Consequences of cancer treatments Karen Morgan Macmillan Consultant

Consequences of cancer treatments Karen Morgan Macmillan Consultant Radiographer Jan 13 th 2015

Background - UK / year Macmillan facts and figures – ▫ 2 million are living with consequences of cancer treatment ▫ Estimated 500, 000 people living with more than one problem ▫ Physical and emotional ▫ Cancer survivors estimated to rise to 4 million in next 20 years (Source - Throwing light on the consequences of cancer and its treatment, Macmillan Cancer Support 2013)

Of those two million people. . . • 40% say they are unaware of long-term side effects. • 78% have experienced physical health problems in the last 12 months. • 40% with emotional problems have not sought help. • 71% of those who finished treatment 10 years ago have experienced physical health problems in the last 12 months (Source - Throwing light on the consequences of cancer and its treatment, Macmillan Cancer Support 2013)

In addition…. • Healthcare system facing financial pressure • Innovation and reform • Redesign of services – quality, value for money ▫ Pressure from follow up appointments (1160 / month) ▫ Consequences of cancer treatment ▫ Not good at picking up LE in FU

NCSI Vision Document (2010) “. . . current follow-up arrangements do not address the full range of physical, psychological, social, spiritual, financial and information needs that cancer survivors may have following their treatment. ”

Quality of Life (Radiotherapy) Acute toxicities • Occur in tissues with rapid cell turnover, (eg mucous membranes) • Acute inflammatory response • Peaks at 2 -3 weeks • Usually short lived, resolve within 3 months • Patients recover, but often need supportive therapeutic and pharmacological strategies

Quality of Life (Radiotherapy) Late effects • Can develop from 6 months to many years later • Often progressive • Usually permanent • Often multi-factoral • Multi-modality treatments increase risk ! concurrent chemorad = risk of peripheral neuropathy / renal damage etc

Pre-exisiting injury – smoking, Diabetes Pre-disposition (to late effects development) – inflammatory bowel disease, MS, genetic mutation (eg P 53)

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

Patient with lower GI symptoms ‘How was I? On a good day uncomfortable, using pads, and planning carefully every time I went out of the house. On a bad day, I’d rather not eat than embarrass myself in front of family and friends and I sleep in a separate room now. ’

Main issues (1) • Historical legacy – patient treated elsewhere • SW – Age profile – LE combined with other co-morbidities • Little information on the scale of the problem! • Symptoms managed poorly, no guidance ! • Unnecessary investigations / ineffective treatments • Impact on NHS resources • Who takes responsibility ?

Main issues (2) * LE services – few specialist services over large geographical area. * Some services regionally (referrals, funding, travel) * LE services traditionally associated with paediatric oncology * NCSI recovery package (approach is not standardised)

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

Tiered model of care at The Beacon During treatment - Information and resources • HNA assessment • Radar key / toilet card • Tailored discussions re side effects At the end of treatment - HNA and Treatment Summary • Include potential future consequences • How to minimise / monitor • Healthy choices • Primary care management • ? H + WB clinic Problems that have not settled, or develop 6 or more months after LATE EFFECTS SERVICES + THOSE

Late effects services Nationally – Pelvic Radiation Disease Clinic – Royal Marsden 2. 5 hours by train and tube !!!! Hyperbaric Oxygen – Plymouth, Merseyside 60 treatments is usual, no NICE approval Virtual MDT – complex cases, online password protected platform. 7 day process

Late effects services Regionally – • Fatigue and Life Style Management for Cancer Survivors – Step Up Service, Bath • Breast Radiation Injury Service, Bath (Manchester and London no longer taking referrals) • Emotional wellbeing, comp therapies (Penny Brohn Cancer Care – Bristol and Talking therapies (Somerset Partnership) – CBT, psychological support • Others? – adult LE clinics associated with childhood cancers, Pro. Active (GP exercise referral), CAB

Late effects services Locally • Gastroenterologist (interest in PRD) • Endocrinologist • Local therapists – (SLT, dietician, physio, lymphoedema) • ED clinic • Pain clinic • Women’s health • Nurse Counsellors

Where are we now? • New guidance for LE symptoms, other sites to follow – implementation? Succinct algorithms for ease ? • Education for primary care / self development (RMH e module) • Assessment / screening tools / PROMS vital ! • Tiered model of care • Utilisation of services and resources • Referral pathways? CCG / Regional Survivorship groups

Making a difference ! * Prevention to minimise wherever possible * Inform patients of potential LE * Identify those at risk * Assessment – HNA address unmet needs * Support patients through local and regional LE pathways * Patients gain independence / return to work * Prevents unnecessary hospital admissions / GP consultations * Saves NHS money!. . . .

Golden nuggets ! • For every £ 1 spent on lymphoedema treatments, the service estimates the NHS saves £ 100 in reduced hospital admissions. • If just half of breast cancer survivors who initially return to work but then leave were helped to stay in work, the economy could save £ 30 M every year. Reference: NHS London (2012) Allied Health Professional QIPP pathway for cancer

Further information or direct referrals Karen Morgan, Macmillan Consultant Radiographer (Late Effects), c/o The Radiotherapy Dept, The Beacon Centre, Taunton, TA 1 5 DA. Telephone 01823 342933 Email: karen. morgan@tst. nhs. uk