Living With Mesothelioma _My Diary_ Today I went to my TSSG NHS Meeting as Patient Rep


A really lovely day today so the ride to Maidstone Hospital, to my TSSG Lung meet to do my job as a Patient Rep, and the walk from the car park was just lovely in the warm sun shine.

We arrived to early so had to wait as one my one Doctors and Nurses arrived. It was lovely to see every one as we only meet twice a year.

The Talks began.

Minutes of the last meeting out the way and reports of the actions given.

We had a good discussion on Strategic Clinical Network

The Audit of new diagnosis is getting better and the figures are becoming correct in each hospital so the information is more accurate now.

The information and submitted monthly and Data is collected and showing in the national Audit.

Raising awareness & earlier diagnosis of cancer is paramount to the treatment of Lung cancer. What i was so pleased about is that at last they are counting Mesothelioma in its own right drawing it out of the Lung Cancer figures it has always been hidden in.

A doctor did a talk on Mesothelioma but they took the mickey out of me as I kept correcting the info he was giving. Someone said “you should have let Mavis do this she knows more ” I wasn’t being rude but the Doctor didn’t know Asbestos wasn’t banned in the US. Its a continue Awareness needed isn’t it.

It would really seem they are having a hard time finding a treatment that will work and have come to the conclusion that radiation after a VATS is not needed. They have trailed and results back this up.

Also they are finding that the new Radiotherapy machines are the answer for Mesothelioma and give better results.

We patients are always chasing them for drugs when we are desperate but it would seem Radiation is the answer.

I agreed with a lot of his talk and we had a great discussion ending with me saying that I don’t want them to keep talking about the peak leveling off as there is a new wave of DIY and Schools and we need trials and treatment for a very long time.That there are many types of Meso due to the different Asbestos the different intake and Ingested that patients are all different and some want to fight and some don’t so to talk to patient to see what they want. This has been noted and will be used.

A talk and discussion on C/T Bi-ops for Lung Cancer was amazing and it was good to hear the problems they have with collecting the data.

I was told to go to the Clinical Research Network to find the National Database on trials -here is the link see if you can work it.

http://www.ukcrc.org/research-infrastructure/clinical-research-networks/uk-clinical-research-network-ukcrn/

Clinical research networks have been established in each of the four UK nations funded by the UK Health Departments. Together these national networks form the UK Clinical Research Network (UKCRN), strategic oversight for which is provided by the UKCRC.

202_UK_Wide_Map

Clinical research networks have been established in each of the four UK nations funded by the UK Health Departments. Together these national networks form the UK Clinical Research Network (UKCRN), strategic oversight for which is provided by the UKCRC.

The structure of the networks varies between each country, but all share the common goal of providing the infrastructure to support high quality clinical research studies for the benefit of patients. There is a commitment to ensure that the clinical research networks across the UK work together in an integrated manner to share experiences, develop joint initiatives and promote partnership and UK-wide working wherever possible.

The structure of the networks varies between each country, but all share the common goal of providing the infrastructure to support high quality clinical research studies for the benefit of patients. There is a commitment to ensure that the clinical research networks across the UK work together in an integrated manner to share experiences, develop joint initiatives and promote partnership and UK-wide working wherever possible.

We had another great discussion about Cancer Nurse Specialists  who have to do so much extra work instead of nursing that they are losing touch with Patients. I always had a CNS sit in my appointments and she gave me so much info but that was in the days when she had 400 patients now its 600 so she cant get around to see all those. Its very hard. This will be looked at.

The meeting came to a close and we all parted.

The drive home was in Rush Hour so very busy but I did go shopping as tomorrow is Drug Day at the Marsden.

Rays Blog    https://mesoandme.wordpress.com/2015/04/21/tuesday-139/

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s