Transcript Document

NCSI CYP
Manchester Pilots
Dr Ed Smith
Background
• Brief Summary
• Steering Group (Paed, TYA and Adult, GP,
CC/SOC)
• Building on work at RMCH & Christie
• Involvement of Survivors of Cancer Group
and Christie Crew (TYA)
• Pilots that added to the service currently
offered
• Management backing
Pilots
• Personalised Treatment Summary & Late
Effects Follow Up Plan
• Survivorship Programme
Patient held treatment summary
and personalised follow-up plan
• History of multi-disciplinary late effects follow up
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Paediatric Oncologists
Clinical Oncologists
Cancer Centre Endocrinologists
Social Workers
Nurses
• Pilot covering age range
– <16yo
– GOSH
– 16-26yo – Young Oncology Unit, Christie
– >26yo
– Christie, Lymphoma
• Importance of collaboration with other sites/organisations
– Gill Levitt
– CCLG Radiotherapy Late Effects Group
• Experience in Paediatric setting informing
practice in TYA/Adult populations
• SOC/CC
– keen, advice on format
– ‘GPs need more and concise information’, ‘knowing
what to expect takes out some of the worry’, ‘ be good
to have something you can take with you when you
move’
• All tumour types including Haematology
Format
• Simple concise summary of;
– Diagnosis
– Stage
– Treatment (including chemo doses and dose to OAR
from XRT)
– Summary of potential Late Effects and the importance
of follow up needed post disease specific surveillance
– Work closely with Paeds & Adult communities for
similar formats and outcome measures.
– Format age specific
Outcomes
Survivor held treatment summary
Provides clear information about previous
treatment to survivor and any health care
professional involved in the management of
any subsequent health problem
Individualized follow-up plan (also survivor held)
Informs and empowers survivor
Survivor views on both the above obtained by
questionnaire
Provides feedback on value of these interventions
to survivors
General Practitioner views on both the above
Provides feedback on value of these interventions
to General Practitioners.
(Appropriate vigilance and timely referrals in case
of problems)
Improved attendance of Late Effects Follow Up
Improve care received
Ongoing Discussions
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Simplicity
Content
Streamlining across age ranges
Site specificity
Further evaluation end points
Survivorship Programme
• Resources post treatment CC/SOC/Social Workers/Ward & Clinic
Staff/Online resources/Booklets/National
organisations
• SOC- ‘Information in an interactive format’,
‘others may ask questions that I hadn't
thought of’, ‘fertility information needed’,
‘advice on mortgages’
• Assessing uptake and utility to patients of providing a
Survivorship Program consisting of an interactive lecture
series.
• ‘Dip-In/Dip-Out’
• 1½ Hrs approx with Q&A
• Associated course material
• Material available on web
SESSION 1
Coping After Cancer (I)
Coping, Anxiety Management, Fear Of
Recurrence
SESSION 2
Coping After Cancer (II)
Relationships, Body Image
SESSION 3
Your body after treatment for cancer.
Late Effects Of Treatment & Fertility issues
SESSION 4
How to get Mortgages, Travel Insurance,
and Benefits
Financial – Insurance, Mortgages, Benefits
SESSION 5
Are others moving on? How to get back
into education.
Education - Telling people about your past
cancer, Laws and Regulations that
protect you, balancing clinic
appointments with work. Interview
Techniques
SESSION 6
Are others moving on? Employment –
getting and staying with a job.
Employment – CV Writing, Telling people
about your past cancer, Laws and
Regulations that protect you.
Balancing clinic appointments with
work.
SESSION 7
Life skills and keeping yourself fit and
healthy
Nutrition, Exercise and Risky Behaviour.
Reducing the risk of the late effects of
treatment. Alternative therapies –
Massage, herbal supplements.
SESSION 8
Getting back to ‘normal’
Transition and ‘Life After Cancer’
SESSION 9
Outcomes
Survivorship Program – Lecture Series
Provides clear information and advice in relation
to aspects of life affected in Survivorship.
Empowerment.
Program associated Literature
Provides clear information and advice in relation
to aspects of life affected in Survivorship in a
‘take away’ format. Additionally contact
details of other organizations that can be
approached for advice
Survivor views on both the above obtained by
questionnaire – pre-program, at the program
end, and 1 year post program, and each
particular topic
Provides feedback on value of these interventions
to survivors.
Allows re-assessment and ongoing refinement of
programme
Ongoing Discussions
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Up to patient when they attend post treatment?
Other topics or areas need covering?
Patients alone?
Partners/Carers?
Reduced capacity (e.g. brain tumour patients)?
Access to previously treated paediatric patients
who may not remember much of their treatment?
• Evaluation End Points
• Scheduling
Conclusion
• 2 pilots in TYA setting in Manchester
• Offers collaboration across different trusts and
age ranges.
• Addresses some concerns that Survivors have
• Any thoughts welcome