You Cannot Be Serious

Advice to anyone making policy affecting terminally ill people: Keep it simple, offer services rather than wait to be asked, understand individual circumstances.

We received a letter one month ago saying that our Motability vehicle was to be taken away. I was shocked, because the only way I can leave the care home where I live is in my vehicle. I couldn’t believe that this was going to happen. Initially, we were told that the van would be taken away on February 16th, and we then received an extension to March the 8th.

I have the vehicle on a five year lease under the Motability scheme. I raised the £10,000 deposit through crowdfunding in 2015, and have consistently used the van since delivery in January 2016. Leases on the Motability scheme are funded by the mobility part of the UK Personal Independence Payment benefit. It turns out that you are not eligible to receive mobility payments under the PIP benefit if you live in a care home and have NHS continuing healthcare funding. We have learned that the cost of the Motability vehicle should be paid by the local NHS Clinical Commissioning Group, if it agrees to do so. If you live at home, you continue to receive the PIP and vehicle.

After about half an hour of panic, and after Jane had made many calls to the Department of Work & Pensions and Motability, I wrote to some friends for advice. I also wrote to the Minister for Disabled People. Woody and Sarah started a petition and we used Twitter.

The response to the petition, 40,000 signatures, and the amount of social media activity, showed us that people agreed it was ridiculous and unfair to take away the van.
The story also received national press coverage, and Woody was interviewed on Three Counties Radio.

On February 19th, Motability told us that we can keep the van until further notice, under their hospitalisation provisions. They also requested that we keep them updated on our discussions with the DWP. I received a detailed response from the Minister, which explains the current rules. I see several inconsistencies which I am following up. The following two articles were published after I had been told that I could keep the van.

I am continuing to work on this, because I don’t think that the current system is workable and that it would be more simple and logical if people in my situation were entitled to the mobility part of PIP. I believe in a collaborative approach, and am looking forward to working on this with government. I am slightly confused why Motability didn’t invoke the hospitalisation provisions before telling me that they were going to take away the van.

There is no way I would have got the decision reversed without the petition and media coverage. I am lucky enough to know many people who helped me. Sadly, that’s not the case for many people, and I fear that they lose out. The system needs to be fair and reasonable for everyone.

Thanks for your support. To be clear, I haven’t finished.

Andrew with Marta, who enables him to go out


Author: Andrew Knowlman

I am a 50-year old father of two children, married to Jane. I live in Hertfordshire, UK. I was diagnosed with Amyotrophic Lateral Sclerosis in April 2015.

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