres with additional outreach clinics or a restructuring of the service across Scotland to meet user needs along the lines used in other countries. However, fewer respondents representing groups indicated the latter option to be preferable.

Section 2: Making the Service Accountable

With almost 60% of respondents selecting the first option, there was a clear preference to maintain a regionally managed service with nationally agreed standards and performance targets. This preference held across the three categorisations of respondents.

Section 3.3: Assessment of Simple and Complex Needs

There was a clear preference among respondents for NHS centres to assess complex cases only, with users with less complex needs assessed in the community and by community-based professionals, whether employed by the NHS or by local authorities. This option was supported by almost 75% of respondents and this preference held for each of the respondent categories.

Section 3.4: Follow-up and Reassessment

The overwhelming majority of respondents (91%) indicated a preference for the initial assessment process to include a date for the next planned assessment or contact for the wheelchair user and this should be based on that individual's own situation. The wheelchair service - or community-based staff - should take responsibility for ensuring that this happens.

Section 4: Provision of Equipment

The majority of respondents (54%) indicated a preference for the NHS to continue to provide all wheelchairs following assessment over provision of wheelchairs being devolved to a multiplicity of providers, including the NHS where appropriate.

Section 5: Maintenance of Equipment

There was an almost equal division of support for the wheelchair centres to continue to run the maintenance and repairs system with a programme of planned preventative maintenance and for the NHS to contract out all minor repairs to accredited local providers. Respondents representing groups were more likely to indicate a preference for the former alternative.

Section 6: Gap Analysis of Equipment Provision

Of the 460 respondents who answered the question, 423 agreed that the list covered the key gaps and 37 respondents did not agree these were the key gaps.

Respondents were given the opportunity to identify additional gaps, and 119 responses were provided. The majority of these, however, did not highlight further gaps, but provided more detailed information on the areas of provision already listed in the report. Some respondents gave responses relating to gaps in provision when asked for 'any other comments' at the end of the questionnaire. The responses given there are included in the discussion of these general comments.

Eleven of the responses received related to specific aspects of children's services. Firstly the lack of provision of specialised chairs (eg with three wheels or with bigger tyres) for children living in rural areas and farms was highlighted. Also noted was the difference that the provision of a wheelchair can make in determining whether a child is able to attend mainstream school or not. The transition from child to adult services at the age of 18 was felt to be poorly managed, and at the other end of the age scale, services for the under 5s were considered inadequate. Respondents believed that there should be specific staff dedicated to children's services.

Three respondents identified people with progressive diseases as a gap area in equipment provision, noting how disability can change gradually and the associated impact on the carer(s). Carers as a whole, were identified by four respondents as being inadequately considered in the provision of equipment. This has implications for the carer and the wheelchair user.

Two responses related to people with limited functional mobility. Both centred on the need for some individuals falling into this category to have access to a powered chair for outside use, even though they might not be eligible or able to have a powered chair for indoor use.

As well as the temporary need for a chair following injury or an operation, temporary provision is also required for specific occasions such as holidays, visiting relatives and attending health centres. Temporary provision was highlighted by 12 respondents as being inadequate.

Areas with gaps in provision, not already highlighted in the report and mentioned by those questioned, included the elderly, particularly in rural areas, (21 responses), individuals over 25 stones, which has major implications for carers (12 responses), nursing/care home residents (8 responses), learning disabled adults with postural management issues (5 responses), people with particular physical problems such as heart conditions, diabetes and amputees (4 responses), and individuals living alone with no carers (5 responses).

The provision of specialist chairs (15 responses), powered chairs (16 responses) and also specialised seating (8 responses) was highlighted frequently as a gap in provision. There was felt to be a gap between the basic chair provided to some users and that actually required to suit their lifestyle. Examples include the supplying of specialist sports chairs for people whose wellbeing is geared around sports, or the provision of a head rest and tilt-in space facility for those needing to rest during the day. Likewise, accessories such as cushions and leg rests, which are key to the comfort of the user, are often not available as required. Respondents felt very strongly that the eligibility criteria for powered chairs needed to be broadened to include people who were able to manage without a chair in their own home, but required a chair for outdoor use. Specialist seating for those with progressive diseases, and with complex postural difficulties, is felt to be a neglected area and should be considered in conjunction with the provision of chairs.

Lastly, 21 responses were provided which related to the structure, funding and running of the wheelchair service rather than directly to the gaps in the provision of equipment. These included comments on the need for a more a holistic approach to the assessment of clients for chairs, and a desire for a more responsive, customer driven service.

Section 7.1: Staffing

With 95% of respondents indicating support, the overwhelming majority of respondents would prefer that NHS Education for Scotland ( NES) should conduct a training needs analysis for wheelchair services staff.

Section 7.2: Staffing Skill Mix

An overwhelming majority of respondents (93%) indicated that staffing of wheelchair centres and outreach clinics should be based on national agreement about numbers and skill-mix levels, but should be flexible enough to allow for local recruitment conditions with the skills of medical staff being reserved for those individuals who need complex or additional clinical intervention.

Section 8: Funding

Respondents were asked to indicate which of a number of funding schemes they would find attractive. Flexible funding found greatest support with respondents, with 66% indicating support for this option. Least support was given to hire purchase schemes which was supported by only 30% of respondents.

NB: Respondents could indicate more than one type of funding scheme to be attractive, therefore, columns total more than 100%.

Other comments

The final section on the consultation response form gave respondents the opportunity to specify 'Any other comments' that they wished to make. A significant proportion of respondents used this section to provide comments on specific sections of the consultation, some giving the rationale for the responses they had given in some or all of the sections, whilst others made general comments or comments on topics not covered in the consultation. All the comments were analysed to identify the major themes emerging, and in addition to the areas corresponding to sections in the consultation response form, seven additional themes were identified. In total then there were 13 themes emerging which were as follows: Structure of the service; Accountability; Assessment; Provision of equipment; Maintenance of equipment; Staffing; Funding; Current service; Reuse of chairs; Exemplar services; Integration with other bodies; Children's issues; Provision of information. Each of these themes, and their related issues, is discussed in detail below. As this thematic analysis approach was adopted, it should be noted that not all comments given are covered. Some comments provided were very lengthy so this summary can only offer a flavour of the material covered. Not surprisingly, the greatest number of responses centred on funding.

Structure of the service

A desire for more local services was expressed, particularly for maintenance. There would be considerable benefit in having local clinics for people with complex needs who often find it very difficult to travel to centres. This could include clinics in schools for children with complex needs. Local staff are more likely to know and understand the environment and situation of the client. Definitions are required, however, on what exactly is meant by outreach clinics, satellite clinics and regional centres, and the level of provision that they would each offer. Also efforts must be taken to ensure equity of service to avoid 'postcode provision'. Further research into the location of the clinics was suggested, taking into account demographic trends.

Accountability

There was a strong feeling among respondents that standards and targets were required to improve the service provided. Benchmarking and auditing were also considered appropriate. All relevant professions, as well as users and carers, should be involved in agreeing appropriate measures to be assessed. It was noted that work had already been done in this area as part of the ReTIS project ( http://www.retis.scot.nhs.uk/) and that this should be built upon in the future.

Assessment

Separating the assessment and provision components of the wheelchair service was generally not looked upon favourably. It was felt that the assessing and providing of a chair was an iterative process and therefore the two components could not be effectively separated. Also greater delays could result from the need to transfer information between two services. This issue was felt to be strongly linked to resourcing and it was suggested that if wheelchair services were adequately funded, there would be no conflict between prescribing the most appropriate device and providing that device. Some respondents suggested, however, that assessment has been successfully separated from provision elsewhere, and the example of the Greater Glasgow Independent Living and Equipment Service was given. Having the two aspects separated would highlight clearly unmet needs.

As evidenced by the large percentage of respondents selecting Option 3.3B, assessing less complex user needs in the community was felt to be a sensible option. It was stressed by many of the respondents, however, that additional resources would need to be made available to community staff to enable them to take greater responsibility in this area. Also noted was the need for good joint strategic and operational planning between the NHS and local authorities to ensure professional and managerial accountability if responsibility for assessment was spread out. Some of the more negative responses to Option 3.3B expressed concern over cases which might appear superficially simple, but would actually require complex assessment, and others suggested that community staff should receive training in appropriate referral rather than undertaking assessments.

While having a planned review assessment was considered a good idea, respondents were clear that firstly more resources need to be made available to allow this to happen, and secondly that the timing and details of this review should reflect individual need and not be one size fits all. Audits could be undertaken to determine best practice in reviews for different client groups. Some respondents did worry about the cost-effectiveness of review visits for all and suggested, instead, the use of routine telephone follow-up and improving education for professionals so that they are more alert to indications for reviews. Individuals should always have the option to self refer if they feel that they require a review assessment sooner than the specified date.

A view coming out strongly throughout many of the responses was the need to adopt a holistic approach to wheelchair assessment. Consideration must be given to the whole lifestyle of the client and not just their medical needs. The long-term health needs of the client must also be taken into account and wheelchair/seating services should form part of a total postural care package.

Provision of equipment

Some respondents felt that having the NHS as the sole state supplier of chairs would ensure that clients were assessed by staff with appropriate skills and provided with chairs that were suitable for them. Others felt that having a multiplicity of wheelchair providers would be similar to the situation for other aids and would increase patient choice.

Currently the range of NHS chairs is felt to be very restricted. Comparisons were drawn between prosthetics where state of the art high tech equipment is supplied, and the unavailability from the NHS of chairs employing modern design technology. Consideration needs to be given to chairs for rural locations, greater provision of powered chairs, reducing effort for carers in manoeuvring chairs, and the provision of more than one chair to some clients. A national evaluation of equipment involving users and providers, would encourage changes and improvements in design.

Lack of availability of chairs for nursing home residents was a concern to a number of respondents. The wheelchair services expect the nursing homes to provide the chairs, but this frequently doesn't happen, leaving individuals having to use someone else's chair or provide their own. There are also considerable delays in patients in hospitals receiving chairs, resulting in inability to access rehabilitation services, and the risk of falls and pressure sores.

Maintenance

In-house maintenance was felt by many to be the most cost-effective option, offering more control over standards and performance. WestMARC brought maintenance in-house and this was thought to have resulted in significant improvements in the service provided.

It was felt by several respondents that more information on the costs and benefits of PPM was required to enable them to make an informed decision regarding this option. Most seemed keen on the idea, suggesting that the scheme would help to maintain equipment at a high level, but felt that significant additional funding would be required. A risk management approach to PPM could perhaps be adopted to control some of the costs. The need for such a system in terms of fulfilling health and safety requirements was noted.

Opinions on the use of local providers to offer a maintenance service varied. Some queried whether small providers would want to develop the necessary infrastructure. It was stated that the AA/ RAC had been approached previously on this matter, and had not been keen. AA/ RAC vans are too full already to permit the carrying of additional spares and equipment. Others felt that garages and bike shops could provide a useful service reducing delays for users, especially in remote areas. It was suggested that users themselves be allowed to keep spares if they wish. Puncture free tyres are now available cutting down the need for this type of repair.

Whatever their views on where responsibility for the maintenance of equipment should lie, respondents wanted a flexible, easily accessible service with evening and weekend cover. Users should be able to contact the service electronically. Appointment times should be specified and the service should stick to these. It appeared that repairs are often done in the user's home, but when chairs are taken away, a like for like replacement should be provided.

Staffing

Respondents strongly supported the role of NHS Education for Scotland ( NES) carrying out a training needs analysis for wheelchair services. It was also felt that NES should have a role in defining the skills required to provide for a more devolved service and that detailed workforce planning should be undertaken. Wheelchair centres would be best staffed by a multidisciplinary team to cater for all aspects of the user's needs. The implications for training, if there are a greater number of local services, were highlighted and also the challenges in recruiting bioengineers and certain allied health professional ( AHP) posts noted. It was suggested that wheelchair centres could provide employment for disabled people, both in administrative posts and in the repair and maintenance of wheelchairs.

A number of comments and suggestions were made regarding the staff training that should be provided, with the involvement of service users considered to be crucial. It was felt that there should be more informal sharing of ideas and experiences between centres, and that shadowing would be very useful. Manufacturers and suppliers could be asked to give training courses at their own expense. In terms of particular staff groups, it was suggested that therapists in hospitals and social work services could have rotations or secondments to the wheelchair service as part of their continuing professional development ( CPD). All relevant hospital staff should have training on wheelchair health and safety issues and maintenance. The training needs of carers must also be considered. Staff in wheelchair centres need improved customer care skills.

Funding

The most common point made in the response form was the need to increase funding for wheelchair services. In terms of how this funding should be organised, there were a variety of responses. Respondents were nearly all in favour of a more flexible system to meet user needs, however while some favoured the options suggested in the consultation report, including multiple options to suit varied needs, others felt that all funding should be through the NHS to ensure equity of provision. Other approaches might lead to two-tier systems. They felt that all clients should have access to increased choice, but through the NHS. Some respondents felt that wheelchair users already have significant additional expenses as a result of their conditions and should not be asked to pay additionally for what they considered to be a basic right. Having to finance a chair would add to the stresses and strains already being experienced. Whatever approach was adopted, respondents felt that a one-year pilot should be carried out in a single location before rolling out the scheme to the whole of Scotland.

There was some support put forward for voucher or top-up systems, with some respondents feeling that it would enable greater user-led assessment and choices, and noting that the opportunity to fund extras could have a huge impact on self worth and mobility. Others suggested that it would promote inequity and inequality, result in extra costs for patients and extra administration for the NHS. It was alleged that such a voucher scheme was fraught with problems when it was introduced in England, with uptake being much higher in affluent areas. According to one respondent, a health economic analysis of the English scheme concluded that it was not cost effective.

A variety of opinions were expressed on the suggestion of sharing wheelchair funding between agencies. Most respondents felt that this would not be a good idea, with some suggesting that it would be a 'logistical nightmare', or that other agencies do not have sufficient resources either. A view was expressed by others, however, that responsibility for costs should be shared, for example with education for chairs required for schools and Further Education use, and the Department of Work and Pensions for chairs required mainly for work. Some respondents noted that this was already taking place. It was suggested that under the Joint Futures agenda, it might be possible to justify the provision of very complex expensive equipment resulting in gains for one agency, by that service cross-funding the provider of that equipment.

Leasing/hire purchase schemes did not gain much support. They were thought unlikely to be cost effective - indeed one respondent states that such systems had been found not to be effective when costed by Scottish Health Service Supplies. Concerns were expressed about what would happen to customised chairs at the end of the lease periods, how the length of the lease periods would be determined, and the unsuitability of such arrangements for clients with rapidly deteriorating or terminal conditions. It was suggested however that leasing might be more popular than outright purchase as chairs do not hold their value.

Several general concerns emerged in relation to all- or part-funding, by clients. Firstly it was felt that national procurement saves money. Any cost reduction through competition generated by having a multiplicity of providers is likely to be offset by a loss of bulk purchasing power to the NHS. There was a lack of clarity about where the responsibility for assessment would lie when purchasing privately. It was felt that clients would still need advice from the NHS to determine the most suitable product for them. There was a potential for them to buy equipment not appropriate to their needs. There are also issues around ownership and responsibility for maintenance. It is not clear whether the NHS would continue to carry out maintenance on these chairs. Also, many users require major adaptations to their chair, and it is uncertain who would finance these. Some respondents were worried that their Motability allowance would be required for wheelchair purchasing, when this is already used up in purchasing a car.

A number of respondents pointed out that there was insufficient information available on the costs and benefits of each suggested funding option to allow them to make an informed choice.

Current service

Respondents felt that the current service is inadequate. In particular, the lack of flexibility in the system was noted. A far more flexible system which can allow for the growth of children, the need for power chairs for outdoor use, varied carer needs and the terminally ill, is required. Other areas attracting criticism were the excess paperwork, the time taken for visits to the centres, lack of specific dates for reviews and the absence of evening or weekend clinics. The inefficiency of having GPs signing for wheelchairs rather than district nurses, physiotherapists and occupational therapists, who often know the patient better, drew particular criticism. It was felt that the service had suffered from a history of underfunding and lack of research and was very reactive in its approach. Assessment was felt to be driven by available resources rather than client needs.

Delays at various stages in the process were a concern to a number of respondents. There are long waits for appointments, delays in obtaining a chair - which in nursing homes often means residents using someone else's chair, delays in repairs being carried out and adaptations being made, and the time taken to provide chairs for people needing customised seating is often too long. Waiting can lead to social exclusion, mental health problems and increased morbidity.

There was a general feeling that greater clarity in the vision and purpose of the wheelchair service is required. It is currently unclear whether the goal of the service is to provide mobility, or to address issues of social inclusion and quality of life.

Reuse of chairs

It was suggested that it is more efficient, and better for the environment, to reissue chairs to other clients after use. Another respondent points out however that modern chairs are difficult to reuse, [presumably because of issues around adaptability]. Clearer guidelines are needed for users, families and carers on what should be done when they are finished with a chair. A bar code system could be employed for issuing and receipting of chairs.

Exemplar services

Interest was expressed in the wheelchair service in use in Norway and an opinion given that the Scandinavian model seems like the best available.

Several respondents picked out the service provided to clients in Fife as being particularly good. Front line staff are described as courteous and helpful, and the model employed for meeting the needs of clients with profound disabilities drew particular praise. The service provided by the Dundee centre was felt to be exemplary in many areas and surprise was expressed that this was not recognised anywhere in the consultation document. Other services drawing particular praise were the employment of disabled people in wheelchair services in the Isle of Man and the repair van provided by the Inverness centre.

Integrated approach

It was a concern to a number of respondents that future wheelchair services must integrate more with other agencies concerned with mobility. Particular groups specified were NHS physiotherapists, government agencies, local authorities, transport agencies and charities. There is a need to work with local authorities to address issues relating to pavements and road crossings. Working with, and helping to educate, Department of Work and Pensions and social work staff could help to improve the integration of wheelchair users into the community. The current role of the Red Cross in providing chairs was felt to be very important and it was suggested that services that cannot be provided by the NHS could be met by working closely with charities and also the private sector. Pressure could be put on publicly trading companies to provide chairs for people visiting their sites. To reduce administrative overheads, short-term loan of chairs could be handled through social work departments or the voluntary sector, perhaps making use of local Shopmobility offices, rather than the statutory wheelchair service.

Children's issues

Services for children attracted a lot of negative comments. These mainly related to the impact of time delays, with children growing out of chairs and not receiving another one in a timely manner, or indeed being too big for the next chair by the point when it arrives. It was felt that children should be assessed by specially trained services and have their needs considered separately from adults. This occurs currently in Lothian. Children nearly all require chairs because of ill health, unlike many adults who require them as a result of ageing, and reassessment is particularly important for them. A view was expressed that the emphasis of the consultation was very much towards adult services and that children had not been adequately considered, or indeed consulted. UK wide research by Barnardo's on the provision of wheelchairs to children, will be published in March 2006.

Provision of information

The quality of the information available needs to be improved and full use made of technology. For example, a website could give information on referrals and progress through the system. Specific delivery dates for the equipment should always be given, guidance provided on routine (self) maintenance and information made available on accessories such as raincovers and sunshades. After a chair has been delivered it would be beneficial for a member of staff to visit the client and explain how to make adjustments, provide details on insurance cover, and contact points for maintenance. Such a visit would also ensure that the chair is being used, and used properly. A single point of access to the wheelchair service for clients would be beneficial. It was also felt to be important that information should be made available to clients on all the possible wheelchair options, not just those available through the NHS. Wheelchair user groups independent of wheelchair services should be supported, and consideration given to setting up a Managed Clinical Network for wheelchair services.

Consultation process

A number of comments were given relating to the consultation process itself. Appreciation and support were generally expressed for the undertaking of the consultation exercise, however, there was considerable criticism, especially in the group responses, of the consultation document itself. This relates mainly to the lack of evidence and data provided to back up the statements made, the leading nature of the questions asked, the lack of context provided, e.g. legislative developments, personnel issues, failure to reference other relevant research and the vague language used. A number of factual errors and omissions were pointed out and reference should be made to the summary below and the response provided by the Scottish Rehabilitation Technology Service Providers Forum (ScotReT) regarding these. Lastly the use of cartoons in the document was felt to be very inappropriate.

Errors

• Remploy also manufacture at Springburn.
• Warranty information provided is incorrect.
• NHS is not the sole provider of chairs.
• Presumption of 5-year equipment life is incorrect.
• MAVIS (Mobility Advice and Vehicle Information Service) is in the same building as the Edinburgh wheelchair service, but is a separate national service.
• Motability already provides a hire purchase and lease scheme for wheelchairs.
• Additional errors listed in the response provided by ScotReT.

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