Kathy's perspective

“I remember Wayne coming in from work that day last summer and just saying ‘I can’t do it anymore.’ His body was telling him he was done.

It was so hard for him after 38 years in the job. It was his life, and his colleagues were like family. But his health is more important than wealth, which is what we told his employers.

Until the PH, Wayne had never had any time off – and after he was diagnosed, he wanted to go to work and remain ‘normal’. He didn’t want anything to change, but it had to.

During the hot summer of 2022, he was doing his shift, coming home, and that was it. He was done in. He couldn’t eat and couldn’t even visit our grandkids. It was impacting everything, and it was very difficult.

We spoke to one of the nurses at Wayne’s specialist centre and she advised us to think hard about work/ life balance. But it was still difficult to let go and make a final decision.

We did have to talk about things a lot. He’s only 58, and he’s not going to get his state pension until he’s 66. Ill health retirement has left Wayne with less than half of what he was bringing home each month when he was working.

I was made redundant last year and because I had my redundancy pay, we didn’t feel as financially exposed. But without that, goodness knows what we would have done.

Wayne needs some time to process everything now, and we need to think about what we’re going to do as a family. I’m looking for a new job, and we’re looking into what benefits we may be entitled to.

It’s all so new to us, but we are where we are. We’ve turned a page, and we now have to think about where we go from here. We just need to start a new chapter and look positively towards the future.”

If you’re struggling to work with PH, please speak to your specialist team for advice.

We also recommend you discuss all your options with your employer, and research what benefits you may be entitled to. This will help you make an informed decision about your future.

Scope, who strive for equality for disabled people, have a dedicated helpline offering advice about issues including employment. You can call 0808 800 3333 or email helpline@scope.org.uk

You’ll find more personal experiences of leaving work due to PH at www.bit.ly/WorkAndPH

We understand that you may be facing difficult decisions. You’re not on your own!