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

2. Employment issues / benefit burden
Physical symptoms
Employment issues / benefit burden
Isolation / loss of confidence
Body image issues
Sexual relationships
Not knowing who to approach for help
Impact on families, social network
Emotional issues
Memory / concentration problems
Cancer and it’s treatment impacts on quality of life – not only for the person with cancer, but their loved ones too!
Additional co-morbidities associated with age
Embarrassment / difficulty coping

3. Pelvic symptoms

4. 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.’
A patient quote paints a very graphic picture!
Source: Throwing the light on the consequences of cancer and its treatment, Macmillan 2013.

5. Pandora’s box Survival rates = Consequences ?
Newer treatment techniques
IMRT / VMAT /
SABR/IGRT
New chemotherapy drugs
In Radiotherapy, we see new techniques emerging aimed at minimising consequences of cancer treatment, but many of these treatments involve a low dose bath around critical organs. These techniques have not been around long enough to understand what the long term outcomes are likely to be!
Similarly, just as newer radiotherapy techniques are evolving, new chemotherapy agents / immunotherapy treatments are emerging – the long term outcomes of which are unknown.
What we can say, is that as survival rates amongst our patients increase, then consequences may increase too
It’s like opening Pandora’s box – we don’t know for sure, but we have to plan ahead.
Late effects occur at any stage in the patient’s lifetime – from 6 months post treatment to many decades later. For example, patients who have therefore undergone treatment today, may not develop issues until 2030 !!!!
Survival rates = Consequences ?

6. 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 sPROM of all radical pelvic patients
Highlighted service to GPs and established referral criteria
The Macmillan Consultant Radiographer in Late Effects was appointed to oversee all patients with consequences of cancer treatment at the Beacon Centre. The post came about as the result of a patient “complaint”.
A patient who had undergone pelvic radiotherapy was no longer able to earn a living and had to take early retirement as a result of bladder and bowel frequency, which significantly affected his ability to perform his work.
The post is funded by Macmillan for 3 years with guaranteed Trust pick up at the end of pump priming. During the first year the consultant radiographer has (as above)
With the support of Ben Roe – Radiotherapy Service Manager for the Beacon Centre, a simplified patient reported outcome measure was undertaken of all radical patients who have undergone radiotherapy to the pelvis from May 2009 to June 2014.
The simplified PROM and results are shown on the next slides

7. Macmillan trigger symptoms Free text Simple QoL scale
sprom questionnaire
Macmillan trigger symptoms
Free text
Simple QoL scale
Coded to patient database
Response options (yes, no, N/A, speak to professional)
The sPROM questionnaire represents patient-assessed outcomes or concerns and therefore is often considered to be the most valuable and important assessment of outcome following treatment. Whilst the sPROM questionnaire is not a validated tool and the aim of this study was not to undertake this validation, the questions have been drawn from clinically used and well understood assessment tools for pelvic late effects, incorporating quality of life, relationship concerns, physical concerns and emotional concerns.

8. sPROM 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
Erectile Dysfunction referral 24
Other* 14
Sent
Returned
77.7% Adjusted response rate
524 questionnaires were sent out to our patients, 383 were returned – 77% response rate.
The PROM resulted in 90 telephone calls to patients requesting to speak to a health care professional.
164 patients received written information with respect to late side effects, services available etc.
39 patients required face to face consultation with the Late Effects consultant radiographer – where tests / investigations / treatments /onward speciality referrals were made.
10 patients flagged with issues which required medical review (eg PR bleeding, where flexible sigmoidoscopy would be necessary and the subsequent pathway indicated that the gastroenterology service would be most appropriate)
4 patients needed dietetic input
64 patients were signposted to services such as Somerset Primary care continence service, Somerset Partnership Talking therapies (psychological well being practitioners)
4 people enquired about financial support and were referred to Citizens Advice Bureau Macmillan Support workers for benefits / grants applications
24 men were referred to an Andrology clinic for erectile dysfunction.
It should be noted that a significant number of patients were provided with multiple outcome actions and that telephone triage was used effectively where greater detail or investigation was required to confirm appropriate clinical management. Where concerns were not evaluated to be at a level that required professional management appropriate patient information and guidance was provided by post, direct to the patient.
*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

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

10. Tiered model of care at The Beacon
During treatment - Information and resources
sHNA assessment
Radar key / toilet card
Tailored discussions re side effects
Self management
Medications
At the end of treatment - sHNA 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
How does the late effects service integrate with the radiotherapy pathway?
Patients undergoing radiotherapy at the Beacon Centre are given face to face support during treatment by two Macmillan Review radiographers.
They work closely with the Macmillan Consultant to implement elements of the Recovery Package including self supportive management techniques, healthy lifestyles / options, what to look out for in the future. Treatment summaries are given (to both the patient and their GP) on discharge from Radiotherapy (highlighting the development of potential late effects) and patients at low risk of developing recurrence are stratified to attend a health and well being clinic, where information about accessing the late effects service is highlighted again. Patients who have had significant toxicities during treatment are asked to attend the Late effects service for ongoing support, providing continuity of care. Information about the Late effects service is given during treatment, for self referral should this be necessary in the future.
Late effects service accepts referrals from Clinical Oncologists, CNSs (where they are carrying out nurse led follow up) and GPs

11. 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)
The service is seeing increasing numbers of referrals – the majority of these are pelvic patients with consequences of cancer treatment. Sustainability is vital – business case for expanding the team!!.
New guidance is emerging all the time (guidelines on the management of upper GI symptoms of radiotherapy is due out very soon)
Raising awareness is vital
Collecting information about pelvic health before treatment is just as important as collecting information afterwards. An assessment needs to be carried out at the beginning of the pathway as a base line measurement!
Our tiered model of care will need to be revised as necessary, as new evidence emerges, we will need to adapt our practices accordingly. We also need to take into consideration patient feedback, to ensure we are constantly targeting unmet needs.
The Beacon Centre radiotherapy dept is about start a bladder trial called RAIDER – this is an adaptive, tumour - focused radiotherapy treatment for bladder cancer, where treatment volumes can be grown or reduced depending upon the size of the bladder at the time of treatment. Early results in participating centres show that the new technique gives much better target coverage with improved normal tissue sparing
There is discussion about the ongoing development of an IT platform which can act as a virtual multi-disciplinary team - complex cases can be discussed through a safe IT platform which utilises experts from a national database to suggest the best patient pathway.

12. 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 post-treatment care in XXXXXXXXX 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!”
I just want to end on a couple of piece of patient feedback, which have been useful in reinforcing the importance of the Late Effects Service.
Helen, if anyone wants to ask any questions, I would be happy to answer them via or telephone call at a later date. Just let me know.

14. Karen Morgan