24 Mar Be more challenging in involving patients
Bob Smith, volunteer advocate, and Kathleen Gillett of Dorset Macmillan Advocacy attended the recent ‘Dorset Cancer Alliance 2016 and Beyond’ conference.
The Dorset Cancer Alliance (DCA) comprises the three Dorset NHS Foundation Trusts, the Dorset Clinical Commissioning Group and the Dorset Cancer Patients Group. The other volunteers who attended and brought the patient perspective were Paul Grant, Trustee of Living Tree Bridport, and three members of Dorset Cancer Patient Group including group chair Emma Willis.
Emma (who is also Director and Founder of Shine Cancer Support) made a presentation on Improving Cancer Patient Experience. Emma concluded ‘we need to be more challenging and more brave in involving patients at higher levels, ask for more from patient representatives, ask the question ‘How can I utilise the experience of patients to help with this?’ aiming to build strong and inclusive patient involvement in cancer services.
The Dorset team for Macmillan Cancer Support was there. Paula Bond, Macmillan Development Manager, has been instrumental in arranging funding for several services (including the advocacy service) and research/scoping projects locally, and Tracy Street, Macmillan Involvement Coordinator, has given capacity building support and guidance to Dorset Cancer Patient Group and to the independent cancer self help and support groups.
It was a full afternoon which included presentations from clinicians, commissioners and representatives of the Wessex Strategic Clinical Network. We considered the current situation in Dorset and related it to the Wessex and the National Cancer Strategy. Another factor in Dorset to take in to account is the current Clinical Services Review by the CCG.
Breakout groups discussed the different stages of the cancer journey and priorities for improvement. One group focussed on patient experience and chose ‘Communication’ as the main priority: Both ‘how people are communicated with’ and ‘what information is communicated’. We heard an example of a patient receiving their diagnosis in a way that left them both shocked and confused. Macmillan GP Lavina Sakhrani-Clarke was interested to discuss the idea of letters from secondary care clinicians traditionally sent to GPs actually being addressed to the patient instead and written in layman’s terms. The GP would still be copied in and would, she felt, have a better chance of understanding the content.
Kathleen explained to the discussion group how volunteer advocates can support people at appointments and in understanding the content and implications of the letters they are sent. Some advocacy partners that we have supported in Dorset have told us they were afraid to read their letters or printed information, keeping them tucked away out of sight, until they had their advocate with them to discuss the contents.
Kathleen Gillett, Dorset Macmillan Advocacy