chris

 

In collaboration with the MKMRF and the BLF, Mesothelioma UK are delighted to invite expressions of interest from lung cancer multi-disciplinary teams from the North East of England/Tyneside interested in developing a Mesothelioma Clinical Nurse Specialist post within their existing team.

Mesothelioma UK, the National Macmillan Mesothelioma Resource Centre was established in 2004with financial support from Macmillan Cancer Support. Additional sponsorship was secured from the legal and pharmaceutical industries and a generous donation from MKMRF until the centre launched its own charity in 2009 and since that time the servicesprovided by the centrehave gone from strength to strength.

As a professional, organised and respected charity Mesothelioma UK seeks to provide impartial up-to-date support and information and promote the development of specialist health care practice and research to improve outcomes and experience of care.

Establishing a network of nurses experienced, knowledgeable and committed to Mesothelioma has been a key objective to meeting the centres vision.

A Mesothelioma Nurse Action Team (MNAT) was established in 2008 with representation from across the UK. Team educational events are held twice a year, an online community of practice hosted by Macmillan Cancer Support acts as a dedicated mesothelioma information resource for all members and an email hotline ensures MNAT are kept up to date with all matters related to mesothelioma.

In 2010 through the Royal Marsden School of Nursing and Rehabilitation an online masters or degree level module, Mesothelioma Practice in Cancer Care was launched. http://www.royalmarsden.nhs.uk/education/school/courses/pages/mesothelioma-practice-cancer-care.aspx Over 50 health care professionals from around the world have completed the module which was recipient of the 2011 Excellence in Oncology award for best educational initiative.

Finally and central to achieving ‘the development of specialist health care practice’ has been the establishing of Mesothelioma Clinical Nurse Specialist posts across the UK. Without Mesothelioma UK’s funding these posts would not exist and with nearly 3000 tumour site specific nurse specialists in England alone the time was more than right for there to be Mesothelioma specific posts. Over the last two years in addition to Liz Darlison’s University Hospital of Leicester (host to Mesothelioma UK) post funding has been provided to Cambridge (Gerry Slade), Cardiff (Naomi Horne), Portsmouth (Anne Moylan), Manchester (currently advertised), Sheffield (in development), Bristol (in development) and Oxford (in development).

Each post is supported 15hours per week by Mesothelioma UK and the funding is secure long term providing the charities income continues. A service level agreement outlines expectations of the post locally (within the host trust), regionally (within the cancer network) and nationally (supporting Mesothelioma UK). The initial posts have been enormously successful and Mesothelioma UK is delighted and very grateful for MKMRF’s ongoing support with this latest initiative.

For further information please contact Mesothelioma UK on 0800 169 2409 or email mesothelioma.uk@uhl-tr.nhs.uk

Liz Darlison

Macmillan Nurse Consultant

University Hospitals of Leicester NHS Trust and Mesothelioma UK

 

This  important survey  will help to inform future research into mesothelioma diagnosis, treatments and care.  The survey will be open until the end of April to collect data from patients, carers and health professionals.

Please take the time to complete it if you possibly can.  Hearing about your own experiences will help researchers identify the questions about mesothelioma that clinical research should be trying to answer.

You can visit the project website at www.psp.nihr.ac.uk/mesothelioma/survey and complete it online if you don’t want to complete it on paper and return it by freepost.

This is part of a research Priority Setting Partnership, funded by the National Institute for Health Research and organised by the James Lind Alliance.  The survey gives patients, carers and family members affected by the disease an opportunity to identify and prioritise unanswered questions about mesothelioma.

The results of the survey will be published later this year and will be used to inform the ‘top ten’ priorities for clinical research, as determined by patients, carers and clinicians.

Please help make the project a success by:

  • completing the survey online at www.psp.nihr.ac.uk/mesothelioma/survey or completing the copy enclosed with this newsletter and returning it to the freepost address shown on the back of the form
  • passing on the information to encourage your family members, support networks, carers or colleagues to fill in the survey.

    The project is supported by The Mick Knighton Mesothelioma Research Fund, The British Lung Foundation, Mesothelioma UK, Asbestos Victims Support Groups Forum UK, The June Hancock Mesothelioma Research Fund, and Cumbria Asbestos-Related Disease Support.

     

     

     

 

First glimpse of the Lisa E Moss  Snowdrop Bracelet!

Sterling Silver with Leather Strap selling at £20.00 with all profits towards Mick Knighton Mesothelioma Research Fund

London based jewellery designer, Lisa E Moss, is recognised for her one-off, handmade, statement pieces. Having graduated from Goldsmiths College in 1998, Lisa went on to launch her self-titled label, and build her reputation as a designer with unique jewellery and great attention to detail.

Since launching her label, Lisa has built up a huge public and celebrity following – mainly by word of mouth. Her list of clients include various talents across areas of the entertainment industry like; Plan B, Leona Lewis, Fearne Cotton, Holly Willoughby and Robbie Williams to name a few.

In 2011 Lisa lost her father Billy Moss to Mesothelioma, which lead to her involvement in trying to raise awareness of this catastrophic disease. She says “I was aware of asbestos, as a budding young designer you take notice of materials and products and things like that, and I remember it being banned in 1999. But I wasn’t aware of the profound effect it would have on my life”. Billy’s diagnosis was late and his death followed very soon after, Lisa says “I was always encouraged to follow my dream, I did and now I’m living it. But my dad isn’t here to see it and he would have lived it too” 

After meeting Chris at the Mick Knighton Mesothelioma Research Fund  Lisa  felt compelled to get involved.  “If this research can help just one family, aid diagnosis, ease suffering and prolong fatality then there’s hope.” 

 You can read Lisa’s blog ‘An Industry’s Dream, A Designers Nightmare’ on her website www.lisaemoss.com  

Lisa has now designed a sterling silver with leather strap Snowdrop Friendship Bracelet, exclusivley for MKMRF with all profits going towards the Research Fund 

To Order your Snowdrop Bracelet, please click here.

 

 

 

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