Over recent months I’ve had an increasing level of issues with my vehicle and transporting my chairs. In the last few weeks, perhaps a month or so, I’ve also started to get a lot of pain and numbness in my upper thighs, and to a lesser extent my buttocks and calves. This has caused me to question if I’ve got the right setup for what I need. This is compounded by the fact I am quite disappointed with the ID.Buzz that I bought and had adapted, and in fact I’m in dispute with the dealer/VW over potential misselling of the vehicle, but that’s a matter for the motoring ombudsman to consider.
Anyway, back to the point. With a year left before I can definitely get another vehicle with VAT relief, I thought I’d scan the market a bit. When I bought my various powerchairs and the vehicle it was all very much down to me doing my own research and assessing my own capabilities and needs. I’m the first to admit that I have a tendency to underplay the impact my condition has on me, and I am certainly not good at considering how I am on my worst days rather than just how I am on the day I’m researching/testing things. Whilst a couple of potential vehicles have caught my eye, before doing anything at all I called upon Copilot to give me a view. The eye-opening thing from the response was not about any vehicles, but the suggestion I speak to a disability diving assessment centre. I didn’t even know such places existed.
There is a local centre, South Coast DriveAbility, quite close to me and the person I spoke to was really helpful. She asked if I was already on the Motability scheme (I’m not) and whether they or someone else such as an occupational therapy team was referring. I said I was doing this off my own back, and she confirmed that I could self-refer and pay for an assessment. There is an 8-12 week wait for an appointment, and it’s £225. She then suggested that, whilst I could do the self-referral anyway as I wouldn’t pay until the appointment is booked, I should also talk to the Motability Foundation to see if they would cover the cost with a grant. I spoke to them – again very helpful – but they explained that their grants are for the cost of adaptations to vehicles (driving aids etc) rather than for the referral, but put me through to Motability Operations to get a MAC (Motability Assessment Centre) application completed and see if I met the criteria to be referred.
Once again, the person I spoke to at Motability Operations was really helpful. He explained about the MAC, asked about the level of PIP I receive, and confirmed that I could be referred. He wasn’t aware of South Coast DriveAbility, and suggested the application experience team could provide more help. It was close to closing time, and there was a queue on their line so I said I’d call back. He completed the MAC application – a very straightforward process, to the point it surprised me how little information he asked for – and said that would be sent to the assessment team, and I would hear back within 6 weeks. I spoke to the application experience team this morning – another very helpful person. She listened to me give her probably a bit too much of the back story 🙈 and then confirmed that the MAC was being sent to Driving Mobility for them to deal with at their local centre. That happens to be South Coast DriveAbility, unless they have a long waiting list and I can be seen somewhere not too far away but sooner.
So here I am, waiting on a call by November 11th (according to the Motability lady) to get a thorough assessment of my needs, aims, and a written report on what vehicle, with or without adaptations, I should be looking for. It will be very interesting to see what they suggest. As I’ve said, I tend to underplay my condition and thus my needs, so when they’ve spoken about things like needing to transfer internally or drive from my wheelchair, my immediate response was a firm no. When I think about it though, perhaps that’s an adaptation that would ensure continued comfort when driving, particularly if I get my chair properly adjusted to ensure I’m in the best seating position.
It sounds like I’ve been passed around to get to this position, but I can absolutely understand why different people got involved. The question it does leave me is why I wasn’t pointed in the direction of such services earlier in my journey. I suspect the answer is that my disability manifested itself over a period of time due to the spinal cord injury starting to affect me in different ways. There was no point in my medical journey when I was suddenly wheelchair bound for example. I’m definitely not trying to point the finger at anyone involved in my care over the years. I use Copilot to help me rewrite papers etc, write code snippets, analyse sets of papers to point me in the right direction on topics (when you get a planning application with 100+ documents of close to 1000 pages in total a few days before the meeting at which the application is to be reviewed, trust me it is very handy having an AI review to pick out the key topics to research further!). I’ve not had it review my medical notes, and don’t think I will, but for it to throw up a suggestion I talk to an organisation, the likes of which I didn’t know existed, that can help make sense of what I’m struggling with is one of the best things it has done for me.