I missed my hospital appointment 4 weeks ago because I forgot about it. It always falls a couple of months apart and it is difficult for me to remember.
When I get a letter from the hospital, I keep it safe in my cupboard but sometimes I forget about it.
I feel angry and upset when I forget my hospital appointments. It really frustrates me a lot.
I had been talking to hospital reception for two and a half years, asking them to make the appointment letter accessible, such as sending the letters on green paper.
They told me ‘no’ many times and it got me very angry because it felt like they never listened to me. I know what works for me as I am an expert on making information accessible.
The receptionist told me, "We haven't got the time and money to make the letter accessible and use green paper".
She told me that if I miss my appointment again I might not get another appointment for months.
I asked her, "Can you send me a reminder text message a couple of days before my appointment?" and again she told me ‘no’.
I felt like giving up. I was getting very down with it.
I looked online how to put a complaint in about my experience at the hospital.
I found some information which was hard to understand. I looked online for 3 hours about this.
In the end, I called the NHS Help Line.
It can be hard to find the right support number. It took me over an hour to find it but I got it in the end. I talked to the Complaints receptionist and I told him I was not being listened to.
Then I talked about my issues and he really listened to me and I felt better about myself.
Then a woman called me back to talk about what happened and why I wanted to put a complaint in. She really listened to me. I felt better about it all, getting the issues off my mind.
The next day in the morning, I got another phone call from the same woman and she told me: "We are going to send you a reminder letter and reminder texts from now on".
It made me happy and more confident in myself because I didn't give up.
My tip for people with learning disabilities is:
Don't get yourself down and have the confidence. Believe in yourself and you can become a role model for other people with learning disabilities.
These are some useful contacts if you wish to make a complaint to NHS England:
0300 311 22 33
england.contactus@nhs.net