Mesothelioma UK Gerry Slade Mesothelioma UK CNS South

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 2008 Mesothelioma Nurse Specialist Papworth, Cambs – Mesothelioma UK CNS East Anglia 2015 Mesothelioma UK CNS South West

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

Patient Information

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

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

Trial Info

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

NLCA – Mesothelioma Report 8, 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

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

Mesothelioma Specialist Nurse Posts 1. Leicester 2. Cambridge 3. Cardiff 4. Portsmouth 5. Bristol 6. Manchester 7. Sheffield 8. Oxford 9. Newcastle 10. London (TBC) 11. Glasgow

• 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

River Cruise July 2012

Action Mesothelioma Day July 2014

Spreading the Word

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.

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