messages presented to the Deputy Minister for Health and Community Care at the national conference
WHEELCHAIRS
SERVICE
FUNDING
NORWAY
PERSONAL VIEWS/SOCIAL INCLUSION
JOINT FUTURE
MISCELLANEOUS
WHEELCHAIRS
Wheelchair users
Wheelchair users chair should be checked and reassured on a regular basis.
The chair should be checked for health and safety reasons.
A part of society
With a powered wheelchair I would be able to participate in society and I would not have to wait indefinitely, isolated within the four walls of my house.
Should be listened to at assessments instead of being tricked into propelling a manual chair with one hand and to be turned down for a power chair.
Fit the services to the person
The wheelchair user is the true 'expert'. A wheelchair is more than a mode of transport, it is the key to quality of life.
Priority service
Need for those with rapidly progressing conditions to be given quick access to assessment and delivery of suitable wheelchairs, e.g. motor neurone disease - average life expectancy from diagnosis is 14 months.
Identify the wheelchair service model for Scotland:
- plain English for all stakeholders. Little translation needed
- each area can then show how to meet the local needs against the model
- pathways to the service would be clear
- meet needs clearly listed - look for funds
- no provision of equipment.
Consider holistic healthcare and save yourself a fortune
People with profound and multiple learning disabilities and their carers have a right to self refer and participate fully in the assessments process as regards to their most appropriate wheelchair requirements. If this was considered then attendant wheelchairs would be made available when necessary.
Equitable services for all ages and provision of wheelchair for elderly in nursing homes.
Better wheelchair provision and wheelchairs to be promoted with cushion equipment.
There is a need to develop a robust database nationally. Also to develop a national scoping system to prioritise waiting lists and deal with problems in relevant and diverse ways.
Can we please have an improved wheelchair service based on each centre's area using 'best practice' to provide standardised quality service across the country?
Adopt a 'deliver what you promise' approach to the findings of the wheelchair service review. It's the only way of 'moving forward'.
Information given to users (carers) on receipts of appearance - with follow-up helpline essential.
Standardisation of wheelchair services with training for services.
The wheelchair service in Scotland should maintain the lifestyle of the individual post-illness or accident or, in the event of a child being born with a lifelong disability, the service should enable equal opportunities to enjoy a high quality of social inclusion.
A repair service for wheelchair users who have bought there chair privately, i.e. vouchers towards cost.
£140 per centre is not nearly enough for wheelchair provision.
A specialised seating system and chair = £120 approx.
Disabled children and young people
It is essential that services for this group are separate to adult users. Timely provision that enables children and young people to develop social skills and integrate into society is not only a right, but allows them to grow up to be active members of society - college, uni, and tax payers!
Support for staff
I am fully in agreement that the wheelchair services need a shake-up and a huge increase of funding, but I am concerned that this review will end up pumping cash and new ideas onto the already stressed and overworked services. I would very much like the Executive to ensure that the staff on the ground who have to implement these changes get the full support of the Executive at all stages and all levels, and the public is made fully aware that the suggestions will take time to implement. Please don't drop us even deeper in it!
Increase the funding for wheelchairs and other assistive technology devices and provide powered wheelchairs more freely to improve quality of life and levels of independence.
Better wheelchairs
Much more choice as this leads to better posture which means better quality of life.
Mobility for everyone.
Using the members of Shopmobility Scotland
The NHS should work with local shopmobility groups with reference to provision of temporary equipment as there are now many groups around Scotland. As all the shopmobilitys are independent companies set up by like minded people, some Scottish Executive funding would be nice.
From the perspective of a staff member within wheelchair services. I feel that the users of services are presenting a picture of an ideal service, which will never be catered for, however many specific issues are being repeatedly issued.
Legless
Please don't leave us legless. Improve our access to and maintenance of our means to get about, have independence and live life to the max.
Outdoor mobility
Improved and easier access to outdoor places.
Improved outdoor environments, e.g. increase number of drop kerbs, less adverse/negative pavements to improve efficiency of outdoor devices.
Voice of wheelchair service staff
As an OT who has worked in wheelchair service for over 9 years I feel that the review is overdue. However as much as I appreciate the user's view of the wheelchair service produced, I feel that those who work in the service have not had an equal opportunity to voice their opinion on the service.
We work damn hard to provide a service of excellence to the high expectations of users and feel that this has been overlooked. Yes the service is under funded, under resourced and over stretched, but those of us who work in the service are committed and dedicated to the users' needs, and provide the best service we can under extremely difficult working conditions.
Time of delivery
It is not acceptable for a child with a deteriorating condition to have to wait 6-8 months for a powered chair that will meet his/her needs.
Please recognise that an enormous amount of people require wheelchairs and that each and everyone deserves the right to lead their life to the full. Money isn't all the answer, but the correct control is.
Children
When assessing children, take into account that they have the right to participate fully in school, the curriculum, a social life and sport. The criteria for self propelling is a prison sentence.
Power chair eligibility
These should be available to those who would benefit regardless of ability to push indoors.
Freedom
Until you get a powered wheelchair, you do not realise what freedom means.
Requirements for improved service:
- standardised service throughout the service
- one-stop-shop for all aids and wheelchairs
- replacement wheelchairs, automatic when repairs required.
Self-referral
Anyone can refer or themselves or another for advice and assessment or choices of wheelchairs on the market!
Wheelchair service included in one-stop rehabilitation service, addressing all equipment needs by multidisciplinary team.
Ongoing assessment at different levels depending on the individual's level.
If chairs are taken away for repair, a 'courtesy chair' should be issued temporarily.
It's like an MOT.
Holistic approach
More consideration to individual lifestyles and of their environment indoors and outdoors.
Listening to users and carers on what their needs are.
Why do we have to wait so long for repairs to be done? Repair systems should be localised and accredited.
Provision of biotechnology
Any chair which requires specific individual adaptations can take over 2 years to get to the user - even then it is not guaranteed to work as originally discussed.
Mobility aids are for more medical management. They allow for social interactions and lifestyle as well. The current service allows predominantly for the most basic of provision. Reassessment if left for such long periods that responsibly of care risk assessment and the legal issues of old condemned or faulty equipment is relied upon. In the changing climate of personal/client choice, legal cases may become more popular.
Listen to wheelchair users.
Criteria for NHS power chairs
Too strict - users should be given more information about why they have been assessed in a certain way. Nor given valid reasons. Assessment not wide enough in scope.
Wheelchairs must be supplied (to people who require them) speedily and suitably sized/shaped and postural needs of the user. They must be safe, reliable, regularly serviced (recycled as and when appropriate) by a person who has the knowledge and experience to do it cost effectively and with repairs effected in the minimum of time.
Users should be reassured regularly and frequently in case of growing children by staff who know the client and his/her lifestyle.
Meeting need
If a wheelchair could meet a need of a user or carer, then it should be provided.
1. Regular reviews of people's wheelchairs will require more manpower, but give the advantage of reducing breakdowns and prolonging the life of wheelchairs. This would result in an easier life for the wheelchair user.
2. The criteria for electric wheelchair provision is too limited.
3. There is a huge issue with back-up chairs when the person's regular wheelchair breaks down.
From a carer of a profoundly disabled person with complex medical needs
Emergencies dealt with promptly.
Attendant powered wheelchairs - not everyone is capable of using a powered chair. Profoundly disabled people rely on carers to push. My daughter also has complex health needs and we carry equipment on her chair adding weight to it. I'm exhausted pushing.
Adequate funding a reality figure
To enable wheelchair service to offer a good reliable service and not have to say the NHS. Funding cannot cover these issues, e.g. regular maintenance, choice of chair power packs on NHS and lap straps.
Provision of wheelchairs that meet the needs of the users rather than supplying cheaper inappropriate equipment. Recognition that for people with severe mobility problems more than one wheelchair may be essential for them to have a life rather than existence only.
The control of the wheelchair service by the wheelchair service is inappropriate. A transparent appeal process is required.
SERVICE
Transition from child health to adult service
Services fall apart when person reaches 18 if they have a chronic disability.
24-hour repair service.
More money for the service.
Ensure that there is accountability.
Most of us are not sick, we just have a mobility problem.
Embrace social inclusions.
Would like to see the NHS continuing with the wheelchair service but being completely modernised. Great need for skilled professionals to assess the holistic needs (a need here for encouraging people into these professions!) and for the service to be managed locally but accountable nationally.
To provide an expert and appropriate service the Scottish Executive needs to:
Carry out a comprehensive needs assessment.
Provide - planned
- co-ordinated/integrated
- locally delivered
- client/users centred
- adequately funded service.
More funding for localised services
More funding is necessary for current wheelchair services to have more local bases of skilled staff.
I'm a new staff member to the wheelchair service in Scotland and, after 3 weeks, I am becoming demotivated and stressed. The staff I work with are all very dedicated but also very much overlooked. The exercise has concentrated on what the users want, but how is this going to happen? Staff are already overworked and under extreme pressure. Be careful how you change things. If you don't, you may not have any staff to run a service. Change is needed, but the staff need to be involved and it must be modernised.
Improve the efficiency of the service.
Complete restructuring
We need a national service with a clear vision that will be applied consistently across the country. Start again and get it right. Ask the people who know what they need, and provide it as locally as possible.
If local services are wanted, significant infrastructure investment is required.
All units of assisted technology to become one service throughout Scotland.
Look and learn
Acknowledge the views of service users and carers.
Be proactive and not reactive.
Acknowledge that to invest now in a service that meets an individuals needs will cost less in the future.
Empowering partnerships
We need to acknowledge the expertise.
Knowledge of users, carers and therapists involved.
Work together to deliver a secure service.
Training is imperative for all concerned and can remove boundaries.
Assessment
There must be a holistic approach to assessment and the users' perspective has to be an integral part.
Locality of service
People should be given what they need in aide to fulfil their life, regardless of their circumstances it should be the same country wide, not different in different areas.
We need a service our country is proud of!
There should be a continuity of quality service nationally. Provision should be needs led and a more holistic assessment and treatment approach is required.
FUNDING
Voucher scheme would be a sticking plaster to hide the massive under funding of services
Research current unmet need for wheelchair services - needs of assessment of adequate funding required.
The wheelchair services are capable of doing so much more, and better. Give us the money to meet all the needs of patients and we will give you a service that will be second to none.
Funding and adequate funding
Consideration must be given to funding health and individuals and carers.
Please work to provide a wheelchair service that is centred on the wheelchair user, taking account of their health and social needs.
This requires adequate funding and integrated provision.
More funding for disabled/wheelchair users.
More provision of disabled access by law.
Less money spent unwisely, e.g. Scottish Parliament.
Less money spent on expenses for MPs.
People should be able to have a choice in the aids that they need to help them in their day-to-day life without cost.
Please fund wheelchair and social services more generously. I am a third class citizen at the bottom of the Scottish heap.
Service provider
Does £2.20 per week seem enough to you?
This is what a wheelchair and seating service currently costs.
'More money'
Users/carer choice and control
User/carer shape service.
Improved infrastructure with added resources.
Financial skilled personnel.
Wheelchair service needs to be standardised and equitable across Scotland. Better funded and more consideration to providing wheelchairs for school pupils and elderly nursing homes.
Put more money into essential service for wheelchairs users. They can't get about without them, there is always money for some things. Make it meaningful and give it to wheelchair users.
Please increase funding and provision of good quality wheelchairs and adaptations, both mechanical and electrical.
Give us the funding for staff training and equipment and you can have the service the patients need.
Require equal standardised provision which is national with the necessary funds to meet clients needs.
Equipment based on need rather than cost.
Please fund us, short term and long term, to do our job.
Bioengineer
Special seating
More funding to enable equal access to provision of assessment and equipment, and equity of provision in Scotland.
More funding required to provide.
Regular assessment of patients' needs.
Regular servicing and maintenance programme to prevent breakdowns and accidents - big impact on patients' lives.
To increase staff levels and hence service provision.
Improve staff training and development.
Proper and adequate funding
Increase funding
Less restrictions:
- funding
- criteria
- equipment choices
- when/how repairs.
Life is for living!
Money should not be an issue where people have difficulties through no fault of their own.
More funding please
NORWAY
Look carefully at what we can learn form the Norwegian model.
AT centres
Why don't we have any assisted technology centres in Scotland? Norway has 19.
Role model
Are you going to visit Norway to learn from their experienced and superior service? We need to use a role model such as this to make the changes needed.
Involve users and carers. They are the ones who know all the issues and are possibly best placed to offer solutions! We need to think far more latterly and probably visit Norway for advice.
Equality for all
Do you foresee a similar structure to the Norwegian one, e.g. users are the main priority and all disciplines are dealt with at one centre.
Have a good look at Norwegian models of multidisciplinary assisted technology centres. Better value for money as well as better service provision.
Duplicate the Norwegian model. It should be the right of every person to be able to live their lives to their fullest potential.
Decrease paper work involved in wheelchair provision, it takes up to 3 months from request to provision, in Norway it takes a maximum of 1 month.
PERSONAL VIEWS/SOCIAL INCLUSION
Equality of Service = Equality of life.
Please don't just listen - Act.
This is about the quality of people's lives, not about money. When you're a wheelchair user you want to live your life and the finances don't matter as much. Obviously there will be contrasts, but much needs to change.
Equality
Provision which allows users to have equal opportunities with the general population.
Civil rights
Everyone has the right to take a participatory role in society - self-referral the person with the disability and the carer are the professionals about their needs.
Voice
Listen, learn, act!
Right
Basic human right to be able to live an independent, active life in society.
Freedom of choice.
Decision making
Users should be informed at the start.
We need more people with a disability in government and positions of power to address issues in a relevant way.
Don't manage the deck chairs.
Make a meaningful vision and direction for the future.
Stop making us feel like 3rd class citizens.
User led.
Basic right
To be given what is needed to have a 'normal' life.
A person-centred approach to assessment
That which incorporates a holistic approach, incorporating the needs and abilities of carers and chosen lifestyle of client.
I think it is really important to establish independent living centres.
JOINT FUTURE
Need to integrate rehabilitation services (within Joint Future!)
Please make it easier for disabled people to have stair lifts installed in their homes, especially when stair lifts would give them the vital link with the outside world.
Kick start Joint Future for an integrated service.
Service has to be equitable and not subject to regional variations/postcode prescribing as at present.
Please ensure that the Joint Future initiative is made to work!
Impose Joint Future agreement on all of Scotland.
Publicise lower tax equals less service provision.
Set up website/group for all users/providers/groups to put comments and pressure on politicians to make things happen.
Wheelchairs are part of the solution to independence
Wheelchairs must move out of the medical model and into social model of provision. Joined up thinking - joined-up solution - whole system - whole lives.
MISCELLANEOUS
Why black?
Can young people choose their own colour of chair?
A website to email in problems.
Same service for rural areas as central belt.
Simple clock - to record number of miles/hours use to regulate for service.
I'm an educational professional and I've heard some shocking stories today. The system fundamentally needs more friendly - more qualified staff, better equipment and the 'one-stop' approach may also be worth a look.
Duty of care
The duty of care professionals have to adhere to can, at all times, limit the choices of the users.