1. 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

5. Patient Information

6. Mesothelioma UK Help Line Free phone : 0800 169 2409
Open 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

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

8. Trial Info

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

10. 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% MDT
85% Histology*
Subtype 70%*
90% seen by Lung CNS
All offered access to clinical trials
*rates below investigated

11. 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

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

13. 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

15. River Cruise July 2012

16. Action Mesothelioma Day July 2014

17. Spreading the Word

18. 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.

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