Haven’t we forgotten somebody?

This post is also available in: Nederlands (Dutch)

To start a somewhat longer blog, which is needed to create clarity. I hope you, as a reader, have some patience with me.

Lost

Let me start with my own experience, during a group holiday in England. A nice trek through central England and Wales in, I mean, 1971. In preparation for the last evening we stopped in a city to do shopping. The coach was parked and the tasks were divided. I was sent out, along with a blind, very independent, young man to go and get pork chops for everybody for the barbecue. No sooner said than done. Cheerful down the side street and into the shopping street, looking for a butcher. Meanwhile busy with directions for my blind fellow traveler to avoid obstacles. We found a butcher and bought, for the whole group, pork chops. A pretty heavy plastic bag over my one shoulder, and to my left my fellow traveler. Back to the bus.
But what side street was it in again? One side street after another but no coach. The bag with chops became heavier and the panic struck. Was I too far? Did I miss a side street?
The moment you need them, no Bobby to find, of course. Despite my stoic kind company (he had every confidence in a happy ending) I have never felt so alone in my life.
All went well, a few people from the group went looking and found us, otherwise I would still have lived in England today…

Systems and people

I’ve had that feeling of being lost, not really being seen, even once while arranging help and resources for our zEMB foster son. That was 35 years ago, easier and faster than now. The time between (replacement) application and final delivery increased from a few months 35 years ago, to more than three years with his last wheelchair. The bureaucracy, despite a well-written set of requirements of three A4’s, start with a standard wheelchair offer. The time passing between fitting and delivery on trial. Without consultation a wrong adjustment to the orthosis. We had specifically, wise by experience, asked in the requirements package to consult with us if something was not clear. Unfortunately! The orthosis had to be made all over again.
It wasn’t the people who came at home. Full of attention, but apparently there is something in the system that makes it not work, or very slowly. I’m not the only one who’s going through that: Fight for a wheelchair for real . The market is decisive. The market doesn’t have any morals. People do.
The contracts between clients (municipalities and health insurers) and companies are paramount. More and more you get the feeling that you are alone. Not sufficiently seen by the large aids companies and also not by manufacturers. Manufacturers who view any adjustment to their standard product with suspicion, especially if it is an adjustment they have not thought of. A welcome exception are the (smaller) specialist (fitting) companies for custom made aids.

We do see you?

Parents of zEVMB children experience this too. So many agencies to negotiate with, that it comes at the expense of your child’s attention and care. Fortunately for them, there are co-pilots now who tackle the bureaucracy and stand next to you to get the right things sorted out. See On the way from survival to life.
One of the problems faced by the co-pilots is the arrangement of transport to and from day care for zEVMB children. See also the talk plate “Appropriate and safe transport” in the above report. These often small-scale day care centres conclude contracts with transport operators, but that is not their core task at all. Safe transport a decent cost, from the carrier’s point of view understandable.
There are quite a few children with individually customized wheelchairs. According to the Code VVR SFM, wheelchairs serve as a seat in transport, all have to comply with the (ISO 7176-19) crash test standard. Individual transport as an exception for a custom made wheelchair (you can’t crash it)! Then clearly the financial consequences and the parents of zEVMB children are not in the picture.
Haven’t we forgotten somebody?

High spinal cord lesion

Other groups of wheelchair users are also not in view of the authors of the Code VVR SFM. For example, people with high spinal cord injury. They are dependent on an ergonomically well-fitted custom made wheelchair. Kees van Breukelen, building on the work of Harrie Staarink, wrote articles in the Dutch journal for occupational therapy about the ergonomic seating . A mountain of research results is available on the ergonomics of a wheelchair. Think also of the work of the Department of Human Movement Sciences of the VU University.
People with high spinal cord lesions can’t get out of their way with a Code VVR requirement for a high wheelchair backrest. That backrest is in the way of an ergonomic stable seating and thus good possibilities to power the hoops of the wheelchair.
Would those custom wheelchairs be strong enough? There is even a crash tested one (in accordance with ISO 7176-19) active wheelchair available!
Almost from the beginning, occupational therapists and rehabilitation specialists have not been included in the decision-making process when the Code VVR is drawn up. They are the most important ones who advise on the provision of wheelchairs and know which ergonomic requirements are strictly necessary! That repays now.
What is important, dear manufacturers, tailoring companies and manufacturers of tailor-made wheelchairs, occupational therapists, taxi companies and government, communicate: talk to each other, in the interest of the wheelchair user who is entitled to a well-fitting wheelchair. That prevents a lot of misery and is also more advantageous, because a good solution can be offered in one go.
Haven’t we forgotten someone very much, in the urge to survive or make a profit as a company?

Pareto 20 80 rule

What doesn’t help here is the Pareto 20 80 rule. With 20% of the effort reach 80% of the solution. And the rest you leave to someone else… That seems nice, but not when it comes to people.
Let’s say for a moment that an 1st emergency (ER) would work according to that principle, rather than with the current triage. The greatest number of cases, which you can help with the least effort, first? And if you have time and resources left, the difficult cases? Get the Picture? The world would be too small.
Don’t get me wrong. If a passenger, reliant on the wheelchair as a seat, can use a type of wheelchair that has complied with the crash test, without significantly sacrificing ergonomics, then that is a good thing. With all standard crashed wheelchairs, that 80% of the solution for all wheelchair users is still far from being achieved. Adaptations will always be necessary. Do not make these impossible by a rigid attitude as a manufacturer, in terms of liability. The Medical Device Regulation (MDR) the interests of the wheelchair user as a citizen with regard to an appropriate wheelchair are not sufficiently in the picture.
Haven’t we forgotten somebody?

According to the Code VVR SFM:
“The code has been updated to the current state of insights and laws and regulations. The code has also become considerably less extensive, which has improved readability and comprehensibility.”

With this shortening and the hard requirement that only wheelchairs that pass the crash test are allowed to serve as a seat, the child has also disappeared with the bath water. There are enough custom made wheelchairs, which are strong enough for safe transport without crash test. Perhaps harder to demonstrate. But if the supplier has sufficiently substantiated the strength, he has every right to stick musketon labels, in places where the fastening system must be attached to the wheelchair. And passengers can just go on the wheelchair taxi bus!
I get ahead of the discussion in Germany and the Tüv’s proposal. For this, see the Pièce de Résistance of the Code VVR.

For a presentation on risks and safety, see Risk and risk analysis when choosing a wheelchair.

I’m going to make myself strong for the remaining 20% (in reality there are a lot more!) and that’s going to cost me the necessary effort (80%?). A bit like the gleaning on the image of this website. On the basis of literature, and examples from other countries in the world, I want to resume my old work as a scientific researcher. The current code VVR is too restrictive and deserves better. Sociaal Fonds Mobiliteit in the Netherlands is also, as far as I know, the only one in the world with this very restrictive Code. What is worse is that more frequent risks are not adequately addressed in the current taxi market.

The results of my literature study and findings will be found regularly on this blog.

Linked to

Custom work

Pièce de Résistance of the Code VVR

Risk and risk analysis when choosing a wheelchair.

References

Breukelen, Kees van. “De ergonomische zit deel 2.” Tijdschrift voor ergotherapie, 2010, p. 20, https://dwarslaesie.nl/wp-content/uploads/2016/09/De-ergonomische-zit-Kees-van-Breukelen.pdf.
Wij zien je wel. Onderweg van overleven naar leven. Eindrapport en aanbevelingen werkgroep Wij zien je Wel. maart 2020, https://www.wijzienjewel.nl/producten/rapport-onderweg-van-overleven-naar-leven.
EU. REGULATION (EU) 2017/745 OF THE EUROPEAN PARLIAMENT AND OF THE COUNCIL on  Medical Devices. 5 Apr. 2017, https://eur-lex.europa.eu/legal-content/EN/TXT/PDF/?uri=CELEX:32017R0745.
Wikipedia. Pareto Principe, de 80 20 Regel. 6 June 2020, https://nl.wikipedia.org/wiki/Pareto-principe.
ISO. ISO 7176-19:2008 + A1:2015. Wheelchairs-Wheeled Mobility Devices for Use as Seats in Motorvehicles. ISO, 2008.
Stoové, Ralph. “Strijd om een rolstoel voor het echie - #RegelHet - over hulpmiddelen.” RaGaSto, 28 Oct. 2019, https://ragasto.nl/strijd-om-een-rolstoel-voor-het-echie/.

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