A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos Disease -Thanking the Lords and Support Groups that are fighting our corner


Forgive me if we celebrated the wonderful Debate in the House of Lords, by talking about the Mesowarriors Uk, but it was all about them in the House of Lords on Thursday .

We had this Debate– and remember this is my diary and my thoughts,  so you might not always agree with me.

We do aknowledge Mesothelioma Warriors World Wide, believe me and we do fight alongside some wonderful people, but what is happening in the UK is so important,  as in the end we might find the cure for the disease and our government is backing us.

So many are working together around the world to that wonderful goal.

We do thank the wonderful people who are working tirelessly behind the scenes to make sure we do have the 5 million that the Government have promised for Mesothelioma Research and the Centre of Excellence.

The National Mesothelioma Centre will be a collaboration between four leading institutions who have a major interest in the treatment of mesothelioma: National Heart and Lung Institute (NHLI) at Imperial College; Royal Brompton Hospital; Institute of Cancer Research (ICR); and Royal Marsden Hospital. This collaboration will form the hub of the Centre which will engage with all other hospitals in the UK to which mesothelioma cases are referred and treated.

Professor Sir Anthony Newton Taylor, Head of Research & Development at the National Heart & Lung Institute, who made the application for support from LIBOR fines, is working closely with the British Lung Foundation and other charities in order to ensure that experts from across the lung and cancer research community are able to contribute to this important enterprise.

The £5 million grant, which is intended as seed funding, has been profiled over 4 years and will be paid to the National Mesothelioma Centre, once established. The funding will be subjected to standard Grant Terms and Conditions, including a feedback and reporting mechanism, and audit.

That was why the Debate has been talked about this week https://hansard.parliament.uk/Lords/2016-10-27/debates/288D2079-5DD8-44C8-BD07-47F89105D0ED/Mesothelioma

We must make sure it happens and that Mesothelioma does have the money.

Lord Wills, Lord Alton and the others that spoke that night are really behind us as are so many other. IBAS, British Lung Foundation, Mesothelioma UK Asbestos Victims Support Group Forum and many more have really worked hard for Mesowarriors in the UK.

It does feel at last that we have a huge voice and people do listen.

So many people have died with Mesothelioma and the cause has been greed though not banning Asbestos sooner.so it is only right they do look after the victims now and make sure the drugs are found for the treatment we need so badly. We have lost 4 this month in the UK and each death was preventable but worse still I have added, through emails to me and through my blog, and through Patients being recommended to our Face Book Groups, and Twitter over 20 newly diagnosed patients in October.

I don’t like keeping numbers as it reminds us just how bad this disease is.

All the Lords spoke wonderfully about our plight but (please read from the link or see my Blog for 2 days ago ) Baroness Walmsley said it all.

 

  • Asbestos lurks in many strange places, including, as we have heard from the noble Lord, Lord Alton, this very building. My husband and I recently demolished an old cottage on our property, and we discovered that there was asbestos in the floor tiles with which my late mother-in-law had been living for 40 years. We had to have them removed by specialists. In the 1970s, when I lived in an old farmhouse, I used an asbestos product to fill the rather irregular holes that I used to drill in the walls to hang pictures and bookshelves, having no idea that there may be a problem with it. Concerns about the dangers of asbestos were first raised early in the 20th century, but its use was not outlawed until 1999. For the thousands of cases now arising 40 or 50 years after first exposure, it is our responsibility to ensure that they are given the compensation and support they require. Unfortunately, the median survival time for pleural mesothelioma, once it has taken hold, is 12 months from diagnosis, but this time, and beyond for the dependents of those affected, must be made as comfortable as possible for those who need help.

    Over the years, there have been many shortcomings in the handling of asbestos-related cases across the globe, one such case being the fire at the central ordnance depot in Donnington, Shropshire, in 1983. The blaze which released a huge cloud of asbestos into the air has had a huge repercussion which is still being felt today. Paula Ann Nunn, Ellen Paddock, Susan Maughan, Richard George and Marion Groves are just five local people who contracted mesothelioma and unfortunately passed away as a direct result. Mrs Maughan died only last October. Her daughter told the inquest that it took the local authority five days before they told the community so they were exposed to asbestos for all that time. The ash cloud which spread over an area of 15 square miles attracted many small children who played in it as if it were snow which fell in local gardens for days before people were told it was unsafe. We have heard from the noble Baroness, Lady Finlay, how very harmful that could be to those children. My colleague and noble friend Lady Pinnock has told me about many cases in her area of Kirklees, resulting from working for a brake linings factory, long since closed down.

    Mesothelioma is generally resistant to conventional cancer treatment. Long-term survival and cures are extremely difficult, but that does not mean that the mistakes of government and industry alike over the past century should not be paid for by compensation to those affected. The current range of available benefits, both lump sums and long-term allowances, must get to the right people at the right time. The Mesothelioma Act 2014, for which we have to congratulate several noble Lords present today, went a long way to help those who had been unable to access compensation because of the passage of time or a lack of effective record-keeping identifying those responsible. Since 2014, a total of £62.2 million has been awarded. However, of those who were unhappy with the result and requested a review of what they were awarded, 25% had their compensation rate altered—I presume upwards. Given that this illness is still an issue affecting thousands of British people every year and that the nature of mesothelioma’s progress means that time is literally of the essence, it is essential that the correct support is awarded without delay in all cases. Given the significant number of cases reviewed since the launch of the scheme, how do the Government intend to learn from those cases and improve the process so that the right decision is made the first time in as many cases as possible?

    Can the Minister also outline the ways in which the Government are promoting the compensation scheme, so that those most in need are fully aware of the support available? Given the vital work done by the charitable organisation, Mesothelioma UK, and its invaluable lung nurse specialists, do the Government intend to follow its lead and introduce more specialist nurses into hospitals to support patients?

    Finally, to safeguard against mesothelioma cases slipping under radar given the disease’s lengthy latency, are the Government willing to begin actively seeking out those involved in previous incidents, such as the Donnington fire, so as to promote early identification of their disease and to get immediate support to them?

    I will report back when I have been to the House of Lords on 1st November.

    In the mean time I have a scan coming up Monday and the results on Wednesday hence my not being able to sleep. We do worry about our scans as it means maybe another free 2 months to enjoy life or going back into treatment. All we pray for and our fingers are crossed for is a stable scan. Mr Nasty must stay laying down in his benign state. PLEASE !!!!

 

 

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