The Late Effects Service Beacon Centre Taunton Kren

The Late Effects Service, Beacon Centre, Taunton. Kàren Morgan, Macmillan Consultant Radiographer

Employment issues / benefit burden Physical symptoms Isolation / loss of confidence Not knowing who to approach for help Memory / concentration problems Body image issues Impact on families, social network Sexual relationships Emotional issues Additional comorbidities associated with age Embarrassment / difficulty coping

Pelvic symptoms

Patient with lower GI symptoms ‘I was hit with bowel incontinence, although it’s more controlled now, I still suffer with periodic bowel incontinence six years later. Having changed my own children’s nappies, it’s ironic that at 68 I’m the one who now needs nappies. ’ Source: Throwing the light on the consequences of cancer and its treatment, Macmillan 2013.

Pandora’s box Newer treatment techniques IMRT / VMAT / SABR/IGRT New chemotherapy drugs Survival rates = Consequences ?

LE - The first year Established steering group Understanding of pathways Established mentorship Identified patient needs Undertaken RMS training in the management of lower GI consequences Developed patient information Implemented late effects service at Taunton Undertaken s. PROM of all radical pelvic patients Highlighted service to GPs and established referral criteria

s • • • prom questionnaire Macmillan trigger symptoms Free text Simple Qo. L scale Coded to patient database Response options (yes, no, N/A, speak to professional)

s. PROM Outcomes Outcome Action Total Telephone Triage 90 General information provided by post 164 Consultant Radiographer OPA 39 Consultant Medical OPA 10 Dietitian referral 4 Signposting information 64 CAB referral 4 Erectile Dysfunction referral 24 Other* 14 524 Sent 383 Returned 77. 7% Adjusted response rate *Other included: formal counselling; specialist fatigue service; direct to specialist team (e. g. urology); diagnostic imaging; specialist support groups; community support; vaginal lubricant samples provided

Conclusions Results confirm the unpredictable and sporadic nature of radiotherapy late effects !!!

Tiered model of care at The Beacon During treatment Information and resources • s. HNA assessment • Radar key / toilet card • Tailored discussions re side effects • Self management • Medications At the end of treatment - s. HNA and Treatment Summary • Include potential future consequences • How to minimise / monitor (HWB) • Healthy choices • Primary care management • LE service Problems that have not settled, or develop 6 or more months after LATE EFFECTS SERVICE

Where are we now? Increasing number of referrals ! Guidance for management of GI symptoms, ED, Gynae, (upper GI due soon and more will follow). Education - invited speaker, national conferences, Fresh Looks - raising GP awareness Assessment / screening tools / PROMS vital ! Tiered model of care – adapt and revise as necessary New RT techniques / approaches (eg RAIDER trial for bladder patients) Virtual MDTs for complex cases (Working with Macmillan on phase two of a IT platform)

Patient feedback “I just wanted to express a heartfelt thank you to you for your great kindness, our conversations made such a difference. Your unhurried approach to me and the difficulties and frustrations I was experiencing with posttreatment care in XXXXX were of enormous relief to me and helped me to a new feeling that I actually mattered”. “Thank you for the letter you sent on my behalf and copied to me. The GP was on the phone straightaway yesterday and it looks as though I am getting the help I need at last!”

Karen Morgan Karen. Morgan@tst. nhs. uk 01823 342933