Claire Palles-Clarke, Clinical Nurse Specialist
Although cancer in 16 to 24 year olds is responsible for less than 1 per cent of all cancer diagnosed in the UK (Pollock and Birch 2008), it is the most common cause of non-accidental death in this age group.
There has been an expansion in the availability of services for Teenagers and Young Adults(TYA) with cancer over the last few years generated by the publication of the National Institute of Health and Clinical Excellenc e(NICE) Improving Outcomes Guidance(IOG) in children and young people with cancer (NICE 2005). The guidance has driven the agenda for cancer service delivery for this age group and recommends that TYA patients are cared for in an age appropriate setting in a designated principal treatment centre (PTC).The PTC would then be able to offer not only an age appropriate environment but comprehensive psychosocial support, peer support and entry in to clinical trials, all of which would be facilitated by health care professionals with expertise with this age group. The guidance (NICE 2005) also recognised that changes to existing ways of working were likely and that unique clinical collaborations would cross cancer site-specific adult practice models and shared care paediatric models
In 2011, further implementation of the Children and Young People IOG necessitated the designation of a shared care hospital in each Cancer Network(CN) for TYAs with cancer(South East Coast Specialised Commissioning Group 2011). Each designated shared care TYA service will then set up their service to establish high quality, expert care that will be responsible for delivering the care pathway for all TYAs with cancer in that cancer network. The Royal Surrey County Hospital(RSCH) Foundation Trust was designated in January 2012 as a shared care TYA service for ages 16 – 24.
I was appointed in February 2012 as Macmillan TYA Clinical Nurse Specialist (CNS) with a remit to set up and develop this service for the SWSH(Surrey, West Sussex and Hampshire) Cancer Network’s population. My background is in adult oncology and have worked at the Royal Marsden, Guys and St. Thomas’ NHS Trust and Barts before becoming the Lead Chemotherapy Nurse at RSCH for 5 years. Most recently, I was the Cancer Care Tutor at Surrey University where I was responsible for developing both pre and post registration cancer modules. I see this post as a new challenge to focus on the specific and complex needs of this young group of cancer patients.
This will be a new way of working for members of the site specific MDTs as ‘shared care’ is not a model used in adult cancer care. This will be particularly pertinent to patients age 19 -24 who will be offered the option of receiving their treatment at a PTC(Royal Marsden Hospital) or at their local provider of shared TYA care(RSCH).
Therefore all 16 – 18 year old patients will be referred to RMH with some elements of shared care and all 19 – 24 year old cancer patients will be given the choice of their place of care and the aim is for anyone with cancer in this age group to only be treated either in a PTC or a shared care TYA hospital.
All patients will be discussed at the TYA multi-disciplinary(MDT) meeting at RMH which enables these patients to have access to age appropriate psychosocial care and clinical expertise and to be entered on to the National TYA database. Patients will also be reviewed at the monthly RSCH TYA MDT to ensure that all clinical and supportive needs are met and progress reviewed. This review will include the follow up element of care to help meet the rehabilitative needs in order for the TYA to regain independence and support when returning to education or the workplace.
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