Patient reference group for the cancer centre at Guy’s
By Guy’s and St Thomas’ NHS Foundation Trust
A Patient Reference Group was established to work alongside clinicians and managers to develop the plans for a new cancer centre at the hospital, which will open its doors to the public in 2016. This group was set up to ensure that patients’ voices were heard and members were involved in the shortlisting and appointment of the architecture and construction firms, as well as being active participants in the development of the design for the building.
The Patient Reference Group is chaired by a former cancer patient and meets bimonthly to discuss the latest developments of the building and to hear directly from and be consulted by staff representatives. This often takes the form of a clinical lead presenting to the group and asking for its advice and feedback on a particular aspect of the plans, from the layout of the rooms to the way in which patients will be greeted in the building.
"This entry showed strong leadership from a ‘real’ patient and was a lovely example of a patient’s involvement. We were impressed with how the programme showed the genuine, tangible difference that patients are making in the development of the Cancer Centre at Guy’s."
Empowering young patients to self-manage cancer treatment through ambulatory care
By University College London Hospital
Ambulatory care for teenagers and young adults (TYA) was introduced at University College London Hospital as an alternative, mobile approach to the delivery of cancer treatments that would traditionally be undertaken within the inpatient setting, including high dose chemotherapy and stem cell transplantation. This model of care is facilitated by portable infusion pumps and patient and family self-monitoring facilities alongside overnight stays in a residential setting or their own home. Ambulatory care in this context aims to normalise daily life during cancer treatment as much as possible and care is shaped around the TYA and their family.
"This was a good, simple idea that was cost-effective to implement and an obviously well redesigned service. It gives young patients more freedom and puts them in control of their treatment."
Brain tumour information portal
By Cancer Research UK, the brainstrust and the National Cancer Registration Service
This project aims to drive patient engagement in cancer care via the brain tumour information portal, a secure website that provides patients access to their records held by the National Cancer Registration Service (NCRS). The concept was established following a need voiced by the brain tumour patient community and has been developed in close partnership with patients and clinicians. The NCRS collects information about all cancer patients resident in England, including histopathology reports, summaries of imaging reports, data on radio- and chemotherapy and Patient Administration System data. Patients can make their own notes, record the contact details of their clinical team(s) and undertake quality of life surveys.
"This was patient-driven, very topical and could well be the future. The idea that patients can access their own records is important, but the initiative was also very sensitive to patient safety and took the time to educate nurses. Consequently it was able to show good indicators of success."