The NHS mantra ‘no decision about me, without me’ was the theme of this, the first of the Rarer Cancers Foundation’s Patient Empowerment days, held in London, 03 June 2013.
In a day designed to empower patients by explaining that they now have an even greater right to be involved their own care and the design of cancer services, Professor Gore delivered the key note address entitled, How to work with your clinician and the role of the MDT (Multi Disciplinary Team). His presentation covered building relationships between clinicians and hospital teams; what to expect from your clinician; shared decision making; finding out about the latest treatments; obtaining second opinions; is a clinical trial right for you, and holistic disease management. He talked in depth about roles and responsibilities within an MDT and the responsibilities of the different members.
Other speakers included Research Nurse, Lynda Pyle, who gave an insight into her role working with rare cancer patients, and also explained the role of the Clinical Nurse Specialist (CNS) throughout the cancer patient’s care pathway. She stressed the need for patients to be ‘empowered’ – to be involved with their cancer treatments by asking questions, joining peer support networks and discussing difficulties and how to overcome them.
Interesting presentations were given by Helen Bulbeck, Director of Services at the charity Brainstrust and Maggie Wilcox of Independent Cancer Patients’ Voice – both demonstrated how effective the patient voice can be and gave us an insight into the workings of their organisations and how valuable the patient input is.
Valuable question and answer sessions at each stage of the day provided an opportunity for many to put forward thoughts and queries. And there were plenty of opportunities for one to one sessions with the speakers and members of RCF, too.
There will be more – Further Patient Empowerment Days are planned for later in the year at venues around the country – venues and dates have yet to be confirmed.
‘The Informed Patients Toolkit’
RCF’s new publication ‘The Informed Patients Toolkit’ was launched during the day. This details the workings and structure of the new NHS system and how to make it work for you – who is making decisions about your treatment, your options and how to access treatments your clinician wants to prescribe but which are not routinely funded. The booklet is designed to empower patients to fight their corner, with details on how to approach your local MP, local councillors, the CCG, The Cancer Drugs Fund, Individual funding requests and how to engage with the media.