Professor Celia Kitzinger and Professor Jenny Kitzinger, co-Directors of the Coma and Disorders of Consciousness Research Centre have won a major award from the British Medical Association (BMA).
They were awarded first prize for "Information on Ethical Issues" at the 2015 BMA Patient Information Awards for their multi-media online resource that provides information and support for families of profoundly brain injured patients.
With the support of the charity DIPEx and the Health Experiences Research Group at Oxford University, the Kitzingers developed a multi-media online resource drawing on findings from their interviews with 65 family members with a relative in a vegetative or minimally conscious states. The resource shows a wide range of families with different experiences and views about prolonging life at the boundary between life and death. It was used by more than 4,000 people within months of its launch and has already won awards for its impact on policy and society. It can be viewed here.
The BMA Patient Information Awards encourage excellence in the production and dissemination of accessible, well-designed and clinically balanced information. The reviewer for the BMA praised the team for creating: ‘a profoundly honest and singular resource which will offer wisdom, empathy, insight…and support to others…of great value to both families and clinicians', adding: ‘In over five years of reviewing for the awards this is the best resource I have seen’.
Celia Kitzinger attended the award ceremony on 7th September 2015, along with Jenny Kitzinger and two members of the project’s Advisory Group, Margaret Kellas and Gunars Libek (family members of a vegetative patient). Celia describes the impressive range of patient information resources highlighted by the event.
The awards ceremony was held at BMA House in London – beginning with tea and followed, after the formal ceremony, with a buffet dinner. Both offered ample opportunity to network with other people attending the ceremony, and I made new contacts – and renewed acquaintances – with colleagues working in the charity sector. Sir Al Aynsley-Green, President of the British Medical Association, spoke passionately about the shift over his lifetime from paternalistic to patient-centred care and the importance of listening to and learning from patients.
The “Information for Children” award category was an important one for Aynsley-Green who is a strong advocate of children’s rights (and only the second pediatrician to have been appointed as BMA President). The winner was the Teddington Trust with a set of story books featuring a bear, “Little Ted”, and communicating the message that children with Xeroderma pigmentosum (a genetic disorder in which the ability to repair damage caused by ultraviolet (UV) light is deficient) can live full and happy lives.
Another children’s charity, CLIC Sargent, won the “Innovation Award” for a pack on “Cancer and School Life” which includes a DVD for teachers preparing to welcome a child with cancer back to school and a lesson plan to help explain childhood cancers to children.
The “Learning Disabled Resources” award went to a booklet about lymphoma for people with learning disabilities and Headway, the brain injury charity, was “highly commended” for their factsheet about how to make a complaint about health and social care services.
Most impressive, though, was the Patient Information Resource of the Year, produced by the Motor Neurone Disease Association - an end of life guide for people with motor-neurone disease. This is close to my own interests in end-of-life decision-making, and I found the information exceptionally honest, accurate and sensitive - especially in relation to suicide and assisted suicide. At a time when assisted dying has a high political and media profile - and people with motor neurone disease feature heavily amongst those going from England to the Swiss clinic, Dignitas, to end their lives - the ability to convey frank information about the legal status of suicide, treatment refusal, palliative care and the help that is (and is not) available for patients is very important – and it is conveyed superbly here.
This award ceremony was a wonderful event that underscored the extent to which charities (in particular) are working to ensure that patients are informed, engaged and involved in their own healthcare. All the prize winning and commended entries offer patient information in a form that enables, so far as possible, user-involvement in medical decision-making and patient care.