Wednesday 14 January 2009

Jane replies to Florence

Florence, I've contacted Carole about whether we can put such frank views up on the website, and her view is that of course we can. This is what she says:

"It's perfectly alright to put this up on the blog as it is. We have done the same with our [Craig-y-Nos] participants. It is, after all, Florence's experience and how she feels about it. That is historically acceptable and ethical. One of our ex-patients has written about being sexually abused by a ward sister whom she names and this is on the blog. The ward sister is still alive. One of our community workers - an ex-nurse herself, has attempted to make contact with her but without response so far. She hasn't sued us anyway! I wouldn't anonymise anything on a blog because the function of a blog such as yours and ours is to give a voice to the previously anonymous and to open up dialogue between others with similar experiences."

This is really helpful, and is what I personally think should happen. It also makes clear that none of us feel be inhibited about writing as we feel.

Florence Gill feels she suffered from surgeons' disagreeing diagnoses

Happy New Year! Let's hope it brings many new correspondents to the blog. The Wellcome Trust Foundation brochure Highlights is now out, which might bring in new people.

Here's the first posting of the year. Florence actually wrote towards the end of November, so I apologise for delay in posting her very interesting message. It became part of an interesting correspondence with Carole Reeves, so I decided to save it up and post the whole sequence.Here's part one!

"It’s some time since I last wrote to you about the Marguerite Hepton Hospital. I have written quite a lot in the rough and have been rewriting it to make it more legible. It takes me some time as my hand goes into cramps.

Cynthia says you were particularly interested in how you cope as a lame person and how you feel about one’s appearance. In hospital it didn’t enter my head as we only had mirrors for the head and shoulders. In the outside world you soon begin to know what it feels like to be different. Not school because most of us were in the same boat, but in the street and going out to work. Being made fun of, some copying your walk. People making remarks in your hearing as though we are deaf or unfeeling or a freak.

I didn’t take it lying down, if I could give them a slap I did, and I also developed quite a nasty bitter tongue and used it. I think I was rather an unhappy teenager. One boy used to follow me home and make fun of me. I did cry sometimes, but in a rage. I notice now when I am in a wheelchair people don’t look at you, it’s as if they don’t want to see you. I feel mad and angry even now as there was no need for the operation as I later found out.

When I recovered from the rheumatic fever I was put under Mr Broomhead and Mr Pain. Mr Pain told my parents to take me home to rest but Mr Broomhead had me put on the Thomas frame and sent to Thorpe Arch. He then told my parents if I had this hip fusion then I could go home sooner. No mention was made of the fact that this op would cripple one and cause damage to the lower spine, but he knew it would because when he asked his students what would be the outcome if the op went ahead one student said spinal damage. The doctors discussed this round my bed and I heard it. They think children don’t understand but I did.

I’ve already said we went to the LGI for operations at that time, and Mr Broomhead was ill, so nothing happened for a while, and then they sent me down to theatre and Mr Pain was operating and when he came out to see who was next he came to me and looked at my case notes, threw them down on my trolley and told the nurse I didn’t need an operation and to send me home. I would just like to say when he came out his apron was all bloody.

Much later, Mr Broomhead came back and I went down to theatre again. Two nurses came with the mask they put over my nose and began pouring the ether on and telling me to count to a hundred. I thought if I held my breath it wouldn’t work so I did, but I took the off my nose and threw it across the room. I fought, kicked and struggled but went down fighting until I knew no more.

The ending to this part of the story came with the forming of the NHS. I’ve more or less been having check-ups at the LGI since I was fourteen, and I saw a new specialist and he told me these hip operations were no longer needed and should not have been done in the first place. I was enraged and up to a point still am.

One other thing that makes a different to one on arrival home after five years was how one’s sisters and brothers react to you. When I got taken away I had two sisters and a brother, and one born while I was away. They were never allowed to visit so they didn’t really know me and for many years I felt an outsider apart from my brother; he was only eight on my homecoming but he was very welcoming.

There were quite a few private patients and they never seemed to have operations so I have to think we were guinea-pigs. My close friend Hetty Bryan felt the same way to me. We were in touch occasionally until her death some time ago.

I’m not too sure about this article being put on the computer. What do you think? Have you had anyone saying anything similar?