1. True NTH Miranda Benney Macmillan Uro-oncology CNS Beverley Palmer Prostate Cancer Support Worker

2.  True NTH is a global initiative  UK, Ireland,Canada, Australia, New Zealand, Singapore and USA  Cost-effective models prostate cancer survivorship care  Improve the lives and experiences of men with prostate cancer

3.  3 year programme  5 ground-breaking survivorship projects: - True NTH Decision support - True NTH Exercise and diet - True NTH Supported self management (RUH) - True NTH Managing incontinence - True NTH Tackling the late effects of pelvic radiation treatment

4.  5 sites delivering supported self- management project in the UK  1 x F/T support worker and CNS 1 day per week at each site  Aim to recruit at least 8 patients per week  2 development sites  4 research sites

5.  August 2014 -development site  March 2015 – research site- University of Surrey & University of Southampton  221 men recruited in total - 92 as development site - 64 to comparison arm (recruitment finished June 2015) - 49 (so far!) to intervention arm  Uptake 60-70% (79 approached comparison arm and 70 approached intervention arm)

6.  Supported Self-Management Program  Men who are ‘stable’ (selection criteria)  Early discharge from clinic  PSA tracker and True NTH online  Workshop  Control over their own health care  Positive health care changes

7.  Radical prostatectomy 6 weeks post op PSA < 0.1  Radiotherapy 6 weeks post treatment PSA < 2  Primary Androgen Deprivation Therapy 3 months post commencement of treatment and has responded to treatment PSA < 4  Watchful waiting commencement of watchful waiting PSA 1 year  Active Surveillance not eligible

8. SUPPORT WORKER  Recruit patients  Organise and facilitate workshops  Follow up call  Telephone advice  Register men for True NTH online  Training of new SW at other sites CNS  Recruit patients  To check PSA results  Facilitate workshops  Telephone advice  Support the SW  Support CNSs  Project board member  Organise site training

10.  15 workshops so far  113 men attended  4 hour one-off workshop  10-12 men per group  SW & CNS– St John Ambulance Centre  Demo of IT portal and registration

11.  Agenda: - Signs and symptoms of recurrence - PSA testing and Health MOT - Group problem solving and men’s issues - leading a healthier and more active lifestyle - relaxation - good planning

13.  PSAT  Result check by CNS  Pt. can check own PSA  may know result before us  Health MOT to be completed at same time  IPSS  SHIM  Can message team via the portal  118 registered  Tablet loan

19.  Venues – internet access  Parking  Manual changes  Change over from development to research site  Recruitment/clinic letters  IT Portal and registration  SW – pt’s unaware of role, don’t want to bother nurses

20. “It was lovely to chat to other men, I could relate to them all which felt really good – I’m not an island on my own there are other people with the same issues and worries as me” (Michael D) “The best thing was talking to other men” (Barry R) It’s very convenient and tailor-made for people like me (Ramsay A) I’m very happy with it [True NTH] it’s a much better use of doctors time (Harley B) “It was really quite interesting. I’m even luckier than I thought!” (David S) “I learnt quite a bit wasn’t just a jolly!” (Bill C) “I had a hard time after treatment so this is extra support which is really good” (Stephen C) It’s a good idea anything to keep out of the hospital! (George G) I am in control of my PSA now – it’s a very good idea (Stan C) The workshop wraps it up very well and saves nurses time (Bill C)

21. For more information visit http://www.truenth.orghttp://www.truenth.org