moving forward with education and involvement
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Moving forward with education and involvement Helen Hatcher TYA clinical Lead and TYA Late Effects specialist Hannah Greene Clinical Nurse Specialist Late Effects NHS Cambridge University Hospitals Presentation from an event held in London on Wednesday 9 October with the Teenage and Young Adult (TYA) Centre Champions and our Clinical Leads to share learning, good practice examples, the successes, challenges and barriers to implementing: Treatment summaries End of treatment care plans Increased self-management for TYAs after cancer treatment The output from the meeting will be to define what support NHS IQ can provide locally to assist TYA teams in order to make progress with their implementation plans.TRANSCRIPT
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Moving forward with Education and Involvement
Helen HatcherTYA clinical Lead and TYA Late Effects specialist
Hannah GreeneClinical Nurse Specialist Late Effects
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Overview
• TYA self management• Education from the start• Family days/off treatment days• Challenge/fun days (Hannah)• Importance of transition in education and self
management (Hannah)• Involvement in Focus groups and e group
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Teenage and Young Adult Cancer Service
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Teenage and Young Adult Cancer Service
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From the start
• Information about themselves, diagnosis and treatment
• Copies of treatment plan with dates • Filofax offered (TYA designed)• Checking with young person (and their
significant others)• Opportunities for discussions to come back to
e.g. fertility
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Other opportunities
• Family days• Website/Facebook• Off treatment days• Challenge/fun events e.g. Wild tracks,
activities• Transition-Hannah• Rescue
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Transition
• To TYA• From TYA to older adulthood• The role of the TYA MDT
• TYA period ideal time for educating them in their journey
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Brain Tumour Group to Support Self Management
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Outline of Group
• Patients aged between 14-17• Parents or carers• 2.5 hour sessions once a month• 4 targeted groups and 1 social outing• Run in the evening after school• Topic’s set by the young people• Topic’s mirrored in the parents group
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Staff
• CNS Late Effects• CNS Neuro Oncology• Psychologist• Councillor • Activity Co-ordinator
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Setting up
• All eligible young people sent information letter
• All who reply get a phone call to confirm commitment for all the sessions
• First date is set in advance. All other dates set with agreement from all attending
• Social session decided buy the young people
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Cost
• Food, drink, activities and social group cost funded by a local charity
• Staff work a long day, on the day of the group and work a shorted day sometime in the same week to take back time
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Session 1• Introduction, Ice breaker, Connections board,
Expectations, Boundaries, Listening to each other
Session 2• Worries and Anxieties, Friendships and relationships
Session 3• Healthy lifestyles, Health promotion, Diet and
exercise, Risk taking behaviours
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Session 4
Transition and moving on• Who would take over their care• Where the adult clinic is based• Writing down questions• Who to contact• Understanding and taking responsibility of
illness
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Social Outing
• Rock climbing and Archery!
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Evaluation
• Strengths“finding people the same as me..”“telling everybody what you have been through..”“share your differences, share you problems..”• Weakness“more people..”“not been the only boy..”“Maybe a male member of staff..”
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Family/off treatment days
• During and after treatment• Saturdays and drop in workshops on key clinic
days• Cover a range of issues and activities• Some with parents, some sessions separated
• Fatigue management, activity, fertility, benefits, getting back into education, managing feelings, managing expectations
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Rescue
• Luke
• Always ensure they have a point of contact however long out
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TYA Involvement
• Focus groups• E group
• Lessons learned– Differences in young peoples’ needs
• Opportunities– To change what may have worked 3 years ago but
is less popular now
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TYA quotes
• I know more about me than my GP. He doesn’t listen so I need something I can show him so he will take me seriously
• I didn’t really think about it at the time but I wish I had asked more about fertility-I don’t know where I stand now
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Key points
• Involve the young person as early as possible• Offer individual opportunities which suit that
young person• Check understanding and ability to self manage
through treatment/transition• Discuss individual transition needs at MDT• Long term point of contact in case of future need• Ability to adapt to changing needs