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Scottish Disability Equality Forum along with thistle logo in purple and green

Consultations

NHS Review of Wheelchair and Special Seating Services in Scotland

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Replies to Wheelchair consultation by SDEF members

The Scottish Disability Equality Forum (SDEF) works for social inclusion in Scotland through the removal of barriers and the promotion of equal access for people affected by disability.

It is a membership organisation, representing individuals with any type of impairment, disability organisations and groups who share its values. It aims to ensure the voices of people affected by disability are heard and heeded. We have over 130 disability organisations as well as individual membership. These organisations cover the whole of Scotland from the Shetlands to Dumfries and Galloway.

SDEF promotes access in its widest sense: access to the built and natural environment and access to the same opportunities as are enjoyed by other people in our community.
It takes a broad definition of access, within which it focuses on access to the environment and access to information and mechanisms promoting two-way communications. It campaigns to improve access in these areas and seeks to become a free source of high quality information on them.

We have incorporated the views of our membership having put the undernoted response out to consultation with our members.

General Comments

SDEF:� The contract specification set out in some detail the issues that required to be addressed in the Review. As outlined in the consultation paper these include gathering the views and experiences of service users and carers; reviewing how NHSScotland wheelchair centres deliver the service; exploring relevant trends in technology, medicine and demographics; identifying key issues for the service and presenting these at a national conference. Although the comments concentrate on wheelchair provision this response also includes meeting users’ special seating requirements.

SDEF feels that it is particularly disappointing that in the draft and consultation scant reference has been made to the many reports made by both the statutory and voluntary sectors over past years. However, the difficulty has been that there has not been an effective sounding board to effect change. This Review should now provide that sounding board for the Minister for Health and Community Care to respond to the need for change.

1 Structuring the Service, Making it Local

The consultation offers three options for consideration.

Option 1A Maintain the five centres as at present, but with more outreach clinics.

Option 1B �Increase the number of regional centres, splitting the Glasgow ��and��� probably� the Edinburgh centre, with additional outreach clinics; less complex cases could be seen locally in outreach clinics with more complex cases being seen in the seven/eight regional centres.�

Option 1C �Restructure the service across Scotland to meet user needs, taking account of geographical and demographic patterns, along the lines of some of the models seen in other countries.

SDEF’s Response:

Option 1C

Restructure the service across Scotland to meet user needs, taking account of geographical and demographic patterns.

There needs to be a service redesign such that it underpins the Auditor General’s comments that there has to be clarity concerning costs, responsibilities, accountability and efficiency. The picture is blurred as a result of how the service is funded.

SDEF does not see how this can be improved because of the parochial nature of health boards, given their contributing on a formula basis to wheelchair centres that do not formally reflect services for money received within individual Health Board areas.

SDEF recommends that funding policy should be reviewed with a view to top slicing these funds from the health boards and having them paid direct to a new national wheelchair service, within the NHS, as a national support service for Scotland. It might be similar to how the blood transfusion service is run across Scotland but there are other options that could be adopted for a nationally managed service.

There could be a new directorate to ensure equality and quality of service throughout Scotland rather than a postcode lottery. This would not necessarily mean that the five centres would be abolished, rather that a degree of consistency would emerge by having national standards of assessment, standard measures of performance and would be neatly taken under the ambit of the Minister’s initiative for cutting waiting times and at the same time honouring the Kerr Report by having both centres of excellence for complex cases and having services delivery locally, where appropriate, through satellite clinics or mini wheelchair centres. This could embrace the Joint Equipment Service, in order to improve the supply of all types of assistive devices to users.

�2 Making the Service Accountable

SDEF’s Response:

Option 2B

Have a single wheelchair service co-coordinating body for Scotland, responsible for all wheelchair centres and funded directly by Scottish Executive Health Department, responsible to them and managed by a single organisation.

SDEF’s recommendation:

A national directorate for services can direct the centre and their satellites to implement the tenets of the Kerr Report in delivering services closer to the patients. An advantage would be encouragement of satellite services; a dedicated repair service, where users know their local engineers; service standards; training in equipment use; increased patient comfort eg. Less waiting time, less patient transport; and a customer driven service that gets it right first time.

Advantages:

The manner in which the Wheelchair Centres are financed blurs accountability and fails to demonstrate to users and to the NHS the Wheelchair Services efficiency and effectiveness and that it is acceptable to its users and carers.

Recent comments by the Auditor General for Scotland underpin this view when he told Holyrood’s all-party audit committee that “the NHS had still some way to go to provide a comprehensive picture of its activity, costs and quality of treatment”.

Reflecting on the Auditor General’s comments, there would be clear accountability established for a wheelchair service nationally. There would be a distinct incentive for existing staff in the service to be part of a service of excellence that would encourage innovation, training and status.� The service has failed a substantial number of users and carers through having a lack of identity by having a mechanism to champion the Wheelchair Service.

A substantial number of service providers are unable to determine their active case load. There is an issue relating to management of patient records - a link to a nationally established CHI (Community Health Information) index would be useful as envisaged by the Scottish Ambulance Service.

The benefit to the user of a directorate is that the new body would look specifically after the needs of the Wheelchair Service. There would be sufficient staff resources to ensure a team approach consisting of consultant, occupational therapist and physiotherapist and other professionals where appropriate. The user would also know who to direct complaints towards and be better informed as to repair procedures by the existence of area dedicated repair engineer.

Since 1996 NHS Health Boards have been responsible for the Wheelchair Service who have been content to have their functions in this respect carried out by the five NHS Wheelchair Centres.� Research has revealed that in that period from 1996 to date inflation increases of 50% have been received by Health Boards which have not been fully reflected in the Wheelchair Services which they fund. Apart from one recent initiative by a Health Board there are no Service Level Agreements in place.

Finally, under the present structure users are unclear about where to direct complaints and are wary of complaining in case it affects their personal service. A single accountable body would have clear standards and procedures for taking issue when the service failed to meet those standards. The satellite service to deal with, in particular, small repairs and problems is seen as being very important.� Accountability for providing this is also essential.

3.0 Assessment

SDEF’s Response:

In so far as users of the service are concerned SDEF considers that the most important parts are as follows:

Mobility is vital for many functions of daily living including participation in vocational, educational and social activities. All of these contribute to an individual’s quality of life and capacity to meet personal life goals. They also impact directly on the quality of life of carers. More widely, there is an economic and social cost to society of not meeting user and carer needs.

All those who need wheelchair and special seating services are entitled to expect that the service they receive is efficient and acceptable which meets the highest standards deliverable within the resources to be provided. Services will need to recognise the lifestyle of the wheelchair user and the needs of carers.

SDEF believes that The Consultation and Draft Reports do not highlight sufficiently strongly and clearly enough the fundamental issues that are essential to meeting these needs.

In order for the NHS Wheelchair Service to embrace the tenets of the Scottish Parliament’s policy on social inclusion then in SDEF’s view the Service will fail to address the main concerns of users and carers if there is not a shift in the following policy areas:-

1.Break away from prescription solely on the basis of medical need and recognise life style (which may impact on carers).� Most wheelchair users are dependent upon their carers to a greater or lesser degree for the lifting of wheelchairs for transport purposes and carers’ needs are currently ignored from the assessment.� Research shows that carers find wheelchairs, in the main, too heavy. Fixed as opposed to adjustable handles can also be an issue for carers and attendants.�� ������������������ ���������

2.The current policy is for the NHS Wheelchair Service to only issue power wheelchairs to those users who require them for indoor use and not solely for outdoor use. In practice such users are issued with indoor/outdoor chairs while those who do not require to use that type of wheelchair indoors are debarred from being issued with a powered wheelchair for outdoor use.

3.The service should adopt a customer oriented approach. The ethos of the Health������� Service is to improve the quality of life - a suitable wheelchair just does that. The service should also record unmet need which should underpin funding extension of its Business Plan.

Traditionally the basis of assessment used by the Wheelchair Service is to use it as a means of rationing scarce financial resources rather than making an impartial assessment of a user’s and carer’s needs.� In practice users and carers gain the impression that the assessment process simply consists of what the service can provide rather than what is required to meet the their needs and therefore there is no mechanism to record unmet need, which is crucial to provide evidence for strategic planning and for the attraction of more money for the service.

If assessment is divorced from funding then there is a clear vehicle to record unmet needs, vital to NHS Scotland to carry out strategic planning.

Just as important as the above is the need for the Assessment process is to take account of the special needs of children.� Parents in the main need to articulate the needs of their child and this should be recognised by the Service.� SDEF recommends that there should be a dedicated service for children but that does not mean that the service should be physically divorced.� The transition between the children and the adult service should not be based solely on age but rather reflect the desire of the user, where the expertise gained by the Children’s Service may be utilized for the benefit of the user as an adult.

Option 3.3A

The NHS wheelchair service continues as the sole assessor for wheelchairs and special seating, but with assessment separated from provision of equipment.

SDEF’s Response:

SDEF have no difficulty in the NHS being the sole assessor provided that the Assessment is meaningful and appropriate.� Assessment needs to take into account lifestyle and carer needs. Sometimes services only provide users with what they can; resulting in unmet needs [they could then apply for funding on this basis].

OR

Option 3.3B�

The NHS regional centres assess complex cases only, while users with less complex needs are assessed in the community and by community based professionals, whether employed by the NHS or by local authorities

SDEF’s Response:

SDEF agrees, however, there has to be a development for a basis of assessment for a standard wheelchair which can be carried out on a tick box basis and which meets the user and carer’s needs. This could be achieved electronically with users completing part of the assessment themselves, resulting in reduced timescales. The adoption of ICT to make assessment easier and more timely should become an established part of the process. Users could make online submissions in line with changing needs. Most standard wheelchair issues fall in to this category.

Users should have a local point of contact (POC) that they can go to for any issue, being referred on to a specialist if necessary.� However, the local POC should monitor the service provision by the specialist and then take responsibility for arranging or undertaking maintenance and repair once the specialist has issued the necessary equipment. This would be possible if a locally dedicated repair engineer were adopted for each area.

Option 3.4A������

The initial assessment process should 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�

SDEF’s Response:

Recording systems should be able to prompt when reassessment should happen and a letter should be issued to the user from time to time checking that the situation has not changed and that the wheelchair does not require to be repaired. Just as important as periodic assessment is when a chair is issued in a short period after the issues the user’s views are sought as to whether the wheelchair meets their needs or requires adjustment. If a customer service approach is embraced then the user/carer should be invited to sign it off.

SDEF are not persuaded that the Wheelchair Service has sufficiently robust IT systems which are adequately up to date to meet these challenges.

4 Provision of Equipment

Option 4A

The NHS continues to provide all wheelchairs following assessment.

5 Maintenance of Equipment

Option 5A

The wheelchair centres continue to run the maintenance and repairs system, but with a programme of planned preventative maintenance (PPM) introduced in all centres.

SDEF’s Response�����

Highlands had a successful man in a van pilot. SDEF believe that Westmarc, which serves half of Scotland’s population, could adopt this approach.� A dedicated accredited local repair man might be an option. A scheme of this type would also work well in the more rural areas of the country.

Planned Preventative Maintenance (PPM) - a regular letter to determine if the wheelchair is in good repair could be re-instated in some Wheelchair Services but had been discontinued on cost grounds.

SDEF has no evidence to suggest wheelchair centres embrace a proper risk assessment programme. Every type of chair should have a risk assessment. It should influence the approach taken to address preventative maintenance. Having a dedicated local repair person could enhance the feel good factor for user and carer and allow them to build up a positive relationship with the wheelchair service.� Preventative maintenance measures would prevent the continued use of faulty equipment with the potential for users to aggravate medical conditions or harm themselves as a result of equipment failure.

6 Gap Analysis

Are there any additional gaps?

SDEF’s Response

The generic gaps in service which have been overlooked in the Reponse form but reflect the majority of views expressed at the sub-regional conferences held as part of the Review are:-

Service Delivery is seen as slow and remote with added transport issues.

Because there are only five Wheelchair Centres with limited outreach facilities both the assessment, supply of chair and its maintenance is often seen as slow and remote and is unacceptable.

Where a user requires transport the Wheelchair Centre advises the user to contact their local GP.� This is convoluted and needless and adds yet another link in what is already a long chain.� Wheelchair Services should arrange transport direct with the Scottish Ambulance Service.

The Assessment of Needs is not independent and is not holistic.

As the needs assessment is coloured by the requirement to ration the money that is available for the purchase of wheelchairs, which are prescribed on the basis of clinical need, this frustrates the aspirations that users and carers have regarding their quality of life. Less than half the respondents to the Forth Valley survey had been asked about their home environment and only one third of users were asked about how their cars would carry their chair. Long term users of self-propelled wheelchairs and new and long-term users of attendant-propelled wheelchairs recorded lower incidences of being asked about what they wanted from their wheelchair and about their home environment. Over two thirds experienced problems as a result of this with one of the most common problems reported being “unsuitable to needs”.

The Service is not seen to be Customer Driven

The Wheelchair Service traditionally delivers its service from a clinical stance and not from the customer, user’s and carer’s point of view and therefore the importance of customer service is not the driver of the service.

In addition there is no provision for supplying

������� power wheelchairs to user over 25 stone in weight;

������� power assistance for attendant controlled wheelchairs;

������� greater assistive technology provision.

7 Staffing

Option 7.1A������

NHS Education for Scotland should conduct a Training Needs Analysis for wheelchair services staff.� ������������

SDEF’s Response:

There should be a skills and training needs analysis. Financial resources should be available to carry out training. Without training the quality of service delivery is diminished. Training should include telephone reception technique and awareness training for van drivers. Indeed, van drivers should be trained to take greater responsibility.

Option 7.2A

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.� The skills of medical staff should be reserved for those individuals who need complex for additional clinical intervention. �������������������������������������������

SDEF agrees. Staffing should be based on nationally agreed standards and skill mix levels. Whilst this is welcomed and supported, SDEF draws attention to where the drivers for these standards can be supported. SDEF places considerable doubt on the accuracy of Westmarc’ figures of active users as shown in Frontline’s draft report. See Independent Survey of the Users of the NHS Wheelchair Service Within Forth Valley. Given the confidence levels on these figures no meaningful comparisons on staff ratios can be drawn between Wheelchair Centres or to derive standards and skill mix measures nationally.

8 Funding

Which of the funding schemes outlined in the report seem attractive to you?�

SDEF finds it difficult to make constructive comments on the basket of funding initiatives outlined in the consultation and draft report. SDEF draws attention to the recommendation that the funding of the wheelchair service be invested in a national organisation. It is up to NHS Scotland to decide how best to fund its services but SDEF would suggest that the purchase of new wheelchairs be capitalized and written off over an appropriate number of years.

Regarding a voucher scheme, the research by the Council on Disability (Stirling District) suggests that there is demand for such a scheme to allow users to purchase a chair which better fits their needs. However, if the Minister does accept the need to inject more funds into the service, with a view to supply chairs which reflect lifestyle and carers’ needs then a different view might be explored. SDEF, however, recognizes that there are significant numbers of users who have purchased their own chairs privately and are required to suffer the burden of the maintenance of these chairs. SDEF expresses the view that a hybrid voucher scheme could be created for Scotland to recompense such users for maintenance costs. SDEF believes it would be unlikely that a wheelchair service would consider taking over the maintenance of these chairs given issues of suitability, spares and repairs but users would welcome such a scheme if it were adopted.

There is a difference between mobility problems and essential users i.e. those with permanent mobility problems, who cannot stand and have no support at home. If a chair breaks down the user is stuck. In the draft report cost of service is �14m, 60% of these costs are for purchase of wheelchairs. There is evidence that there are not enough powered, special seating or light wheelchairs and that there should be more funding for this. A substantial number of these requirements can be supplied by the private sector if sufficient funds were made available. This would have an impact on waiting times and alleviate the frustrations of users and carers and improve their quality of life.

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