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Mesothelioma UK

Mesothelioma UK. Gerry Slade Mesothelioma UK CNS South West gerry.slade@nhs.net. Who am I??. Trained in London - Ward Sister Brompton Career break 1995 Oxford Radcliffe – Respiratory/Trials 2002 Pleural/Mesothelioma Nurse Specialist Oxford incl. clinical trials

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Mesothelioma UK

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  1. Mesothelioma UK Gerry Slade Mesothelioma UK CNS South West gerry.slade@nhs.net

  2. Who am I?? Trained in London - Ward Sister Brompton Career break 1995 Oxford Radcliffe – Respiratory/Trials 2002 Pleural/Mesothelioma Nurse Specialist Oxford incl. clinical trials 2008 Mesothelioma Nurse Specialist Papworth, Cambs – Mesothelioma UK CNS East Anglia 2015 Mesothelioma UK CNS South West

  3. Mesothelioma UK is a National Nurse Led Initiative. • As a professional, organised and respected charity, it seeks to provide up-to-date, impartial, accurate information. • It aims to promote the development of specialist health care practice and research to improve outcomes and experience of care

  4. Patient Information

  5. Mesothelioma UK Help Line Free phone : 0800 169 2409 • Open 08.30-4.30 Monday to Friday with answer phone out of hours • 3,000 calls per year • 35% referred to RN • 52% Patient and carers • ! Average length of call 17 minutes

  6. Mesothelioma UK Newsletter Circulation = approx 5000+ 3500 Electronically & 2500 postal copies

  7. Trial Info

  8. National Mesothelioma Experience Survey 652 Patients and Carers December 2011 and April 2012. Overall experiences of care varied widely from “wonderful” to “barbaric”.

  9. NLCA – Mesothelioma Report8,740 patients 2008-2012 -85% of expected number of cases. Key messages • Median of 10 cases • Key audit data excellent except stage • 2/3 receive anti-cancer treatment • Chemo 34% • Surgery 27% • Radiotherapy 29% Recommendations • PS recording +/= 85% • IMIG staging • 95% discuss @ MDT • 85% Histology* • Subtype 70%* • 90% seen by Lung CNS • All offered access to clinical trials *rates below investigated

  10. What challenges nurses? • Keeping own practice up to date with rare tumour • Poor prognosis and limited treatment • Time required supporting patients adequately • Symptom control • Post mortem issues • Complexity of information/advice • Accessing Clinical Trials

  11. Mesothelioma Specialist Nurse Posts • Leicester • Cambridge • Cardiff • Portsmouth • Bristol • Manchester • Sheffield • Oxford • Newcastle • London (TBC) • Glasgow

  12. New Cambridge Post - based at Papworth • 15 hours a week • Responsibilities; • Locally – Key-worker for all patients • Network – Liaise with other CNS, Outreach Clinic, Support Group • Nationally – Teaching

  13. River Cruise July 2012

  14. Action Mesothelioma Day July 2014

  15. Spreading the Word

  16. South West – My Aims Regionally; • Work alongside local Lung CNS’s to; • Provide expert advice and support • Raise awareness of Mesothelioma UK info etc • Develop already successful Support Group (BBAFS) • Encourage discussion of all mesothelioma patients at Regional Mesothelioma MDT – improve trial uptake Nationally; • Represent SW at NLCFN, BTOG and other meetings – teaching, networking etc.

  17. Thank you www.mesothelioma.uk.com gerry.slade@nhs.net Tel; 07500 121668

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