My name is Ray, I am 59, and I am a member of Patient Voices Matter (PVM). I joined PVM because I want to improve the health system for everyone by talking about my experiences; I have high blood pressure and learning disabilities. We meet every month and I really enjoy it.

Learning disabilities

I think that some members of staff in medical settings do not listen to or communicate well with people with learning disabilities and patients with other needs, too.

An example of this happened last year when I went to the hospital reception desk to ask where to go for my scan. The receptionist was rude to me because she didn't understand me because she thought I wasn’t expressing myself clearly, and it made me feel small. I felt like I was banging my head against a brick wall, and it is frustrating that patients’ voices are not being listened to.

I also had a bad experience when I had a biopsy in November. I received a letter that was inaccessible and so had to ask someone to explain to me what it meant. Then when I went to the hospital I had to wait four hours and no-one would tell me anything.


After my biopsy I was hungry as it was 7pm and I had been waiting all that time, but the canteen was closed and I didn’t know how to get any dinner. How are patients meant to know what time canteens close and how to get food? The kitchen staff kindly made me some soup, but what happens to other patients in this situation? Most of the staff were really great, which I was thankful for, but one member of staff kept asking me the same questions, which really frustrated me. Why couldn’t he listen the first time when he asked me?

Better communication

These experiences have taught me that what I want to see from the NHS is:

  • Accessible letters to patients
  • Better communication from staff
  • Food to be available at all hours
  • More staff to listen to and really care about patients.