A couple of years ago the cancer networks and the NCRI led the way in patient and public involvement in the NHS.
Since April 2013, the cancer networks have reduced in number and each now covers a large geographical area. The former North Trent Network Head and Neck group is gone, for all practical purposes, and with it the input of service users. Now the preferred model for patient involvement is through virtual groups, communicating online.
Cancer research in the UK is led by the NCRI. There are groups dedicated to promoting and organising clinical trials for each cancer site, such as head and neck. These groups have embraced the involvement of patients and carers from their inception around 12 years ago. Now the funding for this patient involvement is in doubt despite an admirable record of achievement, acknowledged world-wide.
The driver for both the changes described above is the shortage of funding. Since its launch in 2012, NHS England has trumpeted its belief in the value of patient and public involvement. It is surely time to demonstrate that commitment to PPI by funding it appropriately.