Had a great day today.
This was the day of the meeting at the Kent and Canterbury Hospital to meet with the Chief Executive of the trust for the “In your Shoes”
We walked Louis and had a quick lunch then set off but like always we arrived early at the P&Ride and traveled on the hospital bus from there.
The letter told us to meet in the Hospital Restaurant so we went there and bought a coffee. It was very noisy as a Christmas party was going on. They were passing round a box of pressents with each person choosing one. Secret Santa –which was sweet.
Other people were arriving and I could see the same letter in their hands as I had received. It reminded me of the You Tube videos and expected someone to start singing one by one, what silly thoughts you have when you let you mind wander.
Whoops badly taken on the phone !!!!
Gradually the room emptied out and left just the people that were waiting to go to the meeting. We all suddenly were talking “Are you here for the Meeting ” “Yes are you” So funny.
Wendy and Moira came in and set my table as reserved so as everyone gathered we all started talking. A man with a guide dog was also in our group and he had a lovely dog. So obedient, so well trained.
We were all taken to the Boardroom where we were put with a person from the Trust. I and Ray were paired with the Human Resources Director of the Trust and a Lady member of the Trust.
I was rather pleased that they told us to go off to a side office by the Director where Ray was able to hear better as well.
We soon settled down and I had to tell my story of my coming into hospital to have my lung drained right through to no with my last scan. We made a list of good points on yellow post it. There were a lot of good points.
The whole treatment and the great nurses’s Macmillan and all they did to make sure I claimed the right things and saw a Solicitor. Everything that was good right down to the P&Ride so how easy it was to Park.
Then Peter took the bad list and wrote them on Orange post it’s. The way I was told in a Cupboard i had only 3 months to live, Appointments for the oncology first and then try to make the scan appointment work in when they should be issued together. The wait for results to long, Nurses and Radiographers not even knowing what mesothelioma was, so not reading notes to find out what was wrong with me.
The list grew very long as Ray had a few like carers not being spoken to.
We told them everything and I added in things that other warriors have found wrong in other hospitals although that wasn’t abut our hospital they listened.
I bought up about not enough trials and how we have to wait here in the UK for trials to be passed in the USA first.
everything was listed.
When the time was up we met with another group and the post its were put up on two sheets –one for good and one for bad and under headings. The longest list of bad was under Patient Understanding and one of the partial sighted man was that we worry about Interpreters when a person cat speak but fail to help with assistants to see, he said if only there was one person that understood what a blind person needs, he cant see faces and only just make out edges to a bedside cabinet and people just put things anywhere. he said that a person that had a knife and fork given to him with a diner–the man had a broken arm in a sling. He had to go and cut it up for him an he couldn’t really see it. So its attention to detail that is lacking.
We put all our comments together so that we hadn’t duplicated and all met up again as a whole group in the Boardroom again where we went through the whole of the post its and really we had raised very similar points.
We were told that a report is to be typed up and sent to everyone and so the points will be listened to and be used. They have had some so far that are being put into action and now ours will be added.
Our hands were shook and lots of well done and best wishes as by now everyone knew of the plight of a Mesowarrior that we have no cure and only Palliative care one that we find unacceptable.
I really feel I have educated the Managers of the Trust.
Ha ha !!! Ray has been playing around –Mavis with a pearl earring.
Rays Blog http://mesoandme.wordpress.com/2012/12/19/wednesday-24/