Rachel's Voice campaign video: Reducing avoidable deaths of people with learning disability

Rachel’s Voice was set up to raise awareness around the poor treatment of people with learning disability in healthcare settings, to reduce the number of avoidable deaths and to drive health equality.

Fieldfisher's Just Purpose team produced this video as entry into the PILnet's Global Awards for the most innovative and impactful local project July 22-June 23. PILnet is a global non-governmental organisation that serves as a global network for public interest law supported by city law firms internationally. 

Fieldfisher contributes by providing legal advice to families and carers of people with a learning disability who have suffered an avoidable death in an acute hospital setting due to failures in medical care, whether the death has occurred in the hospital, or in the community following discharge.

The campaign is a partnership between Fieldfisher LLP and Mencap and is named in memory of Rachel Johnston, whose family was a client of the firm and supported by Mencap.

We already collaborate with clinical experts and barristers' Chambers for advice and representation are aiming to expand the campaign to include support from other legal and clinical practices. 

The cases have in common that the person who died did not receive the same or equal treatment they would have had they not had a learning disability. We highlight why these deaths happen and how practices that entrench healthcare inequality can be eliminated.

The campaign offers four key aspects:

• We offer free legal advice to:
  
  a. Bereaved families on how to make and navigate hospital complaints and/or the inquest process - in some cases representing them at inquest and internal complaints processes.
  b. Advise whether there is scope to reopen inquests or refer complaints for further investigation to regulatory bodies.
  c. Signpost where cases would be better served by others.
   
• Accessibility to information via a public facing website. Our website (rachelsvoice.org.uk) has a wealth of tailored information about inquests and hospital complaints processes. Whilst other publicly available information exists, this does not take into account the specific issues raised for deaths of those with a learning disability. Our website addresses this.
• Research: We are thematic in the cases we take on to maximise impact. We gather information from those cases and wider data to identify what the systemic issues are to support wider term change. 
• Long-term change: Where we have identified systemic issues in cases, we work to find solutions by engaging with key stakeholders at local and national level.

The following outcomes were obtained between 1 July 2022 and 1 July 2023:

• Commissioned research with the University of Liverpool to examine patterns in reporting of deaths over the past 4 years.
• Met with NHS England, the governing body for all health services in England setting out our concerns on death certification and the need for change. They have endorsed our plan of action and have supported us to implement it.
• Continuing engagement with Department of Health.
• Changes to a Health Trust's investigatory process to ensure it includes considerations specific to learning disabilities.
• Reopening the inquest into the death of a 27-year-old woman where an inquest was previously refused