The image above isn't pleasant. Living with motor neurone disease (MND) isn't either, but after 14 years I am used to my condition. I no longer feel disabled, I work voluntarily for two charities and I know that I work well. I have been bringing up two children on my own since 2003 and they are now kind, thoughtful teenagers. I'm an empowered patient and manage my condition very well, with the help of my hospice doctor. MND forced me to become an employer and I manage a payroll for five carers. Coordinating care isn't always easy but I do it because I want to choose who works with me. I run my home alone, pay bills and have bank accounts like everyone else. I use Tobii eyegaze technology to do most things online and I love being independent.
I'm not saying all of the above to blow my own trumpet or to boast. I'm saying it because, every now and then, a situation occurs that makes me feel like the woman in the photo. Yesterday was one such occasion.
I opened a letter on Thursday evening from the HMRC about my tax credits. The letter said that they suspect that I'm living with a partner but that I've claimed tax credits as a single person. They asked me to send them a stack of original documents within two weeks. I knew that I had to phone them and from past experience, knew that this would be a problem. Increasingly, we are expected to listen to computerised voices when we call government departments and big organisations nowadays. The problem is that the staff at these places are not prepared to speak to someone using a computer as their voice.
My voice is unintelligible to most people. I've accepted it. I have eyegaze computers with wonderful, loud, clear voices and I love using them. The woman at the HMRC spoke to my son first, who explained that I could talk to her with my computer. She didn't say OK and continued to ask him security questions. She found out that their letter was sent to me by mistake. Before hanging up she advised me to appoint someone to speak to them in future. I told her with my computer voice 'I do everything myself'.
Last year I tried to transfer a balance from one credit card to another. There was something wrong with the online banking system so I had to go to my local branch. The staff know me well and phoned the credit card section. No one there would do the transaction because I couldn't speak to them on the phone. Six months later I received a letter saying that my credit card won't be renewed.
Every year the DWP ask me to send my bank statements in. I sent them twice and finally by recorded delivery because they kept requesting them. I had the tracking number and my carer phoned to give it to them. They wouldn't speak to her and aggressively told her that I must appoint someone, not only to speak on my behalf but to receive my income support. How can I pay my bills if someone else receives my money? They sent an appointee form but I threw it away, hoping that when I have to phone them again I'll get a more compassionate person...
Perfect Sarah x I looked into putting a appointee in my place when I can't communicate. I thought this was a very responsible to do. However it would cost just under £1000 to do this via a solicitor. How do I afford that on DLA income? So no I am not able to do this.
ReplyDeleteIf it's what you want then you shouldn't have to pay. The HMRC said that I just had to fill in one of their forms, same with the DWP. I don't think that being unable to speak should mean that you instantly become helpless - I'm more capable then some able bodied people!
DeleteThank you for sharing! You're amazing! I remember speaking on my father's behalf for the first time. I just broke down when I said, "I'm his daughter. He can't speak. He has ALS." They wouldn't talk to me. I had my husband call back and pretend he was my dad. They spoke to him. You're an inspiration!
DeleteHi Karen, I confess to letting people pretend that they are me in the past, because it's just easier. I'm not going to do it anymore, I want to see how far I can get with my computer. The challenge is on!
DeleteI juat read your article.
ReplyDeleteI have tears running down my cheeks. They are tears of frustration.
I juat read your article.
ReplyDeleteI have tears running down my cheeks. They are tears of frustration.
Sarah, thank you for sharing your story! You're determination is inspiring! I find it challenging managing my father's care and I'm relatively healthy. I remember speaking on my father's behalf for the first time. "I'm his daughter. He can't speak. He has ALS." They wouldn't speak to me. I broke down. I had my husband call back and pretend to be my father. Sad. I wish my father had just a bit of your courage.
ReplyDeleteThis comment has been removed by a blog administrator.
ReplyDeleteSame problems here even though my wife speaks for me.
ReplyDeleteAs somebody with wide experience of HMRC and their failing processes and systems I suggest you bypass the call centre staff altogether and complain to the Chief Exec, copying your letter to the Director of Personal Tax and your MP.
ReplyDeleteChief Exex: Lin Homer, HMRC, 100 Parliament St, London,
Director of Personal Tax: Ruth Owen, HMRC, 100 Parliament Street, London
It's amazing how quickly they sprang into action when I did this for my mother who had had weeks of error and bad attitude. But you MUST copy to your MP for them to really jump.
Good luck!