June 2023
STOP PRESS: We need to hear your voice!
The Wheelchair Alliance has been successful in its application to Motability for grant funding for our second research project. This is looking at the true value of the right wheelchair: health, wellbeing, maximising your life goals are some of the ways we think the right wheelchair has an impact. However, it is wider than this and we want to hear from as many people as possible so that our independent research partners, Frontier Economics and Revealing Reality, can produce a powerful report which we will use to lobby for improvement. We plan to publish the report in November. We really need your help so please complete the Google form. (Available until August 31st 2023.)
How time flies!
We are not sure where the last three months have gone, and three long weekends in May has caused confusion on just what day of the week it is! We were delighted to see our president, The Baroness Tanni Grey-Thompson at the Coronation of King Charles III, and wondered how accessible such an old building was for the few wheelchair users that attended.
We were delighted that we were asked to take part in The People’s Panel hosted by Disability Expo and IMatter. The session was called ‘Mobility Matters’ and looked at the Mobility MOT Zone which will be at the Disability Expo in July (see more below) and also Personal Wheelchair Budgets (PWBs). We took away three things from the session: there needs to be a lot more good quality data, greater clarity around what is a Personal Wheelchair Budget (PWB) is needed, and PWBs could work better if there were more joined-up working and pooled budgets. Maybe we ought to try developing information using simpler language that would help people to know what they could use a PWB for. Watch this space…..
What we are up to now:
There has been so much change in the way the NHS has structured itself over the last couple of years. It means that many strategy’s or plans need to be looked at carefully to see if they are fit for purpose. We have been doing just that and are part way through agreeing our strategy for the next few years (although we check it each May in case something isn’t working as we hoped it would). The next strategy includes actions that were highlighted when our first research report, An Economic Assessment of Wheelchair Provision in England, was published last September. We will be
- Working hard to create an All Party Parliamentary Group (an APPG) for wheelchairs with a commitment to achieve this by the end of the year
- Consider the challenges wheelchair users experience when faced with the need for repairs
- Develop a National Advisory Board of wheelchair users to engage with senior members responsible for wheelchair provision across the nine NHS regions highlighting lived experience and therefore influencing change
Crystal Ball needed!
Who are the Wheelchair Alliance? Unless you are telepathic you may not have a clue. We seriously need to raise awareness of who we are and what we are doing to strengthen the voice of wheelchair users and lobby for change. We are busy developing some materials and you will get to see these at some events we are attending:
The Disability Expo at Excel in London on 6th & 7th July 2023. You can register for free tickets by visiting their website Disability Expo – UK’s Most Exciting and Foremost Disability Exhibition (thedisabilityexpo.com). This exhibition is dedicated to those with a disability and has a very full programme.
PMG Conference in Telford on 11th & 12th July. This is the annual conference for the Postural Mobility Group and is targeted at clinicians across the country.
PitStop
Maintenance, Repair & Replacement parts
Maintenance of powered wheelchairs has always fallen through the cracks of wheelchair services as nobody is held accountable. This has to change. There is no point striving for the delivery of the right chair at the right time if they can’t then be maintained on a day to day basis. Emphasis has always fallen on giving people wheelchairs, and rightfully so, but this is only part of the process.
Currently, we have a situation where a part may break within the chair, and whoever currently holds the maintenance contract (and so is responsible for repairs) gives estimates of at least a few days to a few weeks, and in some cases months. This is totally unacceptable. Especially when one considers that a wheelchair, for most users, plays the role of a vital organ, without which a person cannot function.
This wait is often rooted in the supply chain for any given chair’s respective parts. For chairs made by companies with a UK branch, and in instances that branch has in stock the required part, often the wait is as high as 1 working week. To put this in perspective, people struggle to be without their car for even 1 or 2 days; imagine the challenges to powered wheelchair users in being near-immobile for 5 days.
In the instance, again as is often the case, that a company’s UK branch does not keep the part in stock, it must be ordered from abroad implicating waits of a few weeks. This has been greatly exacerbated by leaving the European Union. However, the issue is all the more unacceptable when taken in the context of next day UK deliveries and relatively short delivery times from the rest of the EU. This lays bare the potential for strengthening the supply chain and slashing waiting periods.
A large portion of this delay is consequent to the existing profit model of the companies who provide chairs to the NHS. The chairs are initially purchased in bulk to make crucial savings for an NHS service under increasing strain. So, to increase their margins, the companies design the chairs with bespoke parts that are not interchangeable and then provide replacements at a high premium.
Without working to tackle these fundamental issues, we are wheeling in the opposite direction to every user having the right chair at the right time.
Shabaaz Mohammed, Board Member of Wheelchair Alliance
Shabaaz has shared his thoughts on a big issue. Other members of the Wheelchair Alliance Board agree that many people are experiencing significant and unacceptable problems with wheelchair repairs. We know there are many individuals working hard to ensure that repairs are sorted as quickly as possible and that a number of reasons may mean this doesn’t happen. However, wheelchairs are a vital piece of equipment enabling people to live the lives they choose.
Therefore the Wheelchair Alliance will
- undertake a simple survey to understand how long it is taking to get repairs done
- will seek to gather all important data to strengthen the call for change
- work with industry to identify what can be done to improve the situation and then push to get these changes in place across the country
- write a position statement defining minimum standards that all wheelchair users should expect when their wheelchair needs repairs or replacement parts
Our big challenge:
As you can see, we are committed to making a tangible difference for people who need a wheelchair as the right wheelchair can make a tangible difference to their lives. There are two ways you can help us please
- The National Advisory Board of Wheelchair Users needs to evolve from our current Wheelchair User Engagement Group. If you are part of a focus group, forum or a representative for wheelchair users please get in touch with us via the contact form on our website
- All our Board members are volunteers however to make a difference we need to pay for materials, our website and also some of the administration of our work. If your organisation would like to be a major sponsor, a partner become a member please get in touch. Membership is £495 per year – you can help build the voice of wheelchair users to a crescendo
Holiday season is coming – believe it or not!
As this newsletter is being developed it is cold, wet and windy outside and some people will love that weather. A bit of sun and warmth would be nice too. You may be thinking about having a holiday and we thought a few hints and tips might be interesting. We know there are more sites than the links below – you can drop us ideas we could pop onto our website via our contact pages!
The Rough Guide to Accessible Britain | Motability Scheme
Euan’s Guide – Disabled Access Reviews (euansguide.com)
6 travelling tips for wheelchair users | Fenetic Wellbeing
Air travel for disabled people | Disability charity Scope UK
