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 Leicester Cambridge Cardiff Portsmouth Bristol Manchester Sheffield Oxford Newcastle London (TBC) 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.

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