Living With Mesothelioma -My Diary- A call from the Royal Marsden, The power of the Mind to heal -Interesting !!

good morning

 

 

 

 

 

 

 

 

 

 

The weeks are going by and we have been so lucky with the summer so far. Once again though treatment is holding my life up as we really should be away and traveling, although if it wasn’t for treatment I wouldn’t be here to enjoy the life I have,

I wish I could have just one day where Mesothelioma wasn’t on my mind. It is a word that I didn’t know and now it has been in my life everyday for over 5 years.  It evades so many lives and turns them upside down.

We had a good day yesterday and I stayed awake longer. The pains are naughty though. I only write about pain so as to log what is going on and so that it is recorded for others to read. Its no good making out all is good when its not. Thats no help to others is it.

I had a phone call out of the blue yesterday, I thought it was going to be another survey one that we keep getting but no it was the Research Nurse from the Marsden. She said I go on her day off so she is missing me. I told her Im coping well but I have pain on the second week and flu like symptoms although this week is better.

She said that the team talk about me every Wednesday and that she has good reports on me. That everything on the computer is good. See its amazing that people think the NHS is doing nothing for them but things are going on in the background all the time.

I ask her if the Trial is closed as I had been told it was. She said they have recruited from all cancers so yes they are not recruiting anymore, they will start again later on though. I suppose that Phase 1 has to be controlled as to how we are all doing as we are the unknown at this point.

I said I have all my faith in the drug. I talked about living longer than the 3 months and that really they cant predict a patient’s spirit.

No one can know the power of the mind.

I found this interesting link

http://www.newscientist.com/special/heal-thyself

Even if the link between religion and better health is genuine, there is no need to invoke divine intervention to explain it. Some researchers attribute it to the placebo effect – trusting that some deity or other will heal you may be just as effective as belief in a drug or doctor (Philosophical Transactions of the Royal Society B, vol 366, p 1838). Others, like Paolo Lissoni of San Gerardo Hospital in Milan, Italy, who did the lung-cancer study mentioned above, believe that the positive emotions associated with “spirituality” promote beneficial physiological responses.

http://www.newscientist.com/article/mg21128272.100-heal-thyself-know-your-purpose.html#.U7zYxPldVuY

I talk about the core I feel through the centre of my body, it still is happy not a fear of death. Im still well enough to live and can live a active life. She was pleased with me and said she will keep in touch.

We talked about my side effects and pain, sleeping all the time and she said it has all been noted.

So that was a nice surprise, you feel in touch and that helps so much.

The day had been very good and we got out in the sun but the clouds were rolling in as forecast and the skies got blacker until the heavens opened, as promised. So it was a wet evening.

I did get all the washing done and dried. Louis had been ill on the mat in the night so I had to wash them. So unusual for him to be sick. He seemed ok the rest of the day and enjoyed his usual run around with his ball in the park.

we had passed a lady riding a horse on the way and so while we were walking around the park I could see her over the bushes coming to where we were. i lifted Louis up to make sure he didnt bark but the lady said not to worry. i put Louis down again and he took no notice. Amazing as it was a large horse.

Victory Wood
This 141 hectare site was purchased by the Woodland Trust in 2004 to be the flagship wood celebrating the bicentennial of the battle of Trafalgar.
The site has seen extensive replanting of the once arable land and the introduction of a considerable nautical theme with  a number of interpretative structures (statue of Nelson, Victory Footprint, Chain Link and Trafalgar battle plan in trees) themed around the Battle of Trafalgar but which are linked to the importance of trees/woodlands and how different tree species were traditionally used.
The real highlight of a visit to Victory wood however are the  breathtaking views across the Kent coastline and the nearby Blean Woods from the long ridge at the southern end of the site.
The Wood has a good network of permissive paths across it and these can be accessed on foot or form the car park in the North West of the wood

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Rays Blog http://mesoandme.wordpress.com/2014/07/08/tuesday-101/

Living With Mesothelioma -My Diary- My wonderful Whitstable and spent the day watching the Tour de France

Sunday and Monday have rolled into one. Im very bored so we keep going out in the car. Sunday was great walking in Herne Bay and the Tankerton but then we chilled out.

The most exciting thing was described by Ray —-While we were out Saturday we had all the car windows open it was so hot.  At one point something hit me on the head. It made me jump. Mavis  said whats up. Something just hit me on the head. But  we couldnt see anything and it was quickly forgotten. Today when we took louis to the park mavis suddenly shouted out wasp  there is a wasp in here. I braked but mavis was ahead of me she had already flung the door open good job I had almost stopped as we were passing a heavy fence. But sure enough there was a wasp crawling  along the dashboard. But with a quick swipe up the backside she had helped it out the door. I wonder  how that got in here she said. I said I recon that is what hit me on the head yesterday and its been  shut up in here over night.—

We finished off with a walk in Louis park as he is off lead and chases the ball there.

Yesterday we had to call in and get the polish kit that they had forgotten to give us and then we went to Tankerton

Pictures of Whistable have been published and its why I love it here. So quaint and natural and hasnt really changed in all the years. You cant modernize everything it would just spoil a wonderful place..

http://www.canterburytimes.co.uk/pictures/PHOTOS-minute-walk-Seasalter-Beach/pictures-21312516-detail/pictures.html

Whitstable (3)

I never regret coming here and the 14 years have been so happy despite my illness. Im sure it has played a huge part in my survival for so long.

Then again yesterday I received this link    http://www.buzzfeed.com/kimberleydadds/glorious-places-you-simply-must-visit-in-kent

Our sunsets are famous here and Turner used to paint them.

http://www.william-turner.org/biography.html  A lovely read

Possibly due to the load placed on the family by these problems, the young Turner was sent to stay with his uncle on his mother’s side in Brentford in 1785, which was then a small town west of London on the banks of the River Thames. It was here that he first expressed an interest in painting. A year later he went to school in Margate on the north-east Kent coast. By this time he had created many drawings, which his father exhibited in his shop window.

Thats why they built the Turner Contemporary at Margate http://www.turnercontemporary.org/visit

 

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We really enjoyed watching the Tour De France as it has sped through the UK. The turn out to watch it has made us proud. Considering it was a Monday as they sped through Essex to London the streets were full of people encouraging them on.

The third stage of the Tour de France has finished in London with a second stage win for German Marcel Kittel.

The 96-mile (155km) route from Cambridge to the capital saw tens of thousands of fans lining the roads.

It finished on The Mall after taking the 197 riders past Cambridge’s historic colleges, through Essex and Epping Forest and on to London.

The riders will now leave the UK for stage four which begins at Le Touquet-Paris-Plage in France on Tuesday but I bet they wont get anything as good as the Welcome that was given here -Well done Uk

http://www.bbc.co.uk/news/uk-england-london-28182998

 

The last couple of days I have been in a thinking mood and have pulled myself down as now and again the Meso and the fight to stay positive gets hard.

Sleep is getting disturbed and Im awake again 3.30am the pains are felt more in the ribs like a vice is crushing my left lung. Im told this is a side effects along with fluid buildup in my legs, the ankles are so puffed until I sleep it off at night so as Im awake early that hasn’t been able to drain. So the feeling of bloating goes on.

My ribs on the left hand side bulge and are a different shape to the right. The left shoulder is pulled in more so all clothing slips of the shoulder.

The Selfie shows that

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I feel a mess and even though I dont eat much My weight goes up still. All this has been recorded at the Marsden.

I should really up the exercise and try to get to grips with fitness. I just wish I could go back 5 years and be the same person I was then.

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

 

 

Living With Mesothelioma -My Diary- Are we losing our NHS just as it reaches its 66th Birthday ???

After a wet start yesterday the weather got better and better. It is so warm that we keep showering. Very humid.

We lazed about watching telly. I thought it was Sunday and wondered why the Politics programme wasn’t on.  Ray thought it was Friday, very strange.

So we went out after lunch to the Range where Ray took Louis for a walk and I went shopping. Poor Louis was to hot even with all the windows open and the wind coming in as we drove along. No wonder dogs cook in hot cars.

You really cant leave a dog in a car it is so cruel and so dangerous.

Dogs die in hot cars

 

 

 

 

 

 

 

 

 

 

http://www.rspca.org.uk/adviceandwelfare/pets/dogs/health/dogsinhotcars

Ray cant get his phone to work through the car so he is being very frustrating driving along talking to this lady who wants to dial,connect or delete.

He tried it so many times he drove me crazy.

He has to go back to the garage to have some lessons.

I enjoyed eating my watermelon and local cherries and had a snooze.

The side effects are showing again. My nose is running more and more and the pain in my ribs under my left arm and into the shoulder blades is naughty. The bottom of my ribs are sore.

So its on the Paracetamol during the day again.

Still nowhere as bad as Chemo and that really counts with me.

My Peripheral neuropathy is really improving. My feet are really easier to wiggle and the cushioned feeling has gone. My walking is not good and the fear of falling over never leaves me but that is down to confidence now.

So all in all things are very good on the trial.

nhs birthday

 

 

 

 

 

 

 

Yesterday the NHS’ is 66 years old!

Photo: It is worth fighting for. When it is gone, it is gone!!

Happy birthday to an outstanding health care system which deserves to be celebrated – providing excellent care for patients and a workforce that continually demonstrates great resilience in challenging circumstances.

Check out the NHS’s interactive timeline history and explore how it has evolved from when it started out in 1948.

Be proud of our NHS.

http://www.nhs.uk/Tools/Pages/NHSTimeline.aspx

But now it is all threatened with Privatisation.

Something is happening to our NHS and it has been so secretive so far. We have been asked our veiws on the subject and I dont think the General Election next year will help us as Both parties are gunning for the privatisation.

http://www.huffingtonpost.co.uk/2014/07/03/ttip-eu-us-trade-deal-unite-union_n_5554227.html?1404384313

The National Health Service is facing a “unique risk” of having its services privatised if a secretive major EU-US trade deal goes through, trade unions have warned.

Unite claimed that the deal between the European Union and the United States, known as the Transatlantic Trade and Investment Partnership (TTIP), is the result of “secret” negotiations between US officials and the European Commission.

Unite general secretary Len McCluskey said: “David Cameron has shown that he’s willing to go to Europe to defend bankers’ bonuses, now he must use his powers to defend our cherished NHS.

“US health companies will even have the right to sue a future UK government in secret courts if politicians try to reverse privatisation.

“The most significant effect will be felt in health, enabling US healthcare multinationals and Wall Street investors to sue the UK government in secret courts if it attempts to reverse privatisation.

“David Cameron can exempt the NHS from these trade negotiations. Unless the Prime Minister acts, bureaucrats in Brussels and Washington will make the sell-off of our NHS irreversible.”

http://labourlist.org/2014/06/labour-to-force-vote-on-nhs-privatisation-as-cameron-warned-nhs-could-collapse/

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Labour will back a Clive Efford MP’s Private Member’s Bill, which attempts to repeal the Tory competition rules now at work in the health service by rewriting the rules that force “market tendering” of services. The bill will be debated in the Commons in November and Labour plans to use the next few months to set up a dividing line between Labour and the government parties by challenging them to back the change.

A nursing friend says —We already have GP surgeries being run by private companies to the detriment of patient care. Staff of these surgeries are being reduced including doctors and nurses. I have a friend who works locally as a practice nurse and is seeing first hand the effects on staff and patients of the creeping privatisation.

All this is very worrying for us patients and the next year will be a very worrying time to see where all this is going.

Another fight on our hands and one I will back.

Rays Blog http://mesoandme.wordpress.com/2014/07/05/saturday-83/  A bit of shopping. We did a 26 mile round trip just get a pack of toilet rolls. It was mavis`s idea to get a ride in the new car. Ive spent ages trying to get the bluetooth to work on my hone. I cant do it.

 

 

Living with Mesothelioma -My Diary- Mesothelioma Awareness Day today and the weather has been wonderful here.

Wow it was hot today the temperature went up and up and it was 31C in our Lounge this afternoon.

No wonder we wilted . I knew we had to get out or i would just sleep and sleep after lunch.

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Herne Bay with wonderful blue skies

My boy and me x

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We travelled back to Tankerton where people were buying Ice creams.

We bought a great watermelon and cherries.

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Had to do a Selfie

So a very busy ride home as it was school home time as well as Caravan weekenders time. All the sites around were filling up so I do hope the weather lasts but the forecast is for a wet one.

Louis went to bed when we got in and slept the heat off bless him.

Today was Mesothelioma Awareness day and around the country people met up and released Doves. But there is one write up I just had to reblog. What a great round up of the day Thank you everyone for all your hard work

 http://davidalton.net/2014/07/04/action-mesothelioma-day-manchester-speech-july-4th-2014-time-to-provide-adequate-resources-to-find-a-cure-for-a-disease-which-will-claim-more-than-50000-british-lives/

Action Mesothelioma Day – Manchester Speech – July 4th 2014 – Time to Provide Adequate Resources to Find a Cure For A Disease Which Will Claim More than 50,000 British Lives

POSTED ON JULY 4, 2014 UPDATED ON JULY 4, 2014

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Speech by Lord Alton of Liverpool at the Action Mesothelioma Day 4 July 2014 Manchester

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It is a pleasure and a privilege to join you in Manchester on Action Mesothelioma Day – to stand with you in Albert Square, and to watch the release of the doves as they flew above this beautiful Town Hall.

You’ll forgive me if I begin by paying tribute to the late Labour Member of Parliament for Wythenshawe and Sale East, Paul Goggins, who was not only a parliamentary colleague but a man I counted as a dear friend. He was also a tireless supporter and champion of those affected by mesothelioma. You have heard moving tributes to him in Albert Square from North West parliamentary colleagues – not least from Andy Burnham MP, the Shadow Health Secretary.

Rt.Hon Paul Goggins MP speaking at Action Mesothelioma Day in 2013
Rt.Hon Paul Goggins MP speaking at Action Mesothelioma Day in 2013

For Paul’s family and his friends his death at Christmas last came as a shock and a terrible loss. Perhaps it is a small link to the families gathered here today, also mourning the loss of loved ones, and whose presence, like that of Paul’s colleagues, and especially his successor, Michael Kane, ensures that the baton passes to new hands and that loss is channelled into positive actions. Let me also say, in parenthesis, that without the work of Tony Whitston, and others in your support groups, we in both Houses of Parliament would not have had the battery of arguments and case studies which we have been able to deploy. Many of you have written to me, and your profoundly moving stories have made a great impact on me and on many of my Parliamentary colleagues.

As the Chair has rightly said, your presence today is a vivid reminder to all politicians that much still needs to be done to help mesothelioma sufferers – most of all to provide funding for mesothelioma research.

 

 

 

Andy Burnham MP - - the Shadow Health Secretary.
Andy Burnham MP – – the Shadow Health Secretary.

Perhaps the most important thing we have heard today is the pledge given by Andy Burnham that should he be Health Secretary in an incoming Labour Government he would ensure that the insurance industry is required to support mandatory research to develop cures for mesothelioma and that an incoming Government would match that support. That is as welcome as it is important.

I think it is also important to say first why I, and many other parliamentarians, are so concerned about those who suffer from mesothelioma. While I served in the House of Commons for a Liverpool constituency I met far too many grieving relatives who had lost loved ones to this disease.

Mesothelioma is an occupationally-related disease. Simply put, men and women went to work and they were negligently exposed to asbestos when it was known that asbestos caused great harm. In 1965, the Newhouse Thompson report provided shocking evidence that a brief exposure to asbestos could result in mesothelioma fifty five years after first exposure.

 

 

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Yet, scandalously, and with utter contempt for life and health, men and women continued to be exposed to asbestos with little or no protection for decades after the Report was made public. Nearly 40,000 people have died from mesothelioma from past exposure to asbestos, and some 56,000 will suffer from mesothelioma years to come. The UK has the highest incidence of mesothelioma world-wide. Society owes a great debt to those who went to work, often in hard, heavy industry, and built the economy of this country, only to suffer terrible consequences.

meso UK

That is why I, and others, would not accept the Government’s decision in Part 2 of the Legal Aid Sentencing and Punishment of Offenders Bill to make mesothelioma sufferers pay legal costs when they claimed compensation.

I successfully moved an amendment in the House of Lords to exempt mesothelioma sufferers from paying legal costs, and when the Commons sent it back, the Lords voted for it again and our cross-party alliance defeated the Government for a second time and sent it back to the Commons. In the Commons, Paul Goggins MP led the debate, and together we secured an exemption for mesothelioma sufferers pending a review and a report on the likely effects of legal costs on mesothelioma claims.

Regrettably, the Government have now published their report and intend to end the exemption. But that battle isn’t over yet. I recently wrote to the Justice Minister, Lord Faulks, saying that the review was premature and wholly inadequate. The Government will be challenged on its decision.

Although we must continue to insist on proper and commensurate support for those families blighted by the curse of this disease, I have also been critical of the lamentable and paltry sums of money which have gone into finding the causes and cures for mesothelioma.

So when, last year, the Government introduced the Mesothelioma Bill in the House of Lords to set up a payment scheme, funded by insurers, for mesothelioma sufferers who could not trace their insurers I determined that something must be done to secure funding for mesothelioma research.

Because mesothelioma affects so many people, the insurance industry has had to pay compensation in thousands of cases, and must continue to do so for decades to come. Consequently, mesothelioma has become a battle ground as insurers try to reduce their liability to pay compensation. When the insurance industry won their legal battle to end compensation for the asbestos disease, pleural plaques, they saved millions of pounds. The Government did not reverse the legal decision and some insurers agreed to pay £3 million to help fund mesothelioma research – a very welcome gesture. The British Lung Foundation has responsibility for this research funding and has been doing a fantastic job supporting essential research, but that money has now been used up.

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The insurance industry could reduce their liability for compensation more successfully if, instead of court challenges, they continued to donate money to mesothelioma research. If better treatment and a cure could be found, they would pay far less in compensation. If all the employer liability insurers were to pay just a small amount to mesothelioma research each year that would make a huge difference, and, if the Government matched that funding, what a difference that would make!

With that in mind, I moved an amendment to the Mesothelioma Bill in the House of Lords which would require every employer liability insurer to pay a small annual levy to fund mesothelioma research. During the debates on the Bill I received tremendous support from The British Lung Foundation and from many members of the Lords who are eminent physicians.

• If successful the amendment would have a secured a sustainable and fair future funding system by charging a small levy on the 150 or so insurance firms active in the Employers’ Liability Insurance market, and a small contribution from each could raise a vital £1.5 million each year for mesothelioma research – small sums which would make a huge difference to the future of mesothelioma research in the UK, and could potentially lead to a cure which would save tens of thousands of lives.

Indeed, it is true to say the Minister, Lord Freud, said he felt like adding his name to the amendment, but complained that he ‘had hit a brick wall at every turn’ when trying to find a way forward. To which I responded: “It is Parliament’s job to demolish such brick walls”.

• Well, we did not demolish the brick wall, although we came within a whisper of doing so.

• We lost by just seven votes. .

Kate Green, MP for Stretford and Urmston, led the Official Opposition in calling for mesothelioma research and Tracey Crouch MP and many of her Conservative colleagues broke ranks and called on the Minister to agree.
Kate Green, MP for Stretford and Urmston, led the Official Opposition in calling for mesothelioma research and Tracey Crouch MP and many of her Conservative colleagues broke ranks and called on the Minister to agree.

Tracey Crouch MP
Tracey Crouch MP

 

 

 

 

 

In the Commons, Kate Green, MP for Stretford and Urmston, led the Official Opposition in calling for mesothelioma research and Tracey Crouch MP and many of her Conservative colleagues broke ranks and called on the Minister to agree. There is support for mesothelioma research across all parties and throughout the many constituencies affected by mesothelioma. Tracey Crouch’s constituency of Chatham and Aylesbury has high levels of mesothelioma sufferers caused mainly by working on ships in Chatham dock yard which contained an enormous amount of asbestos. This horrible disease strikes all over our country and in every constituency and many walks of life.

Mesothelioma is no respector of constituency boundaries
Mesothelioma is no respector of constituency boundaries

• In response to considerable and mounting political pressure the insurance industry wrote to the Minister on the day of my debate, pledging £250,000 to The British Lung Foundation and agreeing to come to the table to talk about long term funding options. This was a crucial step forward, but it was also a very easy token gesture for the industry to make. In a multi-billion pound industry, £250,000 is a drop in the ocean. Sadly, in terms of research funding, it does not go far either. At the time I was concerned that an agreement to discuss funding options is an awfully long way from an agreement to provide funding. And I’m disappointed to say that since then the industry has continued to stall at every turn.

• Ministers have put considerable personal effort into looking to find ways to encourage voluntary funding from the insurance industry. This has included facilitating ongoing meetings and negotiations between the Association of British Insurers and The British Lung Foundation, yet whilst this is valued – it is not enough. The Government must now go one step further, and make a commitment to legislate in order to make this funding compulsory.

In Parliament we extracted from the Government a commitment to do four things;

First, the National Institute for Health Research were told to commission the James Lind Alliance to bring together patients, carers and clinicians to set priorities for research. That work has now been done and we await the report.

Secondly, the National Institute for Health Research were told to make mesothelioma research a priority area, by issuing a ‘highlight notice’ to the research community.

Thirdly, the National Institute for Health Research were told to make available their research design service to help applicants develop good research proposals; and.

Fourthly, the National Institute for Health Research, together with the Medical Research Council and Cancer Research UK, were told to bring together researchers to develop new research proposals. That has been done.

Is it enough? NO. Earlier this year I put down a Private Members Bill for a levy on insurers for mesothelioma research. Initiatives to achieve this end go wider than Parliament. The British Lung Foundation is in active discussions with the insurance industry now about committing to long-term funding for mesothelioma research. The insurers are to give an answer soon, and we expect them to say YES.

Let us be clear. We are not asking for the World. Just small sums from the insurance industry would make a huge difference to the future of mesothelioma research in the UK and could potentially lead to cures, saving tens of thousands of lives. There are an estimated 150 insurance firms: a small contribution from each could raise a vital £1.5 million each year for research.

Are levies on industries unheard of? No. Here is a list of just some of them:
The Gambling Act levy
The Betting, Gaming and Lotteries Act levy
The HGV Road Users Act levy
The Fossil Fuel levy
The Gas Levy Act 1981
The levy on the pig industry to eradicate Aujeskey’s disease

There is no reason in principle why an employers’ liability insurance levy should not be supported.

We should remember that the employers’ insurers’ liability market is a captive market: i.e. insurers enjoy a guaranteed market because employers must, by law, take out employers’ liability insurance. Unfortunately, for decades, insurers neglected to keep employers’ liability insurance records so that hundreds of mesothelioma sufferers lost over £800 million pounds in compensation. This loss to mesothelioma sufferers was a windfall to insurers. A small levy on insurers now is hardly much to ask, especially as it is in their interest to support mesothelioma research.

In Parliament I argued that “this is not about throwing money at problems. That is certainly something I have eschewed throughout the whole of my time in politics. You have to demonstrate the case and there is a case here. If 56,000 of our countrymen are going to die of this disease over the next 30 years or so, we have to find adequate resources to tackle mesothelioma…”

So what has been achieved so far in this campaign?

There’s an old saying that the best time to plant a tree is twenty years ago; the second best time is now.

Clearly, it would have been better if, twenty years ago, significant resources had been put into finding the cause and cures for mesothelioma but the second best time is now – – certainly not twenty years from now.

• And we can take some comfort that over the last two years there has been growing political support for the need for the insurance industry to fund mesothelioma research. The Government’s duty to intervene to make this a reality has also been established.

• New researchers from other areas of therapy have started taking an interest in mesothelioma, bringing with them new expertise and insights. Europe’s first mesothelioma tissue bank has been created to collect and store biological tissue from mesothelioma patients for use in research; and work is being funded to identify the genetic architecture of the disease.

• However, as all the original funding has now been allocated and new funding is desperately needed to continue this vital work, it is imperative that we keep up the momentum of scientific discovery if we are to have any chance of finding a cure for this devastating disease. Not twenty years from now.

The Independent newspaper

The seriousness of the situation was revealed only yesterday when The Independent newspaper reported that fresh figures from the Health and Safety Executive showed a 10% increase in mesothelioma cases, due largely to a greater number of male deaths aged 65 and over. The British Lung Foundation say the numbers will continue to rise until 2020. The newspaper reported the demands of scientists and doctors for more money to be urgently pumped into research.

So where does this leave us?

• Although there is no doubt that the importance of mesothelioma research has been accepted in the highest quarters of Government and in the research community, and action is being taken to develop bids for important areas of research, I am gravely disappointed that as I stand here today, that we have still not received a long term funding commitment from either the Association of British Insurers or individual insurance companies.

• The British Lung Foundation tells me that negotiations have all but come to a standstill. We had expected a definitive answer from the industry in June – sadly all we have had is a “will be discussed further in July”.

• There is not long left of this Parliament for the Government to act. I believe we must do all we can, both as campaigners and parliamentarians, to put pressure on the Government to bring forward a legislative solution.

• There is strong support for mesothelioma victims across the political spectrum – but we need to do even more to ensure that the Government listens.

I know that in the last couple of weeks The British Lung Foundation wrote to all parliamentarians urging them to write to the Minister, and so far nearly 20 MPs and peers have taken action – including the former head of the British Navy, Admiral Lord West, who has pledged his full support to the campaign.

On top of this, an Early Day Motion tabled 2 weeks ago by Tracey Crouch MP, already has over 50 signatures. It calls for “the establishment of a long-term sustainable mesothelioma research scheme funded by the insurance industry.”

• The British Lung Foundation has put out an urgent call to arms to all of their supporters, urging them to write to their MP as a matter of urgency – I’d encourage everyone here to take the action if they have not done so already. We need to ensure that as many politicians as possible make representations to Ministers. The Government needs to understand that this issue will not go away until the insurers do their part towards tackling this horrendous disease.

• For my part, I plan to re-table my Bill and I hope that a Member of the Commons will also table it there and, if we still have no resolution, I will help coordinate a cross party parliamentary delegation to appeal directly to the Minister in the autumn.

• Until then, I will continue to work with colleagues across Parliament to remind the Government, day in and day out, of their duty to step in and stand up to the insurance industry, and to legally compel them to fund mesothelioma research if the industry will not fund it of their own accord.

Let me end with some words from Nelson Mandela. He said: “Our human compassion binds us the one to the other – not in pity or patronizingly, but as human beings who have learnt how to turn our common suffering into hope for the future.”

Today is about hope for the future born out of past suffering. Hope and compassion, yes, but it is also about justice.

You who are gathered here today have understood what the poet, Philip Larkin, meant when he wrote that “We should be careful of each other while there is still time”. You have admirably demonstrated what it means to show care for one another.

Your Action Mesothelioma Day appeals in Manchester, which have raised over £100,000 for mesothelioma research, and the efforts of the other asbestos support groups which have also engaged in tremendous fund raising efforts, have been a practical way of being careful for one another, showing compassion and focused generosity.

In many respects you put the industry and Government to shame. But, research funding cannot be left just to families affected by mesothelioma.

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Today, all of you have made a public call for much improved mesothelioma research funded by insurers with match funding from the Government. It is a call for justice.

And you have been joined by all of the asbestos support groups in the UK who have sent out a rallying call to Pledge to Beat Mesothelioma which you have all signed up to.

Today, I can say that I, and my Parliamentary colleagues, will continue to fight for funding for mesothelioma research. With your help, and with the help of all those who are joining together to promote ACTION on Action Mesothelioma Day throughout the UK, we will succeed.

Thank you.

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Living With Mesothelioma -My Diary- Action Mesothelioma Day 2014 -Good Luck

Yesterday was the day we collected our Red car so it was very exciting, and yet Im so silly and get very attached so I was so sad to say goodbye to our Sirion

Daihatsu Sirion SE AUTOMATIC

She had been a super little car but we needed a bit more power and a younger car to journey to the Royal Marsden.

So we collected the Kia and had a drive around for Ray to get used to her. We called in at Tesco and Ray parked as far away from other cars as possible.

When we took Louis to the Park he just  didn’t seem to notice he was sitting in a new car and when we finished walking around the park he did hesitate and ran to another silver car that was parked.

We called him and said “no this red one” where he ran back and jumped straight in.

That was it the weather was so hot and I fell asleep. I hate all this sleeping Im doing.

The side effects are  bearable as the pains in the lung are kept low key by the Paracetamol. My nose is running again but the flue like symptoms are not as bad as last time.

A letter in the post from the Marsden was open very quickly and it was an appointment for my scan 11/8/2014. I hunted my diary and yes great they have arranged it on a monday when Im there for my drug.

How different to my Local hospital that they the different departments have got together and matched up.

This will be a very interesting scan as we are all watching to see if the trial is going to shrink the Meso.

Today is Mesothelioma Action  Day 4th July where many support groups will be creating Awareness through out the country of the disease.

http://www.asbestosforum.org.uk/actionMesoDay.asp

This annual event was inaugurated in 2006 to raise awareness of mesothelioma and to promote an Action Mesothelioma Charter which can be found on this link. Each year, events are organized by asbestos victims support groups in cities throughout the UK.

Action Mesothelioma Charter

We, the undersigned, believe that:

Mesothelioma patients and their families have a right to:

  • a speedy and accurate diagnosis, supported by a Multi Disciplinary Team discussion;
  • good quality information from a variety of sources available in different media and languages;
  • support of a suitably qualified nurse and other Multi Disciplinary Team members throughout their illness;
  • be considered for the best possible treatments available with the support and input of a Multi Disciplinary Team;
  • have up-to-date advice on benefits and help in applying for them, and receive prompt payment of benefits;
  • have legal advice and guidance from a firm of solicitors experienced in mesothelioma claims;
  • guidance on end of life decisions and care at home;
  • provision of a consistent nationwide service from coroners using a clear and open process with a maximum case length of three months.And call upon the Government to:
  • have mesothelioma made a national priority by the Cancer Tsar;
  • fund good quality research, alongside other national bodies, on mesothelioma with a view to improving diagnosis, treatment and outcomes for patients;
  • support the production of clinical Guidelines on the best practice of diagnosis and management of mesothelioma;
  • ensure the Health and Safety Executive vigorously enforce existing regulations on asbestos.And call upon all employers to:
  • prevent future exposure to asbestos by providing a safe working environment with all necessary equipment to protect employees;
  • work with unions and individuals to ensure enforcement of current regulations to safeguard all employees;
  • identify all asbestos in their properties and organise its safe removal where practical or necessary when work is being carried out.

Mesothelioma is a malignant lung disease which results mainly from exposure to asbestos. Someone dies every five hours from mesothelioma in the UK.

Good Luck to all the support Groups around the country

Rays Blog http://mesoandme.wordpress.com/2014/07/03/thursday-93/

Living With Mesothelioma -My Diary- Just a lovely summer s day -Our Local Medical Centre is to expand

Had a lovely sleep to 6.30 which was so good to get up a bit later that 3.30am.

The sun was up and the seagulls were flying in for breakfast before they went onto the beach for the day.

So a leisurely breakfast and pottering around the housework saw us through to lunch.

Louis waited for us to finish and then we went to his park for ball throwing.

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It was lovely and the bees were all working hard in the clover and rabbits were running around all so  very summery.

Back home the afternoon  was very quiet just relaxing and letting the drug work was a good idea.

A video on Facebook put on by Hilda Palmer was very interesting to watch

Privatisation of the NHS: Allyson Pollock at TEDxExeter
This talk was given at a local TEDx event, produced independently of the TED Conferences. The 1948 Act establishing the NHS gave the Secretary of State for H…
Im so pleased to present this story as this is what was discussed in our Golden Pathway meeting for GPs to be able to sort earlier diagnosis. This is just up the road from us -A great thing for East Kent and we need more of these walk in clinics to help A&E as local people at the moment are swamping A&E with minor problems —Something has to happen
EXPANDING: Estuary View medical centre in Whitstable will take on at 13,000 more patients for outpatient clinics

THE medical centre at Estuary View is set to expand.

Board members of the East Kent Hospitals University NHS Foundation Trust gave their approval on Friday for 19 new outpatient clinics to be introduced at the centre in Boorman Way, near the busiest gateway into the town.

Approximately 13,000 patients who would have travelled to Canterbury or Margate for appointments will use the centre instead.

To cope with the increased number of patients, the centre will have to extend its hours to include early mornings, evenings and weekends.

The trust said it would be improving bus services too, a move which has been welcomed by city councillor for the area, Jean Law.

She said: “I think there will be lots of benefits for the people of Whitstable.

“There are people who are sceptical and don’t like change, I know that.

“Some people will find it difficult going there because of the buses, but they are trying to alleviate that problem and trying to address it.

“If there is going to be change, it has got to be the best for everyone and those concerns must be addressed.”

The plans have proved controversial as patients from Faversham and Herne Bay needing outpatient clinics will be expected to travel to the outskirts of Whitstable..

A spokesman for the trust said: “We currently hold approximately 7,000 outpatient appointments a year on several sites on the North Kent Coast.

“Through earlier, later and weekend appointment slots and offering a wider range of clinics we expect to increase the number of outpatient appointments at Estuary View Medical Centre to 20,000.

“The wider range of clinic times and extra bus services will ease pressures on car parking whilst helping people find more convenient appointment times.”

The new outpatient clinics at the medical centre will include breast surgery; colorectal surgery; dermatology; endocrinolog; ear, nose and throat; gastroenterology; general surgery; geriatric surgery; gynaecology; nephrology; obstetrics; orthopaedics; rheumatology; thoracic medicine; trauma; urology; vascular surgery; pre-assessment and speech and language therapy.

Trust chief executive Stuart Bain said: “We have listened to what people have said and responded by investing £455,000 into better public transport links and offering a wider range of more convenient appointments.”

Today (Wednesday) the NHS Canterbury and Coastal CCG will meet to discuss the plans.

The body of GPs looks at health services and who should provide them.

A CCG spokesperson, said: “The decision ultimately rests with the trust.

“But we wanted to be part of the consultation so we could listen to people’s views first hand and take this into consideration as part of our community services review.

“There will be a further opportunity for people to have their say on community services at our consultation events due to take place in September.”

The Estuary View Medical Centre has declined to comment until a final decision is made.

Rays Blog http://mesoandme.wordpress.com/2014/07/02/wednesday-94/

 

Living With Mesothelioma -My Diary- A lovely hot summers day means local strawberries are divine

3.30am wake up again. Went out into the garden as dawn was breaking and the world was so quiet.

All the neighbours asleep. shhh!!

Louis had a walk around but then looked at me with disgust  and went in to go back to bed.

I did get another hour on the settee though.

Im quiet comfortable but as the day goes on the left side gets painful. So take paracetamol and write it in my diary.

I haven’t been sick this time so thats an improvement.

All the housework done and I coped I do feel stronger at last.

If I sit down though I drop off to sleep so I do like to keep busy.

We went shopping in Marks and Sparks. I have bought food I really fancied and shut my eyes to the cost. I have to get my eating sorted.

Although I went and cooked roast chicken with stuffing for dinner and that was very nice. Fresh local strawberries yogurt and meringue nest so today I have eaten OK.

strawberry

The sun has shone all day and its been very warm.

http://www.jac.co.uk/index.php/research-a-insight/10-articles/122-digitising-the-nhs-by-2018-one-year-on-techuk-report

I had missed this when it was published but this is what East Kent is hoping to achieve and through this we will have a National Database -Brilliant

 

In January 2013, the Secretary of State for Health Rt Hon Jeremy Hunt set the challenge for the NHS to “go ‘paperless’ by 2018, to save billions, improve services and help meet the challenges of an ageing population.”

In March last year, techUK (formerly known as Intellect) published its response to the Government’s announcement to become paperless by 2018, including the three underpinning principles they identified as key to its success; capturing, sharing and using information digitally.
A year on, techUK have reviewed the progress that has been made by Government and the NHS; highlighting areas of success, but also challenges that still need to be addressed in order to meet the targets set for 2015 and 2018. techUK has also provided recommendations for how the agenda can move forward and deliver a truly paperless NHS for users, buyers and suppliers of health and social care solutions and services.

Rays Blog

http://mesoandme.wordpress.com/2014/07/01/tuesday-100/