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 –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 summaryProvides 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 aboveProvides feedback on value of these interventions to General Practitioners. (Appropriate vigilance and timely referrals in case of problems) Improved attendance of Late Effects Follow UpImprove care received

Ongoing Discussions 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 1Coping After Cancer (I)Coping, Anxiety Management, Fear Of Recurrence SESSION 2Coping After Cancer (II)Relationships, Body Image SESSION 3Your body after treatment for cancer.Late Effects Of Treatment & Fertility issues SESSION 4How to get Mortgages, Travel Insurance, and Benefits Financial – Insurance, Mortgages, Benefits SESSION 5Are 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 6Are 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 7Life 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 8Getting back to ‘normal’Transition and ‘Life After Cancer’ SESSION 9

Outcomes Survivorship Program – Lecture SeriesProvides clear information and advice in relation to aspects of life affected in Survivorship. Empowerment. Program associated LiteratureProvides 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 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