Living with Mesothelioma -My Diary- 7th patient & Carer day 2012 -Warriors we have made another year xxxx


Its always difficult to relay back everything that goes on in Mesothelioma Uk Patient Carer Conference as so much is discussed and I sit taking it in all day.

We were very tired as I had woken up at 3am and then again at 4am it was no good I got up and got ready to go my fast train to London.

It was great meeting up with old friends again.

 Jeremy Steele our mesothelioma Consultant at St Barts in London spoke first to welcome us and then to talk about Oncology Research. Operations are going to play a bigger part it would seem if the Disease hasnt spread out of the lung and depending on the patient being strong.

So much is going on it seems.

Feheez Mohamed Consultant Surgeon at Bassingstoke gave a very informative speech about Peritoneal meso and Chemo hot wash I learnt alot about this Stomach Mesothelioma.

Jan Egerton was very good and told her story very well of her journey http://www.jansmeso.blogspot.co.uk/

The blogging Mesowarriors got together Tess, Debbie, Jan who gave a speech  and myself have a good laugh.

Liz Darlison talk about Mesothelioma Uk http://www.mesothelioma.uk.com/editorimages/NewsletterAutumn2012MesotheliomaUK.pdf

Lots of changes going on to carry it forward into 2013 and the results of a survey –Ray and I took part in this survey.

EXECUTIVE SUMMARY
 652 patients and carers responded to the survey, carried out between December 2011 and
April 2012.
 Overall experiences of care varied widely from “wonderful” to “barbaric”.
 Nearly 20% of responders saw their GP five or more times before being referred to a
hospital specialist.
 Many responders commented that GPs should have more training in recognising the signs
and symptoms of mesothelioma.
 About 50% did not fully understand their diagnosis when they were first told about it.
 34% of responders felt that their diagnosis could have been explained more sensitively.
 At diagnosis, 30% did not receive written information about mesothelioma.
 Over 36% would have liked more involvement in making decisions about their care.
 Several people commented that variations in the care available to patients in different
geographical locations were unfair.
 Just under 50% thought that their outpatients appointments were not frequent enough.
 Just over 50% said that doctors “always” gave understandable answers to their questions,
and several commented positively on doctors’ willingness to respond to their questions.
 40% said they were told different things by different doctors and nurses.
 Around 27% thought doctors treating them did not know enough about mesothelioma.
 88% were given the name of a Clinical Nurse Specialist and many positive comments were
made about the specialist nurses.
 Just under 50% felt they were not given emotional support in dealing with mesothelioma.
 71% said they were given information about self‐help and support groups. Many said they
found support groups very helpful, and many mentioned Mesothelioma UK.
 About 50% would have liked more support at home (such as home helps or district nurses).
 Almost all responders got the information they needed about getting financial help.
 Many comments about Macmillan nurses were very positive, but there were a fairly high
number of negative comments about Macmillan nurses.
 Most thought their care was well co‐ordinated between different organisations, but several
found a lack of communication between organisations, which caused them distress.
 55% of responders said they definitely received good support from their GP and community
nurses, and there were many positive comments about GPs and community nurses.

http://www.mesothelioma.uk.com/editorimages/Patient%20Perspective%20-%20Mesothelioma%20Patient%20Survey%20Report%202012%20FINAL.pdf

Jill lemon spoke about the Charity side –I also played apart I this with My book and the profits going to the charity last year through Motorhome facts Charity year where my friends Gerald Hornsby and Pusser and Ray donated their books to my charity year. thanks boys and thanks Gerald for all the publishing help.

I have a just giving and the profits from my book are still going into this http://www.justgiving.com/mavis-nye

This has come out very dark but Christine Winters of IATP told us of all the dangers of DIY and the Asbestos in Schools we do fear for the generation that is still in danger of Asbestos as they do House renovations and also the very young in older schools they are still in danger.

Laurie Kazen Allen talked about Global Awareness and the banning of Asbestos it would seem Russia is the worse place for mining and using Asbestos along with China.

http://ibasecretariat.org/

Asbestos Trade Data (2011)

Top Five Producers (tonnes):
   Russia 1,000,000
   China 440,000
   Brazil 302,300
   Kazakhstan 223,100
   Canada 50,000
 Top Five Users (tonnes):
   China 637,735
   India 321,803
   Russia 251,427
   Brazil 185,332
   Kazakhstan 155,166

 

Laurie gave a very informative talk well done.

The Conference came to an end and the Mesowarriors were able to relax and have a great laugh

Yep thats Ray under the mask

We said our good byes and made our way back to the Station to get the fast train home

St Pancreas is a lovely old building and yet we catch the modern fast train here.

So that is the end of a very long day

The sun was setting as we came home

The others have gone on to a Charity Disco in Hertfordshire

Have a great night xxxx

http://mesoandme.wordpress.com/2012/10/06/london-conference/ Rays Blog

Advertisements

2 thoughts on “Living with Mesothelioma -My Diary- 7th patient & Carer day 2012 -Warriors we have made another year xxxx

  1. Thanks Mav for the info about today we were looking forward to going but ERnie had his 2nd chemo on Thursday he was not up to going would have liked to meet up with others in the same boat as us

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