TYA Designated Hospital perspective Wendy Ansell Macmillan Urology CNS Barts Hospital

Background Uro-oncology – specialist team for testicular & other germ cell cancers Haem-onc specialist teams Gynae cancers Breast cancers Others – e.g. ophthalmology TYA meeting 29-10-13

Structure of discussion Diagnosis Time to treatment Inpatient – ward environments Day care treatments Outpatient appointments Telephone clinics Access to trials Palliative care TYA meeting 29-10-13

Diagnosis & time to treatment Timescales to start treatment Specialist treatment or specialist surroundings?? Liaison with specific TYA team Site specific MDT discussion TYA MDT discussion Numbers TYA meeting 29-10-13

Inpatient care (1) Staff opinions Environment Facilities Nursing AHP’s Medical Other e.g. psychologists Environment Facilities Computer access Wi-fi TYA meeting 29-10-13

Inpatient care (2) Comments from patients: What they liked: Single room Accommodation for families Continuity of staff What they didn’t like: Being in a bay with older, ill people General comments – not particularly needing interactions with other patients TYA meeting 29-10-13

Day care Recliner chairs + a few rooms with 1 or 2 beds Timed appointments No separate ambulatory care currently Staff try to be accommodating Patients always seem able to “pop up to the day ward to get tests done – they’ll do it for me”! TYA meeting 29-10-13

Outpatient appointments Mixed clinics Busy Staff think this is the least satisfactory part of care – not just for TYA patients Patients don’t like the waiting They do like continuity of care TYA meeting 29-10-13

Telephone clinics / contact by ‘phone Starting these 2 telephone:1 attended clinic (not just TYA) Lots of telephone contact regarding blood test results, chasing non-attendances etc TYA meeting 29-10-13

Access to trials Disease specific from 18 years usually Where trials exist, offer entry – germ cell cancers, renal cancers Started Brightlight TYA meeting 29-10-13

Acutely ill / palliative care Sudden deterioration ITU links Palliative care after a number of treatments TYA meeting 29-10-13

Case vignettes (1) N Mediastinal GCT Urgent treatment needed “baby” chemo followed by full chemo & surgery Geographically not local Family Ward Social worker Lifestyle before & after Now… TYA meeting 29-10-13

Case vignette (2) P Metastatic poor prognosis testis cancer Treated with chemo Lived at home – Mum & brother In trouble with the law Completed intensive chemo + surgery x 3 Struggled to get job without address, home without a job etc Now.. TYA meeting 29-10-13

Summary Acute situation v. retrospective thoughts Whether treatment is outpatient alone or involves inpatient / day care Aims of treatment – curative / palliative Lack of social worker is a problem Looking back, links with TYA team have increased over the last few years TYA meeting 29-10-13

Thoughts? Comments? Suggestions? TYA meeting 29-10-13