Service Mapping for 16-18yr olds with cancer Sally Burnell CNS for TYA shared care

Gaps in the service?! Lots of anecdotal stuff about gaps in service provision for yr olds Decided it would be helpful to do a simple survey (fact finding exercise) Starting with Children’s Community Services across the YCN and the HYCCN

Questionnaire re Area Provision for Shared care ages 16 to 18 years Area…………………………………………. Contact spoken to…………………………. Questions 1. a) What age does your service start from b) What happens after the cut off age and where do you refer to? c) Are there any circumstances where you would continue to provide care for patients after the cut off age

2. a) What are your hours of work? b) Do you work any out of hours, i.e., evenings, weekends? c) Is on call offered as standard? d) If on call is offered, who to and in what context? e) If no to Q 2c, is on call provided under any circumstances 3. What geographical area do you cover? 4. Do you provide palliative care? If yes, how is this arranged/managed?

5. What services do you offer? Blood taking (central and peripheral) Management of portacaths/ Hickman Lines IV antibiotics Giving Bolus chemotherapy NG/gastrostomy tube management Catheter management Changing dressings Wound care Sub cut injections 6. Any other services not mentioned?

Analysis 15 Children’s community nursing teams questioned which included the Hull Acute Oncology CNS Of those 15, 12 would see patients up to at least 18 years 3 of those 12 would extend that if in full time education 4 of the 15 would take up to 19 years without question 1 of the 15 teams stated they would continue care if still under Paediatric Consultant 3 teams only took referrals up to 16 years but 1 of those would continue up to 19 years if in full time education 2 of the 15 teams stated that they would negotiate taking a 17 year old referral if their treatment was likely to be lengthy, i.e. Leukaemia treatment.

Analysis Hours of work varied greatly ranging from 8am- 7pm with many combinations in between 2 teams provide cover until 7pm 1 team offered evening cover on a flexible basis and another team offered evening cover as part of an on call service. 5 teams provide weekend cover.

Analysis 13 of the 15 teams do not provide an on call service 2 of the 15 teams do. However…… 10 of those 13 teams would provide on call and out of hours cover for end of life care. Area covered …………!

Analysis 6 teams provided all the services we asked about 4 could not give IVAB’s but 3 of those 4 teams could give IV bolus chemo 4 teams could not give IV bolus chemo 1 team could not give s/c injections 2 could not provide catheter care 2 could not do peripheral bloods 1 team was not commissioned to provide wound care and do dressings!

Summary Interesting exercise! In patient services are also inconsistent across the region. Although there is clearly good community service provision for our 16 – 18 year olds across the region it can be on a very ad hoc basis, heavily reliant on the good will of many. How long can that level of service be maintained in current financial climate? Who is taking responsibility for that? What about Adult Community Services?!