So... As you all know, we were asked to attend a meeting at Northwick Park regarding concerns at the hospital. The people who attended were The head of nursing, Carol, The matron of the ward, Vicky, The Haematology Consultant, Michelle, The CNS (clinical nurse specialist) from Palliative care at Great Ormond Street Hospital, June, The Doctor from Palliative Care at GOSH, Mike, The lady from PALS, Tamina, a family friend, Janine, My mother, my sister and I. Carol started off by saying we only had an hour and a half. Everyone introduced themselves and then Carol asked what my concerns were. She called the meeting and decided to run it in individual sections. I cannot exactly remember the order of it however we discussed a few things. For the first half of the meeting I very much felt like I was being cornered and quite rushed to say what I thought. By what I thought was important... it is quite hard to have a lot of people waiting solely for you. I didn’t expect to be put on the spot like that. I tried to say about how I felt about the way I am greeted... or more so, not greeted by members of staff. I did get my words a bit tangled, even though I had written down points. I didn’t really feel like I was being asked clear questions. I tried to put forward that I felt like I was not spoken to and that I was often just spoken to when absolutely necessary, I tried to explain that there were some nice nurses who behaved civilized such as lovely Sharon, Jonathan, Frank. I was very aware whilst I was trying to speak that in the back of my head I knew we only had an hour and a half.I felt a bit like I was being interrogated and got nervous and my words got mixed up quite a lot. Somehow, the meetingwas moved to discuss clinical care by Michelle because, I believe, of my trying to be clear but being unable to make people understand or listen. I do believe I did get interrupted. Michelle started going on about platelets which was relevant but not a priority point. I felt like the whole conversation just redirected into an unnecessarily long repetition of clinical things. I did tell my sister and I believe June too realised that I felt this wasn't the right things to be talking about. June, tried to give me a helping hand which gave a little more detail on what I was trying to say and explained that she thought I needed to say some more. My sister on behalf of myself explained quite thoroughly the points I was pointing to in my book. There were three that were very important but I wished to hopefully discuss them all. I felt helped by June and Janine very much as did my mum and sister. Janine also spoke about just understanding how I must feel and how my family feel because of the stress/treatment. She explained how nurses should realise that we are going through a hard time and am bound to be worried and anxious. I’m glad she explained that because that was an important point for me as I had spoken with her beforehand about situations where nurses had been...more than just a little bit insensitive shall we say. In the end, we tried to ascertain the main issues and carol said that if I wish to have another meeting I could and obviously vice-versa. She also gave me the opportunity to let her know the details of the person who was highly rude to me regarding going to thorpe park. I will give these to carol as I find it important for these type of people to be reprimanded as it is unfair and upsetting for dying children like myself to put up with that sort of childish behaviour.
Hopefully things will sort themselves out soon - I sincerely hope so.
Perserverance - keep on going x