The picture opposite is the conference room which was so professionally laid out. I have never been to a conference before so I was impressed. The speakers were all very informative and there was a lot of very useful information given and most of all, it was very posistive. http://www.mesothelioma.uk.com/
There was a welcome from
Helen Clayson who is themedical director at the Hospice of St Mary of Furness in Cumbria.
Mick Peake who is the National Lead clinician for lung cancer in Liecester was the first to speak.
He talked about Specialist Multi Disaplinary Teams (SMDT). This team would be made up of specialist doctors, surgeons, cancer specialist doctors, specialist nurses, doctors specialising in diagnosis from tissue specimens (histopathologists), physiotherapists, occupational therapists, psychologists, dieticians and any other health professionals. I found out that I can ask who my SMDT is. That will be a question I will take with me. He also said that by 2008 every hospital should have specialist MDTs as Plymouth already as a team as it is a hotspot for meso. I did question this as I had gone for a second opinion as I was not satisfied with the information my first Oncologist gave me.
Mick talked about improving services and also said that Mesothelioma had been included in the British Thoracic Society and Dept of health Lung cancer advisary groups. This was changed in Feb 2007. He asked everyone in the room to put pressure on local goverment were Mesothelioma is concerned.
Jeremy Steele Consultant in Oncology St Bartholomew’s hospital, and chair of Mesothelioma UK explained how cancer created damaged genes, genes tell your hair to grow and that intersted me as I have Alopecia and wondered is that was the reason my hair comes out. He had a lot of very good information.
John Edwards is consultant thoracic surgeon northern general hospital, Sheffield. He urged everyone to write to thier primary care trusts and ask for funding for research as a matter of urgency. There is liitle or no funding for research into Mesothelioma and for trials and treatments. This pressure would hopefully urge the trusts to acknowledge that Mesothelioma is here to stay for the moment and it matters to the peoplre it is affecting.
Helen Clayton talked about minimising the symptons of Mesothelioma and maximising life. She was also very informative and was a great chair for the event. She kept all the speakers in check by letting them know how long they had left and was very professional.
Tony Whitsun is with the greater Manchester Asbestos victims support group and advisd the sufferers and their families about their rights with benefits. One benefit few of us knew about was the CONSTANT ATTENDANCE ALLOWANCE. This benefit overlaps DLA and AA and is available to anyone who claims Industrial industry Disablement benefit.
The link below has more information.
Another benefit is Exceptionaly severe disablement benefit which you can get if you recieve the CAA benefit above. The link below will detail more information.
Careres Allowance is means tested and you will lose it if you earn over £87 week. More info below.
I also found out that the John Hutton proposal to compensate all Meso sufferers with IIDB will be brought into force in early 2008.
At the moment anyone who has an asbestos related condition cannot get IIDB if they have :
* Enviromental Exsposure
*Self Employment
*Work/Clothes contamination through third party (family member)
The new rule will hopefully put an end to that rule.
Laurie Kazan-Allen described by Helen Clayton as a “ TOXIC RADICAL” as she campaigns to get asbestos banned everywhere and showed some shocking pictures of asbestos factories, schools and wastelands with people standing/working with little or no protection.
One picture showed a manager asking the journalist “what are you worried about” as the manger stood beside his workers in an asbestos filled area. The worst countries are India, Pakistan, Kazakstan, Brazil and the shock one was CANADA. Canada supported the pro asbestos lobby.The link will give more information.
The first recorded case of Asbestos/Mesothelioma was in 1906.
Graham Sherlock Brown Graham is a surviver of 5 years and had an EPP (Extrapleural pneumonectomy) which means he had his lung removed. He uses PETAL which is an acronym for
P = Positive attitude
E = Eating and excercising well, (Graham does pilates)
T =Targets
A = Adapting to change
L = Living your life.
He was very inspirational.
Graham presented Meso UK with a cheque for £5,000 as he had a ball to celebrate his 5 th anniversary of survival.
He looked very well and it was good to see the positive side of Meso instead of the negative.
Natalie Doyle Nurse consultant rehabilitation royal marsdon, London. She talked about the psychological and emotional well being after diagnosis.
She also came out with some very inspirational quotes. “People first cancer second” and “Those who were not here will never know how it is to have survived”. She was very helpful with comments and advice, she said that every building has an Asbestos register and anyone could ask to view it.
This was a wonderful,informative day and I learnt a lot more than I anticipated. 
I met a lot of wonderful people there, a lovely lady who was unfortunate to have had an Asbestos board in her class room and Heather and Alan who are a wonderful couple and
I met a lot of wonderful people there, a lovely lady who was unfortunate to have had an Asbestos board in her class room and Heather and Alan who are a wonderful couple and are regular readers of the website.
All the people there were so positive and focused, it is a great boost to find we are all striving for the same goal, to survive. I would like to say thanks to my friend Jeannette who was a great support. Also to Rick and Fiona cooper. Fiona is writing a paper on Mesothelioma and the information carers want/need and what is available. Anyone interested in talking to her can get in touch by emailing
Just a little foot note for FIONA
I am now Licenced to F*A*R*T !
One of the side affects with cancer is that the digestive system slows down and creates wind.
It also apparently makes the suffere sweat, I have not come across this at the moment.
I hope all the info has been helpful and please email me with any questions at
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