Friday 13th July 2012
Patient involvement is high on the agenda for many NHS Trusts, particularly after the results of the Department of Health’s National Cancer Patient Experience Survey were published in 2010
Following the survey, University College London Hospitals NHS Foundation Trust (UCLH) worked with Macmillan to build patient involvement into an integral part of its cancer service planning. This led to the creation of a Patient Experience Board to shape the services at the newly opened UCH Macmillan Cancer Centre. The board has already helped develop the interior design and IT systems.
The board is made up of patients in active treatment or recovery, and is chaired by Juliet Bouverie, Macmillan’s Director of Services. Juliet also brings her personal experience as a carer for her partner John.
Juliet says, ‘UCLH were keen to set up a strong process for patient involvement because although they are a leading teaching hospital, and have a world-class reputation for treatment and research, they recognised they were not always providing a service that’s patient-centred.’
Juliet adds that this disparity between excellent treatment and holistic support is something she’s experienced herself.
‘Last year, John died of a brain tumour. For five years he was treated exceptionally well at UCLH. But whenever he was discharged we felt abandoned and there was no real follow-up support. ‘We’re in a unique position, in that the board reports in at a very senior level. More than half of our members are receiving treatment, so their experiences are very relevant.’
The board has developed four priority areas where it will work with the Trust to ensure patient experience is included:
1. Helping shape the centre’s services, design, look and feel so all are designed around the patient and provide world-class treatment, care, information and support.
2. Ensuring people with cancer are treated with dignity and respect. One of the projects related to this priority is a communication skills training course for all staff at UCLH who interact with people with cancer.
3. Making sure services are joined up so no person with cancer at UCLH falls between the gaps and returns home feeling abandoned or isolated.
4. Giving people written information at key points in their cancer journey and helping them interpret anything they don’t understand.
Benefits for other Trusts
‘Our aim is to get UCLH placed in the top 25% of hospital Trusts in the 2013 patient experience survey. I believe the board’s input will be key to this,’ Juliet says.
‘Macmillan also hopes the overall partnership will help create a blueprint for other Trusts of how to develop and redesign services to improve the patient experience.’
Shaping your own services
Macmillan can send you an overview of how the Patient Experience Board was set up, which includes useful hints and tips. Please email Jagtar Dhanda, Inclusion Programmes Lead.
A word from Ciaran Henderson, Patient Experience Board member
‘I’m on my third round of chemotherapy. Two weeks before my appointment, for the first time, I received a letter with the date of my appointment, an introduction as to what to expect, a welcome letter from Macmillan, and my blood form. Previously my preparation would be a short discussion with my consultant, then turning up to the hospital.
‘This is the first time ever that I was reassured that someone in chemo knows I am coming, and that my anxiety, as a patient, was being considered.
‘These small steps make the cancer journey easier.’