For better end of life care

The QUALYCARE study aims to examine the quality of care provided to people in their last stages of life.  The study is being carried out in different parts of London, including Bromley,  Islington, Sutton & Merton and Westminster. The findings are increasing our knowledge of the quality of care and are being used to help improve local services. 

Information leaflet
To GPs and local care services
Meet the team
Contact us
Feedback form

618 people have already helped in the study

We are very grateful to all the people who, having recently lost a friend or relative to cancer, have taken part by completing our questionnaire.

If you received a letter inviting you to take part you can still do it

 If you cannot find the questionnaire or the freepost return envelope, please call our research team on 0207 848 5628.

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UK policy makers and local health care teams hear results

We have run seven sessions where we presented and discussed the results with the project steering group, representatives of the Department of Health and local NHS services including health care teams in the community, hospitals and hospices. We provided all four Primary Care Trusts with a summary of the results in their own area. QUALYCARE is informing care improvements both nationally and locally.

 Tessa Ing, the Lead of the National End of Life Care Team at the Department of Health, said:

 “The QUALYCARE study adds a whole new layer of sophistication to our understanding of how people are cared for at the end of their life. We will use this to help the NHS develop the services which people really want and which will provide the best experience for them and their families.”

 
Pilot phase published in Palliative Medicine  

The contribution of 20 people who participated in the pilot phase has greatly helped to advance the study and to unpick some of the key areas of end of life care that need improvement. The scientific journal Palliative Medicine published the reports.

1. Higginson IJ.  Hall S.  Koffman J.  Riley J.  Gomes B. Time to get it right: are preferences for place of death more stable than we think? Palliative Medicine 2010.  24(3):352-3.

In the pilot study, we found that most patients had a preference for death to take place at home or in a hospice, but preferences were met only for a quarter. Most relatives shared the patient preference and only three changed their mind in the 3 months before death. If family preferences are as stable and in tune with patient preference as our findings suggest, there is little excuse not to offer and provide the care needed for patients to die peacefully where they wish to be.

2. Koffman J., Higginson IJ, Hall S. Et al. Bereaved relatives' views about participating in cancer research. Palliative Medicine 2011 May 23. [published online ahead of print]

As the study developed, it was important to examine how relatives felt about taking part in the study. We found that 11 out of the 20 participants in the pilot phase found it helpful to participate. Some thought the survey was helpful to them because they shared their experience (in the words of one of the participants, it “felt like a therapy in itself”). Six did not think the survey was distressing and five said that although it brought back memories it was good to take part since they could help others in a similar situation.

QUALYCARE at 12^th Congress of the European Association for Palliative Care

In April 2011 our study coordinator, Barbara Gomes, presented initial findings at the 12^th Congress of the European Association for Palliative Care (EAPC) . She compared the experiences, symptoms and problems (e.g. sense of peace, pain control and family distress) for people who died at home with people who died in hospitals, hospices and care homes.

National Council for Palliative Care highlights QUALYCARE

In their second monthly Policy Round up, the National Council (May 2011) highlighted the work of QUALYCARE: “it will enrich the evidence base as to what really matters to families and friends in the last months of their loved one’s life and what the lasting impact is when people’s wishes are not met”.

 
Participants get preview of results (January 2011)

People who took part in the study were the first to receive a preview of the results. We found out great stories where care was exemplary and bad stories where things did not go well. There are lessons to learn with every individual story. If you took part in the study, did not receive the results preview and would like to, please contact us.  

Study protocol published in BMC Cancer (August 2010)

The methods used in the QUALYCARE study have been published in the scientific journal BMC Cancer, and are freely available online here. This aids transparency and is helping others conducting research in this sensitive and complex area.
 

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More information about the study

If you are looking for more information about the study, please read our information leaflet. You can also contact our research team. The QUALYCARE study has been reviewed by an independent group of international scientists and approved by an NHS research ethics committee.

Do you wish to find out more about bereavement and sources of support?

Dealing with the loss of a loved one is not easy. Bereavement can be a distressing experience and remembering the last months of life of a relative or friend takes up time and energy. Writing or talking about it may help but it may also bring back painful memories.
The Royal College of Psychiatrists has produced a leaflet with clear and well-researched information for anyone who has been bereaved, their family and friends, and anyone else who wants to learn more about bereavement. In this leaflet, you will find information about

• how people normally grieve after a loss
• unresolved grief
• places to get help
• other sources of information
• how friends and relatives can help

More information and translations into Chinese, Urdu, Hindu and Spanish are available through the Royal College of Psychiatrist's website.

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