Positive feedback for real time surveys by Lincolnshire patients receiving end of life care

Apr 30, 2014

A research project conducted in Lincolnshire, aimed at capturing feedback from people receiving care in the last year of life in real time using electronic tablets has received positive feedback, helping patients and their carers share their experiences of care more quickly and easily.

The 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. This 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.

Listening Differently to Users, is aimed at gathering up-to-date, reliable feedback from patients and their carers about their experiences of care using electronic tablets. 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.

Lincolnshire was chosen for the pilot due to its good record of strong interagency working between different end of life care service providers.

The pilot took place in two phases between 2012 and 2013 with a total of more than 560 patients, residents and family carers providing feedback. They were interviewed in 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. The survey, which included questions tailored to each different care setting, was developed with input from Ipsos MORI, in conjunction with care providers in Lincolnshire and patient forums.

The findings were very positive, with patients, as well as their family members and carers, welcoming the opportunity to share their experiences demonstrated by relatively high engagement levels in completing the survey. The use of volunteers in supporting patients to complete the survey was found to be very important. It meant patients felt at ease enough to be completely honest, enabling any immediate concerns to be raised quicker, and leading to more in-depth patient feedback.

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.

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).

Customer Research Technology Ltd (CRT) were contracted to provide technological expertise and used their ViewPoint patient and carer feedback systems and expertise to support the project. CRT subcontracted part of the work to Ipsos MORI, which provided some input into the questionnaire design and also led some evaluation of the pilot.

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."

Notes to Editor

  • A pdf version of the pilot project report is available on our website.
  • Help the Hospices is the UK’s leading charity for hospice care which supports and champions the work of 219 hospices across the UK
  • Hospices provide vital care for people with terminal illnesses and life-limiting conditions and also support their families and carers.
  • Marie Curie is the leading charity providing care to people with any terminal illness in their own homes or in one of its nine hospices. The charity is also a leader in research into the best ways of caring for people with a terminal illness. In addition to this the charity designs and advises on end of life services and works to ensure that the best possible care and patient choice is at the heart of commissioning end of life care across the UK. For more information visit www.mariecurie.org.uk
  • NHS Improving Quality brings together a wealth of knowledge and experience gained from several previous legacy organisations, to provide improvement and change expertise to help improve health outcomes for people across the NHS in England. www.nhsiq.nhs.uk
  • CRT were contracted to provide the technical expertise and conduct the real time survey, process the survey data and share the survey findings. CRT subcontracted Ipsos MORI to provide advice regarding questionnaire design for the real time survey.
  • Ipsos MORI was also responsible for qualitatively evaluating the real time survey. They did this via a mix of face-to-face observations, face-to-face interviews and telephone interviews with staff and volunteers responsible for administering and managing the survey, the project manager and CRT staff. The evaluation fieldwork took place between September and December 2012, and July and October 2013. In total 36 interviews were conducted. Ipsos MORI researchers also observed two feedback meetings with those administering the survey and the Steering Group.
  • The findings in this press release are based on the report ‘Listening differently to users’, authored by Help the Hospices, Marie Curie Cancer Care and the former National End of Life Care programme (now part of NHS Improving Quality) and not taken directly from the survey results compiled separately by CRT or the evaluation findings from Ipsos MORI.

Media enquiries

For further information, please contact Suzanne Stevenson at s.stevenson@hospiceuk.org or on 020 7520 8296.




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