Patients Still Not Being Listened To

New Report confirms lack of progress in delivering improved patient-centred care for vulnerable patients with complex nutritional needs

A jointly authored Report (‘Nutritional Care and the Patient Voice: Are we being listened to?’) published today by BAPEN and PINNT with involvement and endorsement from nine other patient organisations1, confirms that patients and carers feel little progress has been made in delivering improved patient-centred care and worryingly with some feeling there has been a recent deterioration in care.

Despite the publication of many new reports, policies and reviews and the ongoing reorganisation of the health service to improve patient care, there remains uncertainty from many patient groups as to how much real progress has been made.  Clear recommendations published by BAPEN in 20082, which reported on general aspects of nutritional support in the context of other considerations, including; shared decision-making; tailoring of healthcare services to the patients’ needs and continuity of care.  However, despite its importance, nutritional care has not been focussed on as a central theme.

“The patient voice needs to be heard at every level of their care and across all spectrums of nutritional care; from their first interaction in general practice to interaction with healthcare professionals in the hospital setting and for those requiring long term medical care.  There is a lot of talk about listening to patients, but it is clear that this is not happening.  We believe that patient organisations such as ourselves and those who collaborated with us on this Report, along with patients, families and carers can contribute to improving continuity of care if we are involved and included in a meaningful way – particularly in reducing emergencies and where patients are in transition between services.”  Carolyn Wheatley, Chair – PINNT

BAPEN and PINNT collaborated with nine patient organisations and two NHS Trusts to compile the Report ‘Nutritional Care and the Patient Voice: Are we being listened to?’, which looked to address three key issues:

  • whether adequate priority has been given to nutrition and hydration services and whether they have improved in the last few years
  • whether or not the patient experience associated with nutritional support has improved
  • whether or not inequities in nutritional care have been adequately addressed

A questionnaire to obtain the views and insights of patients/carers on these three areas of health and social care was devised and sent out to the collaborating organisations, with a follow up round-table meeting held to discuss the results and clarify issues raised prior to the publication of the Report.

All of the organisations that collaborated in the compilation of the Report agreed that much more needs to be done to improve the management of patients with nutrition and hydration problems.  Patients, families, carers and patient organisations represented in this Report stand ready to be involved directly in improving patient care.  They believe they are a valuable resource with whom closer interaction can benefit healthcare organisations.

“Having the opportunity and time to listen to patients and carers at the round table discussion was invaluable in sharing experiences and understanding what it really feels like to access nutrition services. Empathy took on a new meaning as we all began to fully understand the importance of how we make connections with patients and their carers. Some of the most important parts of the discussion for me were the in-depth conversations and the ideas that were generated about efficient use of resources and removal of waste from the system. The research revealed that patients are clear and concerned about elements of care pathways that don’t add value, and that they have real understanding about the complex challenges that we as healthcare professionals face in the daily delivery of healthcare.  They have valuable contributions to make in terms of  and (most importantly) their proposed solutions for improvements and integrated care. Listening and working closer with patients would benefit us all.   Patients are most definitely a valuable resource with whom closer interaction could benefit all.”  Dr Ailsa Brotherton, BAPEN Quality Group


Tragic outcomes summarised last year by the Francis Report (and emphasised in the Berwick Report) have raised specific concerns about nutrition and hydration and highlighted the need for a culture change based on leadership, training and information to improve patient experience and safety and the importance of patient dignity and involvement.  The findings of the Nutritional Care and the Patient Voice Report further confirmed the need for action and acted as a trigger for the development of BAPEN’s new ‘Malnutrition Matters: a commitment to act’ guide, also launching today3.  The new guide, sets out clear and simple priorities for each level of the healthcare system to ensure appropriate commissioning and delivery of good nutritional care.





COTS 2024