We are working with consultants and nurses at Addenbrooke’s Hospital, Cambridge and The Walton Centre, Liverpool. They are asking their patients to think about taking part in the study. We hope to recruit about 40 patients, aged 18 years and over. As this is a small number we may not be able to include everyone who would like to take part.
What will happen if I agree to take part?
You may be asked to talk to the Study Researcher about your experiences leading up to your diagnosis. She will meet with you for about one hour at your home or another place of your choice, at a time to suit you. We would like to record the conversation with your permission.
What do I do if I want to take part?
Please complete the reply form enclosed with the information sheet you have been given and return it to the research team in the Freepost envelope provided (no stamp needed). The Study Researcher will contact you to explain the study and answer any questions you may have. If you would like to take part you will be asked a few questions about yourself. As we need to make sure we have a variety of people with different backgrounds and experiences taking part in the study it may not be possible to include everyone who would like to take part.
What are the possible benefits and disadvantages of taking part?
There are no actual benefits to taking part in this study. However, by taking part, you will be contributing to research that could help patients and doctors in the future. Some people find talking about their diagnosis upsetting; the Study Researcher who you will be talking to is very experienced and you will be free to stop the discussion at any time.
Do I have to take part?
It is entirely up to you whether or not to take part. Whatever you decide, it will not affect your healthcare in any way. Taking part is completely voluntary and you can withdraw from the study at any time.
Will my taking part in this study be kept confidential?
All information about you will be kept strictly confidential and will be used for the purpose of this research only. Information will be held at the University of Cambridge and handled, stored and destroyed in compliance with the NHS Code of Confidentiality and the Data Protection Act 1988. Your information will have your name and address removed so that you cannot be identified from it. The recording of the conversation will be destroyed once the project is complete. No-one outside the research team will know the names of the people who have taken part. The only exception to this would be if you told us about something which put you or someone else at risk of serious harm. If this situation arises we will discuss with you our intention to pass the information on to third parties. If you decide to withdraw from the study at any point you have the right to ask for any data you have supplied to be withdrawn/destroyed.
What will happen to the results of the study?
The results of the study will be published in medical journals, but you will not be identified. We will announce these publications on our website where we will also summarise our findings in plain English.
Who is organising and funding the research?
The study is being organised by the University of Cambridge and funded by the Brain Tumour Charity.
How have patients and the public been involved in the study?
Patients and the public have helped with the design of the research, and will be involved all the way through the research process. This includes managing the study, looking carefully at the results and telling everyone about the findings.
Who has reviewed the study?
All research in the NHS is looked at carefully by an independent group of people, called a Research Ethics Committee, to protect your safety, rights, wellbeing and dignity. This study has been reviewed and approved by the East of England – Cambridge South Research Ethics Committee.
What do I do if I have a complaint?
If you have any worries about the way you have been asked to take part or treated during this study, please contact Dr Fiona Walter who is leading the research team at the University of Cambridge. If you are still unhappy and wish to complain formally, please contact the service local to you listed below. They are independent to the study and will make sure your concerns are looked at properly.
Addenbrooke’s Hospital Patient Advice and Liaison Service (PALS)
Tel: 01223 216756
The Walton Centre Patient Experience Team
Tel: 0151 529 6100
Email: click here to email
What should I do if I want to talk to someone about how I feel?
Please contact the Neuro-Oncology Service at Addenbrooke’s Hospital or the Brain Tumour Service at the Walton Centre if you would like to speak to a Clinical Nurse Specialist (CNS) about any support issues that have been brought up by this study. You can also contact the Brain Tumour Charity for information and support relating to your diagnosis. Contact details are provided below.
Addenbrooke’s Hospital Neuro-Oncology Service
Tel: 01223 256246 (direct line with answer machine service)
The Walton Centre Brain Tumour Service
Tel: 0151 529 5648 (direct line with answer machine service)
The Brain Tumour Charity
Tel: 0808 800 0004 (free from landlines and mobiles)