Written responses consent form

The aim of the study is to understand how we might improve the experience for adults who are receiving care in the last days of their life in our hospitals, as well as the experience for those who are important to them. We are particularly focused on the last days and hours of a person's life, and after the person has passed away.  

End-of-life care values and needs can differ by religion and culture and from person to person. We are not certain that we always get that care right in our hospitals, and we would like to understand more about what we can do differently to support more people and those important to them in the way they would choose to be supported. We are particularly interested in understanding more about the needs of people from underrepresented religious and ethnic groups considering the diverse make-up of the communities we serve across North-West London. 

We would like to speak to people with lived experience of someone important to them dying in an Imperial College Healthcare NHS Trust hospital (Charing Cross, Hammersmith, Queen Charlotte’s and Chelsea, and St Mary’s hospitals) longer than three months ago and up to seven years ago. Please note that we are not aiming to speak with anyone who is currently experiencing end of life care. In particular, we are interested in speaking with people from underrepresented religious and ethnic communities. 

Please note: This is a research project. The people conducting this research are not medical professionals. They are researchers and are not able to answer any medical questions you might have. If you have any concerns about the medical care that you have experienced, you should contact the Patient Advice and Liaison Service (PALS) and complaints team at Imperial College Healthcare Trust  

Imperial College Healthcare NHS Trust is working with the Helix Centre, part of Imperial College London’s Institute of Global Health Innovation, to undertake the service evaluation study. 

Imperial College Healthcare NHS Trust provides acute and specialist healthcare for over one million people every year across their five hospitals in central and west London - Charing Cross, Hammersmith, Queen Charlotte’s and Chelsea, and St Mary’s. The Imperial College Healthcare NHS Trust teams involved in this study are the End of Life & Palliative Care, and User Insights teams. The Helix Centre is a research lab located in St Mary’s Hospital that designs and evaluates products and services that tackle major health challenges by putting people and their needs at the centre of what they do. 

The work has been funded by Imperial Health Charity.

It is your choice to take part. If you choose to, we will give you this information and consent form to keep. If you decide to take part in our research you are still free to withdraw, modify your consent or withdraw your consent at any time, without giving a reason, by getting in touch with us. This will not affect your current or future care. If you change your mind about taking part at any point and for any reason, including after the interview, you can withdraw by emailing  imperial.userinsights@nhs.net You can also email with questions or to ask for more information.  

Please note, after the research has been completed, the researchers will develop a research insight report which may include anonymous quotes and insights collected from the information that you shared with us – depending on what you consented to. When the report is created, it will not be possible to remove anonymous information, however, please feel reassured that the information in the report will be completely anonymous.  

We would like to invite you to complete a short form that has questions about what your experience of end-of-life care was like in our hospitals and what could be improved. We want to understand what good care would look like to you and why, and how we could do things differently and why. The questions in the form will also focus on what you would expect, need, and value in hospital care during the last weeks, days, and moments of life in our hospitals.  

With your consent, we would like to use your answers to help inform what changes we need to make to the service. To maintain your confidentiality, we will adhere to the Data Protection Act 2018 and Imperial College Healthcare NHS Trust data protection policies. That means any information that may allow others to identify you will be removed, and all notes will be deleted at the end of the study.  

We will delete your contact information and personal data after six months if you express that you do not wish to be contacted in the future about further end-of-life research opportunities.  

After you have completed the form the study team will bring together the findings from the study. These findings will be used to help form recommendations for Imperial College Healthcare NHS Trust, to change the way care is delivered in the last weeks and days of life and after death. 

With your permission, we may anonymously (so that you are not named and cannot be identified) use your responses in our report, future studies, and/or publications. 

The benefit of participating in this study will be to help us make positive changes to end of life care across Imperial College Healthcare NHS Trust, making a difference to the experience of many other patients and those important to them. You will also receive a £25 “One4all” voucher valid at a range of stores for taking part.  

The possible consequence of participating in this study is that you may feel uncomfortable, emotional and/or upset because of the questions asked in the form. To minimise this risk, you may also choose to stop filling out the form at any time or ask to speak with a Mental Health First Aider during or after when you are filling out the form who can be contacted at j.chan@imperial.ac.uk or 07561 873711.