Living With Mesothelioma-My Diary-Awake to early. Saatchi Bill had a letter published in the Times

Wall to wall sunshine again today but I woke up at 2.30am and that was it. i just couldn’t get back to sleep. I was like this when I was first diagnosed and I would come on the computer at talk t my dear friend Peter. We would buy a cream cake and eat that being really naughty. He couldn’t sleep because he was in such terrible pain. He did die and I do miss him.

So I went onto the computer and chatted to friends in Canada and USA and Australia. Lou was on and we help any Mes warrior that was needing info like we do during the day.

Chatting with Sharon we realised we live near one another so we just have to meet up. She works around here so after Friday I will sort where we can meet up and have a good chat.

The day became morning and Ray got up, I was tired. My brain has been working overtime -its how I sort everything out and put my thoughts in a file to understand things and sort problems out. I think I have done it all and know where Im going –My new pathway.

I took photos of my Elephant Ears- Bergenia are more commonly known as Elephants ears duw to the size of their leaves. Large, broad, leathery leaves which make this an ideal ground cover perennial. Pink flowers …

I did have a quick nap after lunch and then took Louis out in the car to the park and a run around his field. The local Dog walkers were there in two vans with.  They walk them 4 at a time so the walkers get a lot of exercise. They are all put in crates in the vans and Louis stands watching -what he must be thinking I don’t know. Does he see them as prisoners ? He has to go to the kennels for 3 nights when I go to Manchester to a large Medical conference as Im talking about all the treatment and hard its been to find treatment. I have also a lot of messages from Mesowarriors and Carers and the problems they had or have. I handed all my notes in and this is the out come I can now talk for them. and I will use all there writings as the bases of my talk.

Poor Louis has to go to the kennel. he has been there 3 years ago and he pined so they had him in the office and spoilt him.

On the way home we called in the Chemist. I had ordered tablets but they were not delivered. There they were on a shelf and Deliver was on the copy of the prescription. These are my important nerve blocker. I was run out how do you get through that you need them.

Janet Boyle phoned me, A journalist specialising in Health and science. She supports children with cancer and the Bill covers her interest. She met me through my blog and she asked me if the Saatchi Bill covered Scotland. I thought it did but on contacting Saatchi Bill apparently it only covers wales and England -i hope they do manage to get to to pass in Scotland in time.

It was time to cook dinner when I got home. A day has finished and I hope I sleep tonight.

Lord Saatchi answered the Times today as they had said we dont need the Innovation Bill After this maybe they will understand. I wonder if they  lived in our shoes — they wouldn’t argue with it then. Now we are waiting for the Bill to be rewritten with the added ponts that have been raised.

http://saatchibill.tumblr.com/post/84211599218/published-in-the-times-today-our-letter-to-the-editor#.U191rfldVuY

Sir,

The evidence for the need for the Medical Innovation Bill is compelling. Around 18,000 doctors and patients replied to the Department of Health consultation supporting the Bill, many confirming that they have experienced the deterrent effect that an increasingly risk-averse culture is having on responsible medical innovation.

The objections in Mr Poole’s letter (Apr 24) relate to details of the Bill that were not in Lord Saatchi’s original text and will not be in the text that he intends to introduce early in the new session. The Bill team will soon publish a new draft which meets concerns expressed by legal and medical professionals.

Doctors must be given the freedom to innovate responsibly, with the confidence that the law will protect them if their decision is made with the support of a responsible body of medical opinion.

They must not be forced to wait until their decision is tested in expensive and traumatic litigation or disciplinary proceedings. Nobody wants that, except perhaps a small group of lawyers who make their living from the existing litigation-focused system.

The Bill will be an opportunity for all those who are concerned that the legal system is not properly serving patients with rare diseases, whose hope rests entirely on innovation.

Patients want to know that every responsible avenue is being explored in order to help them, and that doing nothing is no longer the easy and safe answer.

Good doctors must be given the protection and encouragement of the law to innovate; and bad doctors must be deterred from innovating without support of their colleagues.

The Bill achieves both aims, and is to be welcomed by lawyers, doctors and patients.
Daniel Greenberg
Parliamentary Counsel to the Medical Innovation Bill team

Living With Mesothelioma -My Diary- Peterborough Motor Home Show, The Royal Marsden Hospital Make Contact FRiday is me Appointment- and The Saatchi Bill is on its way.

We are back home from a great weekend. Wonderful to be with friends and have a great time.

I managed to walk around with my new walking frame and shopping was stored in the bag so that made carrying even easier.

I found people were great and let me pass through but it was hard trying not to trip people up with wheels.

There were many Motorhomes on show but nothing that really took my eye so happy to come home with my Clubman. she has been so easy to keep clean. I enjoyed have a good clean around and cooking in her.

We had a nice morning in the Marquee on Saturday.

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Many cakes were made and laid out to go with coffee.

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We then went around the show and spent some money.

In the late afternoon everyone piled they tables high with food to last all evening.

That was a really nice evening chatting away with friends until we went home to bed for a great sleep

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Sunday morning is breakfast where the cooks love cooking the 840 rashes of bacon 420 rolls. Bless them You can see my friend Jock with his blue gloves on really getting stuck into it. xx

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Sonja Linda and me waiting for the cooking our breakfast.

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Sunday people were going home and that left a few of us to meet up and go to a show.

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Beach Boys Uk were very good

 

Saturday Bee Gees were also very entertaining so a good night was had by all.

Back to the M/Home for the last sleep.

Leslie’s Photos for those people that know me and my friends https://picasaweb.google.com/101332044306934202354/Peterborough2014?authkey=Gv1sRgCKLrnem8ifrUxwE

So we came home today and the journey was very good.

When I arrived home I had two letters from the Marsden. I sat there with them in my hand and burst into tears. I dont do that very often but then I have had official treatment upto now. This is all new Phase 1 trials that I asked for. I was so pleased to be a  guinea pig but when it comes to it, my courage takes a plunge. How silly. Every thing will be explained to me. I think its because it has hit me it could be my last chance.

So Friday  2nd May Im off early to the Royal Marsden.

I have a large form to fill -Patient Pre-Registration Form.–Then a Pre-Attendance Form.  They will be filled up.

I will keep reporting back what goes on.

The Saatchi Bill  closed with more than 18,000 people signing -A great job done by all and Lord Saatchi must be so pleased with that.

The Department of Health’s consultation into the Medical Innovation Bill has closed and we now know that the evidence demonstrating a need for the Bill is compelling.

So far, more than 18,000 people ¬– including patients, doctors, researchers, scientists and charities – have responded to the consultation supporting the Bill, many confirming that they have experienced the deterrent effect that an increasingly risk-averse culture is having on responsible medical innovation.  Lord Woolf, former Lord Chief Justice – highest legal position in England – states why is necessary:  http://www.telegraph.co.uk/news/features/10785352/Saatchi-Bill-your-last-chance-to-help.html

The Saatchi Bill team is grateful for all the comments and input we have received throughout the consultation period. Thank you for your help and support.

All the concerns expressed about the Bill have been heard and a new draft Bill is already in play – it remains true to the core principles of nurturing the innovator and protecting the patient, but is clearer on the process that doctors must go through if they are to innovate safely.

The Bill team will publish a guide showing how the new draft Bill meets concerns expressed by legal and medical professionals. (For those lawyers reading this, it will make it clear that Bolam-Bolitho still stands and that the Bill will not support reckless experimentation).

At the same time, the new Bill will hold fast to our guiding principles. Doctors must be given the freedom to innovate responsibly, with the confidence that the law will protect them if their decision is made with the support of a responsible body of medical opinion and consultation.

They must not be forced to wait until their decision is tested in expensive and traumatic litigation or disciplinary proceedings. Nobody wants that, except perhaps a small group of lawyers who make their living from the existing litigation-focused system.

The Bill will be an opportunity for all those who are concerned that the legal system is not properly serving patients with rare diseases, whose hope rests entirely on innovation.

Patients want to know that every responsible avenue is being explored in order to help them, and that doing nothing is no longer the easy and safe answer.

And patients will still be protected from negligent treatment. A doctor who harms a patient through bad practice or negligent treatment or who makes a mistake can still be sued. Bad doctoring is still bad doctoring and a mistake that causes damage, remains a mistake.

Good doctors must be given the protection and encouragement of the law to innovate safely and responsibly.

And bad doctors must be deterred from innovating without support of their colleagues.

The Bill achieves both aims.

So, what happens next?

Jeremy Hunt promised to pass the Bill into law if the public wanted it. You have spoken and you have said, clearly and in numbers, that you support the Bill.

Civil servants in the Department of Health will analyse the results and then make a recommendation to Jeremy Hunt whether to support the Bill or not.

We are confident that he will.

It will then be up to the Government to find time to bring the Bill before Parliament for debate and to be passed in to law. This should happen before the next election.

The new Bill and the guide will be published shortly.

Rays blog http://mesoandme.wordpress.com/2014/04/28/monday-82/

Living With Mesothelioma-My Diary- Peterborough Motorhome Show.

Motorhomes Show View

We enjoyed a good journey to the show yesterday arriving here in Peterborough1.30. Joining a long line of M/Homes.

Parked up right by the stalls, we couldn’t be in a better place. Unloading the solar panel and putting up the thermal window covers. Finding the fresh water tap. We were all set up cosy. Jim who runs Motorhome fun met us an made sure we were all ok. We have a nice Marque to meet everyone in the evening which we did and met up with my group of friends that we met on these rallies. Its funny how you group up together. People  that we talk every day with on our camping groups. So we are have a mini Maverick met as well. All good fun. We are meeting up tonight again just for a chat as tomorrow is the main day of coffee morning afternoon tea (buffet) running into the late  night. Sunday is a Breakfast meet and then all meet up to go to a show of The Beach boys ad the Q band.

It has rained today on and off but we were able to walk around the show with Louis and he was so good walking past so many dogs. We campers all seem to have dogs. I must say that owners are so good picking up the mess though as you never see any.

I walked with my shopping buggy again and it was so good in helping me to walk further again although I was tired by the time I got back to the M/H.

Ray had gone in to get a piece of cheese hmm, at £15-00 for a tub wasn’t on though. Things are always so much dearer at the shows but this was taking the mick.

I did have a nap and then I had a phone call to do another interview for the Bloomsburg  Financial paper. That was a surprise and they wanted my thoughts on all the new trials being used on Mesothelioma instead if a true Meso trial. Well! this is Lord Saatchi’s idea and just why he is fighting to have the Bill passed. I was well pleased to discuss my thoughts for the British Lung Foundation. It was type up and read back to me. In the mean time

Ray went off on his own to look at the show and see if there was anything he would want to buy. It wasn’t fruitful he really doesn’t know how to spend money on him self. I had told him to get T shirts for the summer. No! nothing.

I had tidied up in here as I love cleaning all the woodwork and bathroom as it is all so cute and easy to clean.

Louis has had a good sleep as he came back all muddy and wet from the rain.

He loves the warm towel over him.

So we are just relaxing now and I will cook dinner the meet our friends tonight .

 

 

 

 

 

Living With Mesothelioma- My Diary- My Video Recording with Dean Fennell on the Day Lord Saatchi presented the Saatchi Bill

We had a great day yesterday as the sun shone and it was so warm.

I had some tiding up to do and we then was free to go out to give Louis a walk around his park. I have a ball thrower which is a god send as it means it takes little effort to get the ball a long way.

AS we walk round there is a little jump for the horses on the bridle path, so we have been training Louis to jump it. He does it quiet well so we should sort out other things for him to practice in. A sort of agility class.

A recording of one of my Interview Has been sent to me via the agency that recorded it. My computer doesn’t like the link. We had a terrible job trying to get it working.

Professor Fennell

Ray managed last night to download it to you tube where it now works. IATP will launch it today in their News Letter.As we are on our way to Peterborough Motorhome Show I have sneaked it on here

 

I was tired and worn out by the time I came to record this one and like all the recordings that day. It was done without any notes. I like the more natural way this has achieved and will remember this in all the Speeches I do this year.

Rays blog http://mesoandme.wordpress.com/2014/04/23/wednesday-84/

Living With Mesothelioma-My Diary-Saatchi Bill had a Live Google + Bought my New Wheeler so can throw my walking stick away

Today there was another great discussion on the Saatchi Bill if you have an hour to spare and the need to have treatment when there is no hope

https://plus.google.com/u/0/events/c80kqapi0048lilguoc1idq0934

I have said walk in my shoes if you want to know why we need the Saatchi Bill.

The campaign to gain support is nearly over and then its for the Higher men to work out how we can put it into place. Jeremy Hunt will be sorting it all out.

I have had a link but it doesn’t work so it has to be resent to me of all the recordings we did that day.As soon as I receive them I will publish on my Blog

We have been busy today the usual housework. The computer and Facebook all  take time.

Then Ray suggested I went to sort out a Tri Wheel Walker. We had noticed yesterday that as I walked around Teso and a good speed -for me.

So I sort of agreed Ok I will have a look. We arrived at the Business Park where had had a look before.

There wasnt anyone in the shop so I was able to test run about 6. One was a bright orange and would have suit my mad sense of humour.

There were 4 wheeled ones with a seat but they were a bit to big and bulky for the car.

A man finally appeared and he helped us to higher the handles as Im so tall, it did feel very comfortable.

Nice large wheels to go over rough ground like Motorhome shows and camp site fields.

So that it I gave in but I will be able to get more exercise which I so badly need. Its the real downside of illness. Not having the energy to move around is so bad for you.

I will also be able to walk around Peterborough Motor Home Show -Yipee and look in New Motorhomes. –Oh did I promise I wouldnt buy another one he he he !!!

Schools are back in the headlines

http://www.asbestosexposureschools.co.uk/npaper%20links/H%20of%20C%20questions.htm

 

Lords written answer: Schools Asbestos

Schools: Asbestos. 9 Apr 2014 : Column WA309

Asked by Lord Alton of Liverpool : To ask Her Majesty’s Government what assessment they have made of the report, Asbestos in Schools, published by the All-Party Parliamentary Group on Occupational Safety and Health; what assessment they have made of the view of the Committee on Carcinogenicity of the vulnerability of children to asbestos; what recent figures they have for the incidence of asbestos-related diseases in children and teachers; and when they intend to publish their response to the evidence submitted to their review of policy on asbestos management in schools.[HL6545]

The Parliamentary Under-Secretary of State for Schools (Lord Nash) (Con): The Department for Education is currently reviewing its policy on asbestos management in schools and intends to publish the outcome of the review by the end of June. The scope of the review includes the conclusions of the Committee on Carcinogenicity’s statement on the relative vulnerability of children and the recommendations from the reportAsbestos in Schools: The Need for Action produced by the All-Party Parliamentary Group on Occupational Safety and Health. The Health and Safety Executive publishes figures on asbestos-related deaths—including occupational information—on its website. We do not know of any figures detailing the incidence of asbestos-related diseases in children.

Commons written answer. Schools Asbestos

Mon, 31 March 2014 House of Commons – Written Answer

Dr Huppert: To ask the Secretary of State for Education if he will issue to schools specific guidance on removing asbestos from premises. [193714]

Mr Laws: The guidance from the Health and Safety Executive is that, if asbestos is undamaged and unlikely to be disturbed, then it is usually safer to leave it in place and to manage it as required by the Control of Asbestos Regulations 2012. If asbestos is found to be in an unsealed, damaged or poor condition, then it should be repaired, sealed, enclosed or removed using trained personnel. The Department for Education has no plans to issue school-specific guidance.

2014 is still very much Asbestos and Mesothelioma Aware.

I have been invited to give a presentation at My Cancer Network I have recieved the outline to talk about. It looks good and is right up my street.

(We are trying to focus discussions at the meeting on how patients access services throughout their pathway with a particular interest in getting patients into the system quicker from primary care and then what happens to patients when they are discharged or continue to access services after initial treatment. To hear from you your thoughts about streamlining services for lung cancer patients would be of specific interest.)

I will get writing

 

Living With Mesothelioma -My Diary- Easter is over so we are on the last few days to show our support for the Saatchi Bill- Happy Birthday to Our Queen

So Easter is all over now until next year. All the chocolate eggs and now we all go on a diet.

We went no where yesterday as the rain never stopped until evening.

I watched a great film -The first Harry Potter and now Im watching no 2. I will get hooked on them if they are re showing all the films.

Harry-Potter-Prequel

Its funny how we have watched him grow up before our eyes.

Must admit I fell asleep bored as the rain was belting down.

We woke to a wonderful sunny day today though. Had a lovely morning pottering around and chatting on Facebook making sure everyone was well today.

Then we went out to buy Louis chickens for me to roast. One to roast and a spare in the freezer.

Calling in at the Park for him to have a really lovely run around. We have a very tired little Dog here now. He will have a good dinner now the chicken is all roasted for him. He loves freshly cooked meat. Spoilt dog.

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Today Our Queen is 88 years old –happy Birthday your Majesty

Photo: A very happy birthday to Her Majesty The Queen!! Long May she reign over us!!!! X love all the splendor of Royalty and the gund had to fire 88 times today.

Royal salute at Green Park

http://www.bbc.co.uk/news/uk-27100517 there is a video on here

The Queen has two Birthdays today and then trooping of the Colour In June

The Queen’s 88th birthday has been marked across the UK with traditional gun salutes.

A 41-gun royal salute was fired in Green Park in London and a 62 gun-salute from the Tower of London.

Gunners from 105th Regiment Royal Artillery fired two 21-gun royal salutes at Edinburgh and Stirling Castles.

Salutes were also fired in Northern Ireland and Wales. The Queen is spending the day privately at Windsor.

Tradition followed

The Queen was born on 21 April 1926 at the home of her mother’s parents in Mayfair.

However, her birthday is also celebrated officially each year in June at the Trooping the Colour service – which this year will take place on 14 June.

Something is going on as we are having so many earthquakes.

In the past 30 days, we’ve seen NINETEEN 6.0M+ earthquakes… SEVEN 7.0M+ earthquakes… and TWO 8.0M+ events (with tsunami warnings issued for each). EXCESS…

The ADAO Asbestos Awareness Videos and Newsletter are published today.

http://archive.constantcontact.com/fs113/1101491837344/archive/1117146172114.html

adao15

Saatchi Bill
Join Dr Ranj and Lord Saatchi tomorrow at 4pm for a Google hangout on the Medical Innovation Bill.
Watch here: http://bit.ly/1lbPzlZJoining the panel will be:

Harrison’s Fund
Right to Try
Charlie Chan – Consultant Surgeon
Prof Stephen Kennedy-University of Oxford
Prof David Walker – Professor of Paediatric Oncology, University of Nottingham
Look forward to seeing you all.
Photo: Join Dr Ranj and Lord Saatchi tomorrow at 4pm for a Google hangout on the Medical Innovation Bill.</p><br /><br />
<p>Watch here: http://bit.ly/1lbPzlZ</p><br /><br />
<p>Joining the panel will be:</p><br /><br />
<p>Harrison's Fund<br /><br /><br />
Right to Try<br /><br /><br />
Charlie Chan - Consultant Surgeon<br /><br /><br />
Prof Stephen Kennedy-University of Oxford<br /><br /><br />
Prof David Walker - Professor of Paediatric Oncology, University of Nottingham</p><br /><br />
<p>Look forward to seeing you all.

 

Rays Blog http://mesoandme.wordpress.com/

Living With Mesothelioma -My Diary- Easter Saturday Mesowarrior Beccy Lewington is back in the papers Raising Asbestos Awareness.

Had a good day today although not achieved much as I laid awake for sometime last night. I wasn’t in pain but just couldn’t sleep. I had the hallucinations from my Nerve blocker.
Its crazy I sat up in bed and thought the dog was sitting on my bed but then it changed in a dear little man. I had been watching that lovely dwarf on the telly with his family and there they were sitting on my bed. I sat up and actually put my hand out to stroke them. Now how weird is that . This has got to stop before I go mad they will bring a straight jacket for me soon. ha ha !!!
I had a stew cooking so slowly in the slow cook. The smell all day has been divine.
It has been sunny but chilly this morning and warmer this afternoon.
On 9 May 2013 20:12 Was when I first spoke to Beccy and her father had had to stop going to Germany. She and her dad were in the paper as they were raising awareness to the new Compensation Bill that was then in its infancy.
We chatted away on Facebook as she went through the awful last days of her Fathers life.
I have put the article in my blog and its getting tweeted as well It is so good to have a fighter in our corner xx well done

Larrie and Rebecca Lewington

Larrie Lewington, 65, from Eynsham, Oxfordshire, was exposed to asbestos in his 20s while working as a lagger.

He was diagnosed with mesothelioma in August 2012, so he will be eligible for compensation under the new scheme, but his daughter Rebecca told the BBC the 70% cap on compensation was “insulting”.

She said: “When my dad was working with asbestos the government at the time knew it was dangerous and they need to take some responsibility.

“For them to do this scheme and then say they are going to cap it is incredible. It’s insulting.

“My dad worked his whole life, paid all his taxes and his national insurance, and he never borrowed a penny. Now, through no fault of his own, he’s got this disease.

“It’s been devastating. We’re a very close family and it’s ruined our lives.

“I wish I could go into Parliament and face them and they could see the pure pain that I’ve got.

“It’s as good as murder what they’ve done, allowing this substance to be used and now, to put it bluntly, it is going to kill my dad.”

Because of the delay in developing symptoms, some workers who were negligently exposed to asbestos at work find it difficult to trace an employer or insurer who is liable to pay compensation.

On Wednesday, the government announced a Mesothelioma Bill, which will set up a payment scheme aimed at addressing this “market failure”.

The proposal is to offer all victims using the scheme a flat-rate payout set at 70% of the average compensation paid out by insurers to those victims not using the scheme.

It will be paid for by a levy on insurance companies which provide employers’ liability and is expected to cost the insurance industry £300m over the next 10 years while helping more than 300 sufferers a year.

But campaigners say the scheme does not go far enough in compensating victims, and thousands who suffer from other asbestos related diseases, such asbestosis and pleural thickening, will not receive anything.

The proposed 70% cap on compensation is also a “red line” for campaigners. (This was change in the Bill and 80% was won)

Tony Whitston, chairman of the Asbestos Victims Support Group, said: “What appears to be a great deal brokered by government, and costing the insurance industry a small fortune, is in reality something entirely different.

“This scheme excludes 50% of asbestos victims, pays ‘average’ compensation only to victims dying from the cancer mesothelioma and then slashes average compensation by 30%.

“This scheme is not what we expected. It was presented as a fait accompli to asbestos victims and saves the insurance industry a small fortune at huge cost to asbestos victims.

“The bill needs to be unpicked and repackaged if the victims’ best interests are going to be truly at its heart.”

‘Life is a mess’There have also been concerns that only those who are diagnosed after 25 July 2012, when the government first announced details of the scheme, will be eligible for compensation.

Arthur Butts, an electrician who is now his 70s and was diagnosed with the disease two years ago, told BBC Radio 4′s Today programme that there was “no sense” in the cut-off point.

Read all the write up here

http://www.bbc.co.uk/news/uk-224621

Today beccy and her lovely family have raised more Awareness

Oxford Mail: aughters and grandchildren of Larrie Lewington, clockwise from front left, Callum Lewington, 13, Summer Clapperton, two, Rebecca Lewington, 31, Louis Clapperton, six, Charlie Unwin, seven, Evie Unwin, 11, Jessica Lewington, 30, Jake Cross, 11Buy this photo »daughters and grandchildren of Larrie Lewington, clockwise from front left, Callum Lewington, 13, Summer Clapperton, two, Rebecca Lewington, 31, Louis Clapperton, six, Charlie Unwin, seven, Evie Unwin, 11, Jessica Lewington, 30, Jake Cross, 11

THE family of a man who died after years of exposure to asbestos have warned of a “ticking timebomb” as deaths from the disease are expected to peak over the next two years.

Grandfather Larrie Lewington, 65, of Wytham View, Eynsham, died in October last year from an incurable cancer called mesothelioma – after breathing in asbestos during his working life.

An inquest at Oxfordshire Coroner’s Court on Wednesday found Mr Lewington, died from the industrial disease.

His children Rebecca, 31, Jessica, 30, and Benjamin, 21, sister Delia Russell, 68, and brother Richard, 77, described him as a funny family man who kept his humour and dignity until death.

And they say more needs to be done to educate people about the dangers of being exposed to asbestos to prevent more unnecessary deaths.
Rebecca said: “There are so many people who don’t realise how dangerous asbestos is but such a small amount can cause the disease.
“It is important that if you think you have been exposed to it you should contact your doctors because by the time it is diagnosed it is too late, but if you go to your doctors in time they can detect it and there are things they can do to help.
“All the people my dad worked with have now passed away bar one.”
Between 2006 until 2010 across Oxfordshire there were 106 deaths due to mesothelioma – according to the Government’s Office for National Statistics.
And across 24 years in the county – from 1981 to 2005 – 893 people died from the asbestos-related cancer.
A report from the Health and Safety Executive (HSE) shows that the expected number of mesothelioma cases amongst males is expected to increase to a peak of 2,038 in 2016.
Mr Lewington’s daughter Rebecca said: “We are very angry that my dad lost his life at such a young age due to asbestos exposure which the Government was well aware was dangerous.
“He wanted to see his grandchildren grow up, it is not fair on them – they adored him.
“He was as fit as a fiddle otherwise and lost his life working hard for his family unaware of the dangers of the materials he was handling.”
Mr Lewington, grandfather to Rebecca’s children Callum, 13, Jake, 11, Louis, six, and Summer, two, and Jessica’s children Charlie, seven, and Evie, three, worked for Witney-based Kidlington Insulation from 1973 to 1978. As a thermal insulation engineer he poured bags of the deadly dust-like particle asbestos into a bucket and mixed it with water using his hands.
He was diagnosed with mesothelioma at the Churchill Hospital in Headington – which is where 30 years previously his family say he had been handling asbestos to insulate boiler room pipes.
His children raised £35,000 for alternative treatment in Frankfurt Hospital in Germany after chemotherapy sessions in Oxford did not stop the cancer spreading.
His sister Mrs Russell said: “Those kids fought like mad to keep him alive.”
But an inquest heard he died in October from the cancer.
Assistant coroner Peter Clark said: “A person’s life is not defined by their death and what shines through all the paperwork is clearly a family man who was supported and loved.”

Such a lovely family and so sad when they have to go through the Inquest just as they are bringing themselves around and picking themselves up again.

valentines

It goes to show How the Mesowarriors fight every inch of the way. The disease is bad enough with out all the tiring fight for treatment compensation and then the Post Mortem.

Living With Mesothelioma -My Diary- Hot Cross Buns and a fattening Tiramisu. The Royal Society Of Medicine have published about the Saatchi Bill

Hot cross buns

God Friday has been very sunny and just so relaxing as we had worked hard gardening and sorting things out.

Even though we are retired we still work on on the bases of having the weekend off.

We have been to the park with Louis again as he runs and runs in there. off lead and free. A dogs dream. There were many cars parked today. I expect the owners had walked into Canterbury. 7 miles. We did it once when we moved down here. Walked in and out it was a great walk. I wish we could still do it.

http://www.kent.gov.uk/leisure-and-community/parks-and-outdoor-activities/cycling/find-a-cycle-route-or-centre/cycle-rides-crab-and-winkle-way

 Canterbury to Whitstable railway opened in 1830 and quickly became affectionately known as the Crab & Winkle Line. It was the third railway ever to be built and the first to carry passengers regularly and to offer season tickets. A pioneer in railway engineering, there were embankments, cuttings and a 764 metre tunnel through the high ground at Tyler Hill (now under the University of Kent).

The locomotive ‘Invicta’ and the line were engineered by George Stephenson and his son Robert at their works in Newcastle upon Tyne. The ‘Invicta’, now on view at the Museum of Canterbury in Stour Street, was based upon the more famous ‘Rocket’ which actually came into service four months later. With only 12 horse power the Invicta could only be used on part of the line. Otherwise carriages were hauled by cables using steam driven engines at The Winding Pond in Clowes Wood and The Halt on Tyler Hill Road. Through the woods the railway men would apparently slow down so that pheasant traps could be checked and mushrooms picked!

Passengers were carried until 1931 and goods until the line closed in 1952, though it did re-open for several weeks in 1953, after the great floods cut the main coastal line.

With thanks to the Blean Heritage and Community Group

The Crab & Winkle Way. This family friendly cycle route was opened in 1999 in partnership between Canterbury City Council, the Crab & Winkle Line Trust, Kent County Council, Kentish Stour Countryside Partnership and Sustrans. It is part of Route 1 (Inverness to Dover) of the National Cycle Network developed by Sustrans.
Download Crab & Winkle Way leaflet/map.

For more information see the Crab & Winkle Line Trust’s website; a charity formed in 1997 they work to promote history and improve public access along the route.

As we played with Louis some came back with their dogs but our boy wasn’t interested he just wanted his own ball thrown and then stopped to eat the grass.

I came home and picked my own herbs to flavour the dinner. The mint went in the potatoes and peas and simmered away to flavour. I then chopped and sprinkled the flat leaf  parsley over the Gammon steak and tomatoes.

Guess what was for sweet

DCF 1.0

 

Tiramisu Oh how lovely –and fattening.

We found a Interesting site today and a new gadget we all should have but especially in the trade

http://www.asbestos-alert.com/how_our_detector_works

The Select Group, the ALERT project’s Exploitation Managers are responsible for production of the detector and taking it to market estimate that it will take 12 to 18 months to get the first production units for sale, with a target price of perhaps 600-700 Euros.

As production increases after the initial product launch, Select hope that costs may be cut even further,

 making the detectors even more affordable for an individual plumber, electrician or building renovator.

“These tradespeople are the most frequently affected by asbestos-related diseases and most who get the diseases will die from them,” the team says.

See more at: http://www.asbestos-alert.com/how_our_detector_works#sthash.FpmbLVvf.dpuf

Alert_Concepts_x_3

 

 

 

DSCF9051

http://saatchibill.tumblr.com/post/82990329777/the-saatchi-bill-will-allow-responsible-innovation-in#.U0_RAuZdVss

By Michael D Rawlins President, Royal Society of Medicine

Published in the BMJ (British Medical Journal) 15th April 2014

You need to either be a member of the BMJ or to sign up for their 14 day trial

Many doctors, myself included, will have occasionally tried to treat individual patients – where all else has failed – with novel interventions. This may be where there is no recognised form of effective treatment; or when existing one(s) have not produced the desired effect. The legal basis for doing so, at least for pharmaceuticals, has been the so-called “named patient” provisions of Section 9 of the Medicines Act 19682 which permits any doctor to be able “to sell, procure or supply a medicinal product to a patient under his or her care”.

Although my own experience has been disappointing there have been occasions, when intervening in such a manner, have subsequently led to significant advances. Indeed, such observations are arguably a form of n-of-1 trial.

Confidence in using the “named patient” provisions of the Medicines Act has though become eroded. A number of legal authorities have pointed out that departing from what is regarded as “established practice” or “the standard of care” leaves a doctor open to an action for negligence. The definition of “the standard of care” traditionally follows the Bolam principle 2 as amended by the Bolitho decision3 but was forcefully criticised by Lady Butler-Schloss4 in her capacity as President of the Family Division of the High Court:

“The Bolam test ought not to be allowed to inhibit medical progress. And it is clear that if one waited for the Bolam

test to be complied with to its fullest extent, no innovative

work such as the use of penicillin or performing heart

transplant surgery would ever be attempted”.

The Medical Innovation Bill attempts to rectify this situation. It proposes legislation stating that it would not be negligent for a doctor to depart from the existing range of accepted medical treatments, for a condition, in carefully defined circumstances. These circumstances – allowing for responsible innovation – are laid out in later Sections of the Bill. They include a plausible basis for the use proposed treatment, and an assessment of the risks that could be reasonably expected to be associated with it. The Bill also proposes that, before embarking on such a treatment, the doctor should have discussed it with the patient, the multi-disciplinary team responsible for the patient’s care, and with the Institutions Responsible Officer. The Bill emphasises that its provisions are solely concerned with the patient’s best interests.

The Bill as originally introduced into the House of Lords in May 2013, as a Private Members Bill by Lord (Maurice) Saatchi, and has become known colloquially as “The Saatchi Bill”. The Department of Health is currently consulting on a draft version of it5. I was originally sceptical about the need for the Saatchi Bill but I have been persuaded otherwise. First, it is clear from the comments of Lady Butler-Schloss4, as well as other legal authorities Lord Saatchi has consulted, that there are serious legal impediments in civil law to using therapeutic interventions that do not represent the current standard of care. Second, although Lord Saatchi’s original Bill was confined to patients with malignant disease this restriction has, rightly in my view, been removed in the current draft. There are, after all, many other miserable conditions for which we have no, or very limited, remedies. Third, I did not believe that his suggestion for approval by a multi-disciplinary team, alone, provided sufficient safeguards: the inclusion, now, of agreement by a doctor’s Responsible Officer provides me with re-assurance.

Despite my strong support for the Medical Innovation Bill there are important consequences for the professions when (as I hope) it becomes law:

1) Just because a particular intervention appears to have been effective in an individual patient it cannot be assumed that the results are generalisable. Further research in the form of one or more randomised controlled trials, or case series, will be necessary to establish its effectiveness. To take a recent example, a case report6 describing the apparently successful treatment of generalised juvenile pustular psoriasis with etanercept, requires confirmation before it can be regarded as the current standard of care.

2) There may be occasions when Responsible Officers wish to seek other advice before approving the proposed use of an intervention in accordance with the provisions of the Medical Innovation Bill. This will often need to be provided very rapidly especially when a patient has a life-threatening illness. The Academy of Medical Sciences, or some of the specialist associations such as the British Pharmacological Society, could have an important role here in offering a speedy advice service.

3) If the intentions behind the Medical Innovation Bill are to be fulfilled, NHS hospital Trusts, and their Responsible Officers, will need to look on proposals sympathetically. Anecdotal evidence suggests that too many Trusts are fearful of departing from the prevailing standard of care because of the possibility of litigation. The Bill should provide them with adequate reassurance.

4) It is essential that the results of using the Bill’s provisions, in individual patients, are placed in the public domain whether or not they have been successful. This would allow others not only to learn from such experiences but – especially for interventions that appear to have been successful – to undertake formal research.

I believe that the use of the provisions in the draft Medical Innovation Bill offer benefits to patients – especially those with rarer diseases – as well as to the furtherance of medical science. Subject to the responses to consultation it is the government’s intention to have it on the statute book at the earliest opportunity5.

References

1. Medicines Act (1968). www.legislation.gov.uk/ukpga/1968/67 (accessed 12.04.14)

2. McNair J. Bolam v Friern Hospital Management Committee (1957) 1 WLR 582.www.e-lawresources.co.uk/Bolam-v—Friern-Hospital-Management-Committee.php (accessed 12.04.14)

3. House of Lords. Bolitho v City and Hackney Health Authority (1998) AC 232.www.bailii.org/uk/cases/UKHL/1997/46.html (accessed 12.04.14)

4. Butler-Schloss LJ. Simms v Simms (2002) FAM.83 para 48.www.bailii.org/ew/cases/EWHC/Fam/2002/2734.html (accessed 12.04.14)

5. Department of Health. Legislation to encourage medical innovation.www.gov.uk/government/uploads/system/uploads/attachment_data/file/285272/9959-TSO-2901828-Legislation_to_Encourage_Medical_Innovation.pdf (accessed 12.04.14)

6. Fialová J1, Vojáčková N, Vaňousová D, Hercogová J. Juvenile generalized pustular psoriasis treated with etanercept. 2014;2:105-8. doi:10.1111/dth.12065.

Sign the petition for the Medical Innovation Bill: http://chn.ge/1pqY6lS

 

Want more info?

 

READ: Get the facts

 

READ: Jeremy Hunt’s support for the Bill

 

READ: Coverage in the Telegraph

 

 

Living With Mesothelioma -My Diary- Happy Easter -Bernie Banton issue a lovely Poster to warn Of Asbestos in the Home warning when doing DIY

I have managed to keep the pain down and have had a busy 2 day.

I had to tidy the garden and take the weeds that  are growing in between the slabs. How do they get there. Do the seeds land and grow or do they force their way up from under the slabs. Im having the builder come in May to render with cement so the problem might go away.

Then I tidied the bushes so they look better. Ray helped and cut done all the bigger trees for me and lower bushes so we had a good day yesterday.

easter chick

I thought the weather was going to be so nice for Easter but Im afraid it has now gone cloudy and cool. Such a shame for those that have gone away. We have decided to stay at home and finish the jobs I wanted to do. We are going to Peterborough next week so we can get the clothes packed. We need to save our strength as walking around is very tiring. We cant believe we have had our Autosleeper Clubman for 5 years now as we bought her in Peterborough. Ray always gets nervous when i start looking again.

But I love ours as she is a real Classic even at a 2002 model.  She has been good for us.

So I decided today to defrost the 2 freezers i have in the shed. A great idea to have it out of the kitchen, a bad idea when cleaning it out. A you have to take all the food out and make sure it doesn’t defrost. So B you have to work as quickly as you can.

I did it with the hairdryer. That melts the Ice well but of coarse you have to take a bowl of water out there to clean it.

The job was soon done and I was able to put everything back and I ended up with a draw empty just by tidying up.

I felt so good with myself and went in for a coffee and fell asleep.

I sent over some more photos for my Magazine write up, this is going to be a good one as it is all my story from 15. So many years to talk about that I need a series but the have manged to squash it all down. Cant wait to see it in print now.

Rod in Australia has published a greet campaign photo

17/04/2014 – Australia – The World
Tomorrow is Good Friday, a significant day for those of us who have a Christian faith, it is also the start of a four day long weekend (in Australia at least), which means Do-It-Yourself renovation time! Which in a lot of cases means DIY asbestos exposure or removal time! Can you be sure your home doesn’t contain asbestos? Have you had your home assessed for asbestos? DIY Asbestos could kill you many years down the track – worse, as a parent, you could be responsible for your child’s death even after you have died!
Remember, DIY Asbestos Is Dicing With Death – Know The Dangers – Be Asbestos Aware 365 – Act Now…Ask Us How!
– Rod Smith

A great time to warn people

BLF made my video for Take Five which give the same warning

Nancy has written a great piece on Peripheral Neuropathy

It has explained my condition so well, or should I say I have this condition just as she has described it.

Mesothelioma patients often face months of treatment to fight back the growing cancer cells in their body. Most often, though, these same treatments can result in side effects that cause sickness, infections and pain. While many patients are aware of these side effects, some patients are caught off guard from the lesser known side effect, neuropathy, which can potentially become debilitating.

According to statistics, nearly one-third of all cancer patients who receive chemotherapy will be affected by chemotherapy-induced peripheral neuropathy. Chemotherapy can cause nerve damage, leading to shooting pain, burning, tingling, numbness, problems with balance and grasping things, as well as cold or heat sensitivity. Neuropathy can also result from radiation and surgery. Treating this condition has proven to be challenging, and living with neuropathy can negatively affect a patient’s quality of live.

“Peripheral neuropathy is a chronic, debilitating problem, with some patients enduring pain, numbness, and tingling for months, possibly years, after completion of chemotherapy,” says researcher Ellen M. Lavoie Smith, PhD, an assistant professor in the School of Nursing at University of Michigan, Ann Arbor, according to WebMD.

Mesothelioma patients should alert their doctors if they are suffering from neuropathy symptoms from mesothelioma treatment. There are a variety of options available to help patients live a higher quality of life during and after their treatments.

Doctors at MD Anderson Cancer Center sometimes resort to trial and error to relieve neuropathy symptoms for cancer patients. For example, if a patient is still undergoing chemotherapy treatments when the neuropathy starts, “the oncologist may lower the dose or extend the time between doses of the drug that are suspected of causing neuropathy,” said Allen Burton, M.D., chair of the Department of Pain Medicine.

MD Anderson physicians may also prescribe pain medications in conjunction with physical therapy. The combination has proven to both reduce pain and restore the patient’s ability to function. In addition, physicians may try alternative treatments including acupuncture and heat therapy.

The antidepressant drug Cymbalta has been found to reduce neuropathy symptoms in diabetic patients, who frequently experience neuropathy. Hoping to find the same relief for cancer patients, a team of researchers from the University of Michigan School of Nursing, led by Smith, tested the medicine on over 200 people who suffered from chemotherapy-induced neuropathy. According to a 2012 article in WebMD, nearly 60% of the patients experienced a decrease in their pain. Cymbalta was the first drug found to alleviate chemotherapy-induced neuropathy symptoms in cancer patients.

Doctors are just as concerned about a mesothelioma patient’s quality of life as they are in treating the cancer. It is important that patients work closely with their doctor and medical team to find the best option for managing neuropathy.

Sources:
Cymbalta May Relieve Chemo-Induced Pain, Tingling
Cymbalta Reduces Chemotherapy Induced Neuropathy
Neuropathy: It’s More than a Feeling

More articles by 

Nancy Meredith is a blog and web content writer with more than 20 years of professional experience in the Information Technology industry. She has been writing about Mesothelioma for 4 years. Follow Nancy on Google+

 

Read more: http://mesotheliomahelp.net/blog/2014/04/mesothelioma-patients-work-doctors-manage-neuropathy#ixzz2zAyCbSHb
Follow us: @_mesothelioma__ on Twitter

A friend on Face Book is visiting the Singing Ringing Tree I had never heard of it But Its a Burnley—have a listen x

Rays Blog http://mesoandme.wordpress.com/2014/04/17/wednesday-83/

Living Withe Mesothelioma -My Diary- Shopping Writing and Saatchi Bill has reached 11,000 but we want more. Lets show the Government that people power can make history

Yesterday was another childhood sunny day. We seemed to always have summer like this when I was a child. Alway sunny and off to the beach to camp with my school friends. My Dad had a friend in the Dockyard and we went to camp with them at Mister in the Isle of Sheppey.

It was after the war when you could by ex military stock. Well he had bought an Army tent. Huge and they had proper beds in there. It fascinated me.

We enjoyed going shopping yesterday as I wanted to go to Lidl’s as Ray wanted to go to Canterbury to buy a new telly. Once on thing goes everything seems to go The washing machine , my monitor, and now a small telly we have in the den here so I can keep up with my soaps when on the computer each evening.

Well I haven’t been to Lidl’s for sometime, and I loved it. Shopping was really cheaper and also I love buying and trying things I have never had before. Of coarse I love the feeling of Spain, as that is just how all the shops a laid out .

So we came home with as much as I get in Tesco’s but over £20.00 cheaper. Im a happy bunny. Funny how little things can please.

I had a phone call from Take a Break Special this is the summer issue and I have been working with them as they are writing my story in a way it hasn’t been written before. The story was re read to me and Im very pleased with it. So it is a wrap as they say. I have to send a couple more photos today and then its all ready for print.

I also have a email from Mesothelioma Uk to write a piece so I will knuckle down this weekend and write that.

So its all busy. It never stops but I don’t mind.

Well it was tuesday and the Saatchi Bill question and  Answer was on Facebook it was very hard keeping up with the questions but I did get a few asked and answered mainly by Doctor Chan.

One very amazing point we  learnt  is that if you have peritoneal  he said —Paul Sugarbaker is excellent, but Brendan Moran in Basingstoke (Pelican Centre) does the same thing in the UK, as Paul (he trained with Paul in the USA). This is to take the linings from organs ad then hot Chemo –we didn’t know that and our Jan had hunted everywhere for info on her Op as everything was going wrong for her and she died. The sooner we get a central Bank of info the better. We need to know where all the treatments are.

Also that everyone can have a Phase one trial it has nothing to do with how many Chemos you have had previously. They are only done in large hospitals because they generate loads of paper work. and I can see that point.

So we had a great hour and it wasm good to hear that 10’000 votes was good enough to get the Bill passed but they now want to see as many as possible and it will be a great victory.

https://www.change.org/en-GB/petitions/jeremy-hunt-department-of-health-11-days-to-change-medical-history

So please sign the petition and play a part in history and also email to as many as possible lets show the Government that people power makes changes.

Coming to Easter and Decorating -be aware of old Artex old floor tiles lino cornices plaster mouldings pipe lagging old wall boards all could have Asbestos. So Take Five

https://www.youtube.com/watch?v=N-yjmaBlyx0

Rays Blog http://mesoandme.wordpress.com/2014/04/15/tuesday-91/