Developing Services for Teenagers and Young Adults (TYA) with Cancer
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1 Selena Riggs South West Specialised Commissioning Group Deirdre Brunton- Teenage Cancer Trust, TYA Lead Nurse Developing Services for Teenagers and Young Adults (TYA) with Cancer South West Specialised Commissioning Group
2 NICE IOG Published August 2005 Instigate and motivate -SW Specialised Commissioning Group- Teenage Cancer Trust funded TYA Program Manager
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4 South West Implementation Strategy
5 What happened to get us here? (1) UBHFT Conference and SW SCG stakeholder event > UBHFT Cancer Board 25 th July 2008 > confirmation of TYA PTC status Final TYA Implementation Summary submitted to ncat > model of PTC and up to 8 shared care centres TCT TYA Lead Nurse appointed at PTC 2009 TYA MDT co-ordinator identified at PTC Identification of resources agreed by commissioners 2009/2010: - recurring funding for up to 4 wte nurse posts - p/t TYA psychological support post
6 SW wide stakeholder engagement events x 2 What happened to get us here? (2) Development of Shared Care and designation requirements > self assessment proforma SW wide approach to On Line TYA MDaT > Non-medical research proposal > links with Shared Care Units (SWSCG / external funded) ISEEU Private Industry Partnership Appointment of TYA Lead Clinician at PTC (external funded) SW wide approach to patient choice/support/engagement > realshare website- Teenage Cancer Trust Research > link to NHS Choices
7 KEY South West TYA Cancer Services Principle Treatment Centre Gloucester Shared Care Centre Bristol PTC Release: Jan-11 Bath Taunton Exeter Truro Plymouth
8 What happened to get us here? (3) TYA peer review measures gap analysis Sept 11 > link to designation work programmes Mainstreaming TYA services > links to future work and other programmes Recruitment of Clinical Liaison posts (one outstanding at Sept 11) Designation process for PTC and Shared Care units inc. visits Jan 2011 > quarterly feedback to SCG Link with SCSCG / Southampton Hospital / Dorset Cancer Network > designation process
9 No of patients No of patients by age and hospital of diagnosis Three Counties (13%) Peninsula (36%) ASW (51%) Cheltenham l 5 Gloucester Hospitals Exeter Torbay Plymouth Hospitals Barnsatple Truro Bristol Hospitals Taunton Bath Yeovil TYA Workload in the South West by cancer network ( )
10 Developing a TYA Service & Shared Care Approach for Young People whilst awaiting a Teenage Cancer Trust Unit/s
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12 PTC Priorities Transition Survivorship User Involvement Development Recruitment for clinical trials Palliative care provision Research/Education of Staff/empowerment/profile/cultural change Psychological and social support Vocational issues for patients
13 Using a Web Based Communications Platform TYA MDaT And Co creating an online Social Network TYA Patients in the South West Region
14 Standard Approach South West
15 Transition Transition is a lengthy process and should continue into adult care RCPCH 2003 Transition should be a guided, educational and therapeutic process rather than an administrative event NSF 2004 The process begins in childhood, escalates in the teenage years and continues into adulthood and is ever evolving..we re not talking about transfer
16 TYA Clinical Liaison Nurse Professional linchpin to deliver a TYA Service for young people in PTC and across all Shared Care designated in the South west Identify, processes and pathways of care for TYA with cancer care with PTC Identify all patients between the ages of newly diagnosed with cancer in their area Support and act as a Key Worker for patients who do not already have a key worker
17 TYA Clinical Liaison Nurse Develop strong professional links with the TYA Team in their area i.e. make professional links with Consultants, Clinical Nurse Specialists and all staff exposed to the care of Teenagers and young adults with cancer. Develop their links with their Cancer Network and their User Involvement Facilitator/ Educator Moderator Realshare Website.
18 TYA MDaT To discuss all new patients plus existing patients who have relapsed or have issues (clinical or psychosocial) Specific aims of MDaT: Undertake a developmental focused holistic assessment : 1) To ensure statutory cancer registration is completed 2) To provide clinician/professional peer support, review diagnosis and treatment, promote Clinical Trial access, fertility advice/expertise, educational/vocational support, financial advice support and ongoing review 3) To deliver psycho-social support based on the unique developmental holistic assessment of each patient :
19 TYA : MDaT Central Line Version 1.01 April 20th 2009 Process Flow Questions Request New Diagnosis / Already on treatment New patient discussion SSG/Shared Care Centre Mdat Alert Action Points Stop & Think Request Stop How will the system work IM & T People SSG Requesting Advice Re TYA Register What Where Log & Register TYA Registration National SCR MdaT meeting Schedule Review Report Recommendations Systematic Review What MDaT review Discussion
20 TYA MDaT: An MDT in Development Running weekly since October 2009 Currently taking referrals from Bristol and SW Shared care Ultimately will be mandatory On-line platform overcomes the logistical geographical issues
21 MDaT Online Discussion
22 TYA MDaT Platform
23 Courier Service
24 Information seeking AYA with cancer indicate that they prefer to visit cancer websites that contain cancer-related information, provide the ability to chat with AYA with cancer, and offer some type of game. Joshua D. Schiffman, et al (2008) Internet use among adolescent and young adults (AYA) with cancer Pediatric Blood Cancer;51:410-41
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26 Challenges and opportunities Cross boundary working Approach to care across disease site specific teams Access to age appropriate facilities Establishing TYA shared care Developing TYA specific survivorship programmes Planned transition between children and young people s services and between young people s and adult services. Improvement in outcomes and experience for TYA Model of care for other groups?
27 Teenage young adult cancer service- spring board to change Opportunity to Identify life-stage psychosocial issues and provide appropriate support during and after treatment Engage with Survivorship strategies Focused research on reducing treatment toxicity and identifying needs & acting on results
28 Thank you and any questions?
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