I’ve just had a day of great meetings about really exciting projects and coming events. They’ve been in incredible places across London, including Tate Modern, the Wellcome Trust and Battersea Arts Centre. But I’m not going to discuss any of these.

Instead, what I’m going to write about, what I need to write about, is the conversation I had on the way to Tate Modern this morning that left me in floods of tears.

Yesterday’s mail brought three returned Access to Work (AtW) support worker claims forms. Access to Work is the national scheme that provides working disabled people with the practical support they need to do their jobs. For me, they cover the cost of my support worker and the additional travel costs I incur because I’m a wheelchair user.

In the generic letter that accompanied the claim forms there was a tick in the ‘Funding has ended’ box.
For the last six years Touretteshero’s largely been run from the castle, but in August we moved in to Battersea Arts Centre (BAC) who have kindly given us desk space in their new office.

Because this now means I have to travel to and from BAC rather than working from at the castle, I submitted a change of circumstances application to AtW. This was granted, but the additional costs meant that my support hit the level for the cap. So, rather than covering all my support, I’ll get the maximum amount of funding available under the capped system and have to decide what to do about the rest. This change started in August and a few weeks ago I submitted the first round of claims under this new arrangement.

With back-to-back meetings all day I knew my only opportunity to speak to AtW about the returned forms was in the cab. So I took a deep breath and made the call.

Up until two years ago I had a named AtW advisor who I could call if there was an issue and who’d always get back to me. They had a good understanding of me, the nature of my work, and my support requirements. Now all contact with AtW is managed through a call centre where the operators only have access to information displayed on their computer system.

I got through to an operator in Exeter. I explained the situation and he took my details and looked me up on the system. After several minutes he said, ‘All your support ended as of 14th August.’

I told him I knew this wasn’t the case, and that I’d had an email confirming my support would carry on under the capped system.

He said he couldn’t see it on his screen and therefore my claims would not be processed.

With mounting desperation I offered to look up the email on my phone so I could give him more information. He told me it wouldn’t make any difference because his computer said my support had ended. If I needed more support I’d have to reapply.

I burst into tears. Not a quiet trickle – desperate, anxious sobs.

“I’m in a cab on the way to a work, with my support worker sitting at next to me and in one breath you’re telling me my support’s ended.” I managed to say. “You’re talking about my life, my job and my financial independence. Why is this always so hard? Every time something changes it’s never straightforward”.

Faced with my tears the operator looked again and read some of my case notes out loud. After a few minutes more he found the letter confirming that my support would continue until April, and then arranged for the payments team to give me an urgent call back to discuss the issue. An hour later I spoke to someone and we were able to establish what’d gone wrong, and put it right.

This could all have been avoided if a simple note had been put on the system and if the operator had delivered what was potentially devastating news in a more thoughtful way.

Tonight it’s this interaction that I’m thinking about. It’s not because I’m worried about my support because I know on this occasion it’ll all get sorted. It’s because of how vulnerable it makes my career feel. Without the right support the opportunities open to me would be significantly restricted. It makes me realise all over again how dependent I am on the decisions of others.

Someone on the end of a phone can say, ‘It’s ended’ and my work and quality of life can shrink in an instant.

I’m confident, articulate and well informed, yet I have to steel myself for every conversation with AtW. Six years ago I wasn’t as confident, I didn’t know my rights, and if the system was like it is now I doubt I’d have pushed for support at all. So what does this mean for younger disabled people, or for people of any age whose bodies or minds are changing?

As I lie in bed with the stress of the day seeping away and the lamp-post visible out of the corner of my eye, I’m wondering how many other similar conversations the operator in Exeter had today. How many people cried? How many people felt their world shrink? How many people gave up asking for support because it was so hard to access?

If you’re an AtW operator reading this, please understand that I value the work that you do, but please also take every opportunity you can to make the system work better for disabled people. Remember, if you’re telling someone they won’t receive support it’s likely that you’re effectively giving them the sack, so please make sure you’ve got all the facts straight first to avoid unnecessary distress.

I love my job and I love AtW for enabling me to do it. But I’m deeply worried by the changes over the last few years and about what this means for individuals, equality, and our inclusive workplaces.