Moving forward with Education and Involvement

Helen HatcherTYA clinical Lead and TYA Late Effects specialist

Hannah GreeneClinical Nurse Specialist Late Effects

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

Teenage and Young Adult Cancer Service

Teenage and Young Adult Cancer Service

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

Other opportunities

• Family days• Website/Facebook• Off treatment days• Challenge/fun events e.g. Wild tracks,

activities• Transition-Hannah• Rescue

Transition

• To TYA• From TYA to older adulthood• The role of the TYA MDT

• TYA period ideal time for educating them in their journey

Brain Tumour Group to Support Self Management

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

Staff

• CNS Late Effects• CNS Neuro Oncology• Psychologist• Councillor • Activity Co-ordinator

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

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

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

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

Social Outing

• Rock climbing and Archery!

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..”

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

Rescue

• Luke

• Always ensure they have a point of contact however long out

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

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

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