The real-time reporting pilot project was set up following widespread recognition that there is inadequate information about end of life care services from the perspective of users, including patients and carers.
Gathering this kind of feedback has long been a challenge for many care providers, including hospices, and is an area of growing importance, particularly as receiving timely feedback from patients and responding to this is an important component of ensuring high quality care.
The pilot project involved using electronic tablets to gather up-to-date, reliable feedback from patients and their carers about their experiences. The overall aim was to enable patients to make their voice heard to staff more quickly and explore different potential uses for this feedback, such as allowing staff to make improvements to care more efficiently and resolve any issues arising promptly in real-time.
The project was a partnership initiative run by Help the Hospices, Marie Curie Cancer Care and the former National End of Life Care programme (now part of NHS Improving Quality). Lincolnshire was chosen for the pilot, which took place in two phases between 2012 and 2013, due to its good record of strong inter-agency working between different end of life care service providers.
More than 560 patients, residents and family carers provided feedback through interviews at 17 separate settings across Lincolnshire, including community hospitals, acute hospitals and hospice day therapy units.
The pilot focused on feedback from patients with different chronic health conditions including dementia, as well as the frail elderly, largely aged 65-94.
Improving the patient experience
The feedback gained through the survey helped improve the patient experience in different ways. For example, one patient surveyed was anxious about going home and being a burden on the family. The volunteer, with the patient’s permission, raised this with the staff nurse who responded immediately by offering reassurance to the patient that his concerns were understood and would be addressed.
In another example, there were several comments from patients on one ward about the temperature of the bedside drinking water as many found it too warm. Following this the ward manager arranged for chilled water to be provided.
Positive feedback
A report on the pilot – Listening to users differently – has now been published, outlining key learning and making recommendations for future actions.
The findings were very positive, with patients, as well as their family members and carers, welcoming the opportunity to share their experiences, as demonstrated by relatively high engagement levels in completing the survey.
The importance of clear and concise wording, free from professional jargon, was highlighted, as was the use of volunteers in supporting patients to complete the survey – patients felt at ease enough to be completely honest, enabling any immediate concerns to be raised more rapidly and therefore leading to more in-depth patient feedback.
Heather Richardson, Clinical Lead at Help the Hospices, said: “This project marks a significant contribution to the learning around using real-time reporting for capturing the experience of people receiving care in the last year of life. It has delivered some very encouraging results and shown that patients, their family members and carers really value the opportunity to share their experiences, and also how this feedback can help improve care.”
Ruth Bravery, Director of Community Involvement at Marie Curie Cancer Care, added: “It is really encouraging to see the feasibility of collecting feedback from patients at their end of lives, as well as from their families and carers, in a range of settings. This project has shown that people are very willing to speak about their experiences of the care they receive and demonstrates the value of doing so, ensuring that the individual needs of current patients are met and helping to improve future care.”
Anita Hayes, Programme Delivery Lead End of Life Care, Mental Health and Dementia, NHS Improving Quality, said: “Involving individuals, their families and carers is crucial if we are to truly deliver excellence in end of life care, wherever that takes place. This pilot and its results helps us to move nearer to that goal, and to enable us to work in partnership to achieve our goals at the same time, responding in real-time to any concerns and to understand how we can better improve the care delivered.”
The evaluation report, Listening differently to users, can be downloaded from Help the Hospices website.
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