1. Teenagers and Young Adults with Cancer Chemotherapy Conference 19 th March 2009 Linda Devereux Associate Director

2. NICE IOG Published August 2005 Principal treatment centres for children and young people Shared care arrangements Care delivered through MDTs Age appropriate facilities for all Entry into clinical trials

3. Key Messages for Commissioners ‘A small but uniquely vulnerable group…..new clinical collaborations that cross site-specialised models. The need for all young people to benefit from the expertise of site-specific MDTs and the new TYA MDTs with unhindered access to age-appropriate care environment and psychosocial support is an essential aspect of the NICE IOG’ Professor Mike Richards, National Cancer Director/ Sheila Shribman, National Director for Children – National Advisory Group

4. Key Messages for Commissioners All patients should be discussed at both a site- specific and TYA MDT meeting All patients aged 16-18 years should be referred to a principal treatment centre All patients should be offered referral to a principal treatment centre The TYA MDT should have a role in co-ordinating treatment, psychosocial care and peer contact/support wherever young people are treated Robust arrangements for transition should be in place

5. Key elements of the MCCN strategy Designated Principal Treatment Centre at Clatterbridge Centre for Oncology Treatment and care concentrated in a limited number of Trusts Teenage and Young Adult MDT working closely with site- specific MDTs and the Paediatric Oncology MDTs TYA 4-bedded unit at CCO – planned for summer 2009 Dedicated haematology inpatient and day case facilities at Royal Liverpool Hospital Treatment of young people with paediatric type cancers (up to 19 years) in the Teenage Cancer Trust Unit at Alder Hey Children’s Hospital Specialist care will continue to be provided in specialist centres

6. Royal Liverpool University Hospital Level 1 to 4 Haematology Bone Marrow Transplant Service Specialist Testicular Surgery Soft Tissue Sarcoma Surgery TYA MDT Clatterbridge Centre for Oncology Chemotherapy Radiotherapy Linked diagnostic & treatment centres Alder Hey Hospital Paediatric type cancer to age 20 Principal Treatment Centre Specialist Trusts

7. Diagnostic GroupNo. diagnosed Leukaemias7 Lymphomas18 CNS8 Bone<5 Germ cell11 Skin11 Other16 Total72 16 – 24 yrs diagnosed 2005 MCCN residents

8. Hospitals attended 16 – 24 yrs diagnosed 2005 MCCN residents Hospital attendedTotal Alder Hey4 Arrowe Park10 Clatterbridge Centre for Oncology49 Countess of Chester6 Royal Liverpool and Broadgreen27 Aintree15 Walton8 Warrington10 Whiston20 Total129

9. Who Cares for Young People? MCCN Care Pathways Dr Nasim Ali Lead Clinician for TYA MDT Clatterbridge Centre for Oncology

10. Introduction Teenagers and young adults fall into care gap between paediatric and adult oncology services TYA require special attention as poorer outcome without this Young people should have access to age appropriate care as well as clinical expertise Centralised system- unique physical, social, educational needs as well as clinical needs recognised and supported by peers and professionals

11. Epidemiology of Cancer in TYA Cancer is more common in young people aged 15-19 than in children (incidence = around 150-200 per million) Incidence rates in young adults aged 20-24 higher than rates observed in the 15-19 age group (226 /million) Profile of disease differs from that seen at younger ages- transitional pattern between that seen in children and 20-24 year olds The pattern of occurrence in the 20-24 age group more closely resembles that seen in adults

12. Cancer in TYA Late ‘Paediatric’ tumours- eg Rhabdomyosarcoma, Wilms, Neuroblastoma ‘Age specific’ tumours- eg bone tumours and germ cell tumours Early onset carcinomas- eg melanoma, thyroid carcinoma, nasopharyngeal carcinoma

14. Some ‘Common’ Tumours Ewing’s Sarcoma Osteo sarcomas Soft Tissue Sarcomas Hodgkin’s Disease Non Hodgkin’s Lymphoma Leukaemia

15. Improved survival Increased incidence and prevalence Cancer is an important cause of death in children and young people Less clear data in TYA than children Late effects in survivors

16. Role of the Young Persons MDT

17. TYA MDT Multidisciplinary team Discussion of all patients diagnosed with cancer aged 16-24 Based at Principal Treatment Centre Coordinating function for treatment, psychosocial care and peer contact/support wherever they are receiving care

18. Multidisciplinary team Medical & Clinical Oncologists Haematologists Social Worker Psychologist Palliative Care Physiotherapist Occupational therapist Radiographer Lead Nurse Specialist Nurse MDT Coordinator

19. Clatterbridge Centre for Oncology TYA 16-24 years MDT Newly Diagnosed Notification Patient Pathway Referral to TYA MDT Coordinator / TYA Team from all peripheral Trusts MDT weekly (Thursday a.m) Medical & Clinical Oncologist Paediatric Oncologist Haematologist Lead Nurse CCO Alder Hey Macmillan Outreach Team support 16 yrs up to 19. 19 -24 Palliative Care CCO Clic Sargent Social Worker CCO- 16-24, 18 year old treated at Alder Hey AlderHey 16-17 years supported byAlder hey team. 16-24 inclusive for North Wales supported by North Wales Clic Sargent Clic Sargent Psychologist 16-24 yrs AHP’s OT & Physio Outcome of MDT sent to referring clinician, GP, hard copy in notes. Member of team / lead Nurse to contact Patient / specific Specalist Nurse / Social worker / Psychologist Internal Notification MDT__________________ Hospital ______________ Patients may be referred back to MDT for discussion at any time

20. Referral and outcomes Referral Form Outcomes form Distribution of outcomes to referring clinicians, GP, MDT members Patients can return to MDT at anytime

21. Principal Treatment Centre CCO Associated centres- RLUH (haematology), Alder Hey, Walton Development of Teenage and Young Adult unit at CCO Weekly TYA MDT

22. Case History 22 year old female- single mother of three Clear Cell sarcoma of foot diagnosed 2006 Resected Recurrence in groin lymph nodes 2007- treated with resection followed by radiotherapy 2009- multiple pulmonary metastases

23. Case History (contd) Treatment options – palliative chemotherapy For discussion with patient Patient DNA clinic on many occasions in fear of discussing management and anxieties Role of Social Worker

24. Current functioning and Future Establishing functioning of MDT Develop the roles of the members Ensure patients receive best specialist clinical care and support Ensure clear clinical pathways Entry into Clinical trials Smooth transition to adult services

25. Thank You Any Questions?