A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos – A Meeting with British Lung Foundation


Oh how I hated my alarm clock today as it went off at 4am. Dark and cold as the heating doesn’t come on at that time I found my way to the shower and woke up as the water showered over me.

The dog would go with Ray he seemed to be telling us it was inhuman to expect him to go walking at that time.

We got to the station and was soon speeding through the countryside to London on the fast train.

We arrived at the Barbican Centre for 7.30am and walked down to the British Lung Foundation Office ready for our meeting.

The Mesothelioma Patrons Breakfast.

Everyone was so nice and we said all our hello’s.

Dr Penny Woods, British Lung Foundation

Dr Penny Woods CEO opened the meeting and gave us the Welcome, update and news.

Nathan Bennett

(He told us he loved jack Russell’s and I googled )

Nathen Bennet Policy and Public Affairs Officer next  –build and manage relationships with key external stakeholders, including MPs, peers, and officials within the Department of Health, NHS England, Public Health England, NICE and other bodies. Manage the research and drafting of policy positions across a broad range of issues. Proactively stay abreast of political developments and changing health policy.

Then it was my turn to talk and tell my story and what its like to have mesothelioma and the different treatments I have been through. I mentioned how pleased I was that we are having a Centre of Excellence and that at last money is coming through for funding research and many trials with new drugs. I mentioned asbestos in Schools and talked about the men that have the job of taking Asbestos out of the buildings and how they must be protected.

We had a discussion and exchanged knowledge.

Ian Jarrod Head Of Research gave a good presentation about all the BLF have achieved

Ian is our head of research and has worked at the BLF for a decade. He had previously studied biochemistry and worked in the medical research charity sector.

“Tackling lung disease is a huge challenge and there are many areas of unmet need for people who have lung disease, their families, carers and loved ones. Working at the BLF and being part of the effort to make a difference is very rewarding.”

Penny then closed the meeting and everyone seemed to have really found it interesting even Ray had a great time and stayed awake  and we all shook hands and they had to go on to a working day.

Bethany came and took us up to meet the Publicity team

https://www.blf.org.uk/what-we-do

We then left with Bethany and had a long chat with her at a lovely Café  Meson Los Barriles. I enjoyed a Lattie

It was now very sunny and very warm as we travelled home Ray fell asleep on the train bless !!!

https://statistics.blf.org.uk/mesothelioma

These statistics on mesothelioma in the UK were compiled as part of our Respiratory Health of the Nation project by teams at St George’s, University of London, Nottingham University and Imperial College London.

The disease information and research findings provided here refer only to mesothelioma of the chest, often called malignant pleural mesothelioma.

Numbers of people with mesothelioma

How many people in the UK have been diagnosed with mesothelioma?

Due to the short prognosis for mesothelioma, incidence and mortality data are more reliable than prevalence data in depicting trends.

However, in 2012, an estimated 5,400 people were living with mesothelioma in the UK.

Estimated numbers of people ever diagnosed with mesothelioma 2004–12

20042005200620072008200920102011201202,5005,0007,500

Year Number of people in the UK with mesothelioma
2004 5,039
2005 5,121
2006 5,396
2007 5,870
2008 5,822
2009 6,076
2010 6,401
2011 6,540
2012 5,419
2006: 5,400

How many males and females have mesothelioma in the UK?

Around 80% of mesothelioma cases occur in men. This reflects the greater likelihood of men having worked with asbestos in heavy industry or the armed forces.

In 2004–12, almost four times as many men as women had mesothelioma.

 

Number of males and females ever diagnosed with mesothelioma per 100,000, 2004–12

MaleFemale200420062008201020120246810121416

Year Male Female
2004 12 3
2005 12 3
2006 13 3
2007 14 3
2008 13 3
2009 14 3
2010 14 4
2011 14 4
2012 14 4
4

Ages of people with mesothelioma

How old are the people with mesothelioma in the UK?

Mesothelioma is mostly diagnosed in people aged over 70. However, over 20% of diagnoses are in people aged 51–60. The disease is rare in people under the age of 50.

Number of people per 100,000 ever diagnosed with mesothelioma, by age group, 2004–12

31 to 4041 to 5051 to 6061 to 7071 to 8081 and over200420062008201020120510152025303540455055

Year 31 to 40 41 to 50 51 to 60 61 to 70 71 to 80 81 and over
2004 1 2 8 27 30 21
2005 0 2 10 25 32 20
2006 0 2 9 27 38 24
2007 0 1 10 28 40 29
2008 0 1 10 28 38 31
2009 0 1 10 26 42 30
2010 0 1 10 27 46 30
2011 0 1 8 29 40 40
2012 1 1 7 30 43 35
29

Mesothelioma registrations

How many people were registered as new cases of mesothelioma in the UK in 2011?

Cancer registration is the collection of population-based data on every new diagnosis of cancer (and mortality and survival from cancer) by a network of cancer registries across the UK.  Data is collected on all patients whether they are treated in hospitals (acute, long stay, hospice or private) or by GPs. The Office for National Statistics collates the data to provide national figures annually.

According to the latest available cancer registration statistics, during 2011 there were 2,570 new cases of mesothelioma in the UK, an incidence rate of 2.8 per 100,000 persons. This is similar to the rate of new diagnoses estimated from GP statistics for recent years. However, GP statistics may underestimate the true incidence of cancer, because the diagnosis may be made in hospital during terminal illness, or post-mortem.

During 2011, 2,172 men and 398 women were registered as new cases of mesothelioma in the UK. These correspond to incidence rates of 5.2 per 100,000 for males and 0.8 per 100,000 for females.


How did rates of registration for mesothelioma vary across the UK in 2011?

England: There were higher rates of registration in the North East and South West compared with the UK generally. In Yorkshire and Humberside and the North East of England, male registration rates were higher than the rate for females. In other regions, notably the East Midlands, East of England, London and the South West of England, female registration rates were higher than the rates for males.

Scotland: There were lower rates of registration in Scotland compared with the UK generally, with a considerably higher registration rate for males compared with the rate for females.

Wales: The registration rate was lower compared with the UK generally, with the rate higher for females.

Northern Ireland: There were similar registration rates compared with the UK generally, with the rate for males lower.

Mesothelioma registration ratios, males and females, in each UK region, 2011

Age-standardised registration ratio (SRR) with 95% confidence intervalsMalesFemales050100150200North EastNorth WestYorkshire & HumbersideEast MidlandsWest MidlandsEast of EnglandLondonSouth EastSouth WestWalesScotlandNorthern IrelandUnited Kingdom

Region Males Females
North East 155.8 137.5
North West 100 100
Yorkshire & Humberside 113.5 87.5
East Midlands 98.1 112.5
West Midlands 73.1 75
East of England 100 137.5
London 86.5 125
South East 115.4 112.5
South West 105.8 112.5
Wales 59.6 75
Scotland 92.3 50
Northern Ireland 88.5 100
United Kingdom 100 100
100 [100, 100]

Deaths from mesothelioma

How many people died from mesothelioma in the UK in 2012?

In 2012, 2,431 people in the UK died of mesothelioma. This marks an increase of 13% from 2008. The Health and Safety Executive publishes mesothelioma mortality rates every year. Its data show that the annual number of deaths is now over 2,500 and is continuing to rise.

However, mortality, like incidence, is expected to plateau and begin to decline towards the end of the decade.

 

 

 

 

 

 

 

We have to clearly keep on raising more interest in Research we have to help the Mesowarriors that will be diagnosed in the future because I don’t see the figures declining we need more education on the dangers of Asbestos before that happens. People still take chances with DIY and Schools. The lads that work with Asbestos removal and then the recycling and fly tipping are a disgrace and a danger.

We cant keep burying the problem  But workshops like today bring people around the table and we learn from each other.

Today has been a good day.


 

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