My earlier reflections on difficult times left me somewhat demoralised having been accused of not doing any work and being peer reviewed and ending up providing consultant support for the newly funded Electric Powered Indoor-outdoor Powered Wheelchair service (EPIOC).
I sat in the clinic on my first day rather unconfidently but with the support of a wheelchair therapist and an engineer – who clearly knew their stuff. I soon clearly understood why my colleague had difficulties listening to parents who had every right to be fed up with their previous provision. I often listened to a litany of problems e.g. the brakes don’t work and the footrests keep dropping off – and we can’t get the chair into the car easily…..
However, previous experience had taught me that listening carefully and promising to tackle all the points raised soon calmed down the atmosphere and enabled the team to investigate the 24-hour day experienced by the wheelchair user (hereafter referred to as the ‘user’) and the parent/partner/carer etc. This facilitated the provision of an EPIOC which had the best chance of meeting the needs identified.
After a few clinics I began to get more interested in the service and asked one time of the engineer: How much did that EPIOC cost? (it was the basic chair and not one of the expensive ones.)
He replied: the EPIOC itself about £1600 and the cushion (probably a pressure-relieving cushion) about £400 – making a total of £2000 (in 1997) for the prescription
I commented that that was very interesting because I thought that that sum would pay for a hip replacement.
He asked: so what?
I said that if a Director of Commissioning services had only £2000 to spare, why would he spend it on an EPIOC when a hip replacement provided the best improvement in the quality of life of any procedure in the NHS?
This was clearly new thinking and led on to a discussion within the team as to how we might show that we were providing a good service. My initial thinking was that we should ask users in a telephone interview what they felt about various aspects of the service they received – from the earliest contact with the administrative team to the day they took possession of their new chair – usually about 3 months after clinic assessment
The therapists’ said: if we are asking them systematic questions, why don’t we ask them whether they are experiencing pain or discomfort whilst sitting in their chair; or any problems in using or controlling their chair.
Then the engineers said: we should know whether the user is having any difficulty charging the battery, caring for or using their chair and whether there had been any faults with the chair?
By this time we were all worked up about the kind of information that we really should be trying to collect so questions were added about their use of the chair indoors and outdoors, whether they lived by themselves, whether the EPIOC had improved the lives of their loved ones, whether they climbed kerbs or not, whether they put the EPIOC in a vehicle and if so whether they dismantled the chair to do so etc. As a result of this information, we predicted that we could estimate whether they needed an early review or other actions were needed.
All this resulted in an 8-page questionnaire which was designed for easy computer input and completed in lunch breaks or when the ambulances delivered the users’ late for their appointments.
I didn’t really have any expectations of this project, and was surprised to be awarded a bottle of wine after an early presentation to colleagues about the 5 (20%) users who had had an accident, some having fallen out of their EPIOC within the average 4-month follow up period. We soon found out that some users were not using their chair – sometimes because we had promised them a part which we had never provided, and other times perhaps because of deterioration in their health etc.
Our preliminary results were published showing good levels of satisfaction with the EPIOC team’s service but not for the waiting times which reflected funding issues. We found serious concerns about one of the contractor’s service provision; and the audit influenced the award of the contract for this provision for the second and subsequent years. In addition, the audit confirmed that many users had become more independent and that the EPIOC had eased the lives of partners. Alarmingly though, 44% of users had experienced electrical/mechanical faults with their chairs1. This work was subsequently written up for an international journal and remains one of the few studies that report how many users actually use their NHS-provided equipment 2.
Firstly it would appear that I brought to the team two transferable skills that were important to the team but which I would never have considered putting on my CV – those of listening to the users of the service and asking simple questions that could be simply answered about the service we provided.
Secondly, the team meeting provided a great way of sharing our inquisitiveness about the service we provided. The answers to our simple questionnaire not only provided data for the purchaser of our service that we were running a ‘user-friendly ship’, but also that EPIOC provision not only transformed the lives of its users, but also of their partners/families.
I am happy to discuss any of the issues raised in these reflections with colleagues who can email me at ‘firstname.lastname@example.org’ and head the email VRA – professional reflections.
Trustee and Past-Chair, VRA.
(1) Ward JH. The set-up and audit of a regional EPIOC service. Posture and Mobility 1998; 9(Spring):5-11. https://www.pmguk.co.uk/data/page_files/journals2/Newsletter%20Vol%2009.pdf
(2) Frank AO, Ward JH, Orwell NJ, McCullagh C, Belcher M. Introduction of the new NHS Electric Powered Indoor/outdoor Chair (EPIOC) service: benefits, risks and implications for prescribers. Clin Rehabil 2000; 14(December):665-673.