"Wording and quality of information leaflet"

After a routine breast screening mammogram, my Mum received a letter two weeks later, to say that she needed to attend the Linda McCartney Centre for further tests, with an appointment for 3 days later. This was obviously a very worrying time for us as a family.

The letter that came also contained an information leaflet and a site map of the Royal Hospital. Mum's eyesight isn't the best, however; mine is fine, and even I could not read the map that was included. Luckily, I know the Royal quite well, but for someone who may not have been before, that map would have been absolutely no help. The original map had been photocopied that many times, that none of the writing was legible. The leaflet had been printed on one side only, meaning what should have been 2 sides of A4, ended up using extra paper, which just seems like an absolute waste, considering how many of these must be sent out.

A big problem was the language in the leaflet, which stated that patients are not allowed to have anybody with them in the clinical areas, and anyone other than the patient must wait outside in the main waiting room, leaving the patient to sit on their own, waiting to be tested for cancer. My mum is very disabled, and could not be left on her own in a waiting room, as she couldn't carry a bag, get herself changed, go to the toilet, open a bottle of water or even recall the information she is told. Therefore; I called the unit to explain this, and ask that an exception be made due to Mum's needs. When I called, the person who answered seemed bewildered and a little peeved by the fact that i'd called, despite the fact that the leaflet gave their number for any questions. I explained I had some questions, and was told they were too busy (10am) and someone would call me back later.

A short time later, I was called back by a radiographer, who was very helpful. I explained Mum's needs and that I am her daughter and carer, and she was surprised that we were so worried, and said that this wasn't a problem at all, they just 'don't want men sitting in the clinical areas, as women would be in hospital gowns and it was to protect their dignity'. I do wonder what would happen if it was a man needing further tests here, as obviously, men can still get breast cancer? While I am thankful for them prioritisting patient dignity; the wording of the leaflet made Mum believe she would have to be alone with no help, and this caused such massive upset and anxiety, that she was considering not going for these further tests. I strongly believe the wording (and general quality) of this leaflet needs to be reconsidered - perhaps just to say, 'to discuss individual needs and circumstances, please call the department' - the wording in the leaflet made this seem very final and not up for discussion. It nearly caused my Mum to cancel this very important appointment, when actually, this was without reason, as me attending with her was not an issue. A lot of anxiety, upset and worry could have been avoided, by a slight adjustment of the leaflets wording.

Posted by Healthwatch Liverpool, on behalf of patient's daughter and carer.