Living With Mesothelioma -My Diary- Many news items today as so much is going on


A very quiet day today and yet I have had to be in the Den all day. So much typing and Im not a typist but I have had plenty of experience now .

Ray is thrilled that our Web Page has reached Thank you guys and Gals. You have reached 23000 views on our website: in such a short time. We have new plans to launch it on Face book over the weekend as we never thought it would be taken that serios. But even the medical world have congratulated  us which amazed us so maybe we can take it forward as a group help lots to do so thank goodness its going to be a wet weekend  we can stay in and not be bored.

http://onestopmesothelioma.co.uk/

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Mesothelioma UK logo

http://www.mesothelioma.uk.com/information-and-support/

I had a lovely email from liz of Mesothelioma UK who gave me permission to announce —-

Feel free to post on the warriors that Meso uk are working hard to secure funds for a Meso CNS on Scotland now! We will have 9 in post by the end of this year and if we get funding Scotland will be 10. X

Liz Darlison

Great News she works so hard and people dont realise how the Charity works.

I also got am email to find people willing to talk about their stories here in the UK —

I work for the Safety & Health Expo, which is the national exhibition for occupational health and safety in the UK. It runs Jun 17-19 at London ExCeL. We are launching a Health & Safety Week the week of the show, which will be announced onsite by the head of the HSE, Judith Hackett. We are looking to speak to people whose lives have been affected by work-related illness.

We are currently scooping out how we are going to launch it exactly but the following would more than likely be involved:

·         Working with us to get their story on our website

·         Submitting a couple of photos

·         We may request that they answer a couple of questions in front of a camera (once again, nothing too formal)

The objective of the week is to raise awareness of health and safety and the merits of doing it right.

I would greatly appreciate if you could put us in touch with anyone who is relevant to what we are looking for and would be willing to share their story. We appreacaite they may not be feeling very well so we will make sure that this in not intrusive and handled sensitively.

If you are interested pleas email me or put a comment on my blog and I will send you all the details.

I had a lot of Counselling to do today as we have 4 lovely Mesowarriors in trouble which is awful. It is how it seems to go  we warriors do have a emailing group that come to us personally and that do not want to use Facebook. Im pleased I can help as I seem to be able to handle the sadness  and bring calm to a very frightening time.

Our Hospice is closing down some of its work so we have to wait to see how this pans out

 http://www.canterburytimes.co.uk/Hospice-closure-means-care-patients/story-21075176-detail/story.html

‘Hospice closure means we can care for more patients’

By LCrudgington  |  Posted: May 08, 2014

Pilgrims Hospices chief executive Steve Auty says the charity must adapt to secure its future

Pilgrims Hospices chief executive Steve Auty says the charity must adapt to secure its future

 Comments (0)A HOSPICE boss says closing a third of its inpatient beds will mean more people with terminal or life-limiting illnesses can be cared for at home.Steve Auty, chief executive of Pilgrims Hospices, said hospice care was not about buildings but delivering care where people needed it, whether at home, in a care home, a hospital or a hospice.

Speaking to the Times after news of the closure of the 16-bed in-patient unit at the Canterbury hospice was revealed, he said the changes were necessary to allow the charity to continue into the future, when numbers of patients are expected to increase.

Mr Auty, who has worked at the hospice for nine years, said: “There are many more people who will die in east Kent than we, the hospice, can ever cope with.

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“We want to work with health and social care professionals to improve end of life care, and we want to educate and develop those professionals and share best practice with them.

“Irrespective of illness we will stay true to our holistic way of doing things by caring for people’s physical, psychological, social and spiritual needs at the most vulnerable times.”

The closure plan is part of a new strategy for the hospices, developed by senior doctors and discussed with groups of staff for the last year.

It was endorsed by the trustees last month and includes a commitment to developing more education and development programmes.

Several new roles will be created as part of the changes, including an associate director of education and development, a volunteer development manager and a database manager responsible for improving relationships with supporters.

Planned inpatient respite care will also stop, but the 16 bed units at Ashford and Margate run by the charity will remain open.

Mr Auty said: “The strategy has been generated by staff who have the knowledge of providing care.

“The demand is going to increase in two ways, complexity of illnesses and numbers of patients and there is a need for the whole of the health care system to operate in a different way to make sure the care is delivered for an increasing number of people.

“We can’t cope with everybody now, we are not going to cope with everybody in 20 years time.”

And Mr Auty appealed to people to continue to support the charity, which needs £10.5 million a year to run. The changes will cost £500,000 over three years.

He said: “What is important is to maintain support from the community for what we do.

“We still need people’s support to keep going even though we will be operating in a different way.

“It is an emotional time for everybody. But the clarity of what we want to do in the future makes so much sense.

“Hospice care is a philosophy of care, it involves education, training and research. Ultimately it is not about buildings it is about the quality of care and we are still going to do that.”

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I really don’t know as they give such good service and It will mean over working the Community  Nurses

http://www.iatp.org.uk/iatp-weekly-update-blog/

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Introducing IATP wristbands “Raising Asbestos Awareness Together” The wristbands cost £1 each and are raising funds for our 2014/15 Charity AASC  
To order wristbands please mail events@iatp.org.uk specifying how many and preferred colour. 

http://www.curemeso.org/site/c.duIWJfNQKiL8G/b.8578763/k.EF12/Mesothelioma_Resources__Mesothelioma_Podcast_Series.htm

My Trial will be being discussed in the US but it means staying up late I will


On May 14, 2014, at 8 PM Eastern time, the Mesothelioma Applied Research Foundation will be holding a new installment of its “Meet the Mesothelioma Experts” series featuring Dr. Evan Alley of the University of Pennsylvania, who will discuss his new clinical trial available to pleural mesothelioma patients. The clinical trial will look into an agent that would inhibit the PD-L1 protein. Read more on our blog.

Dr. Alley will discuss trial details in an interview with Mary Hesdorffer, Meso Foundation’s executive director and expert mesothelioma nurse practitioner. The interview can be listened to “live” by calling into a conference-call number.

Dr. Alley is the interim chief of the Division of Hematology and Medical Oncology at the Penn Presbytarian Medical Center.

Made possible by a generous educational grant provided by The Edgar Lomax Company.

Rays Blog http://mesoandme.wordpress.com/2014/05/08/thursday-87/

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