VERSION 6 28/5/14 consultees
ROYAL FREE AND UNIVERSITY COLLEGE
MEDICAL SCHOOL DEPARTMENT OF
MENTAL HEALTH SCIENCES
University College London
Charles Bell House
London W1W 7EJ
Tel: 0207 679 9367
Consultee Information Sheet
Quality of life in care homes study
You are being invited to act as a ‘consultee’ for ________________ because s/he is
unable to make a decision for him/herself. You are being asked to advise the
researcher about this person’s wishes and feelings and whether they would have
wished to join this research. Before you decide, it is important you understand what
being a consultee means, why the research is being done and what it will involve.
Please take time to read this information carefully and talk to others about the study
if you wish. Ask us if anything is not clear or if you would like more information. Take
time to decide whether you wish to be a consultee.
What does it mean to be a consultee?
A consultee is someone who knows a person who doesn't have capacity well and is
willing and able to offer an opinion on what that person’s wishes would have been if
they were still able to decide themselves whether to take part. You do not have to act
as a consultee if you do not want to. If you decide to act as consultee, you will be
asked to sign a Consultee Form. If you think that this person would not have wanted
to take part, then the researchers will respect this. Please remember that you are not
being asked for your personal views on the research but only what the person’s
wishes would have been were they being asked to take part in this research. Think
about the broad aims of the research, the risks and benefits and what taking part will
mean for this person. At any stage, you can advise the researcher that in your
opinion the person would no longer wish to remain in the study.
Why have I been asked to be a consultee?
You may have been asked because you know the patient personally, as a friend,
partner, or relative, and they would trust you to help with this decision. Or, you may
be a member of the care home staff, and you have the patient’s best interests in
mind.
About the study
We want to find out about the quality of life people with memory problems who live in
care homes experience, and what makes their quality of life better or worse. We plan
to use this information to develop a new training programme for care home staff to
improve resident’s quality of life. Before you decide whether to take part it is
important that you understand why the research is being done and what this study
will involve. Please take time to read the following information carefully and discuss it
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with relatives, friends, and colleagues if you wish. Ask us if there is anything that is
not clear or if you would like more information.
 Part 1 tells you why the purpose of this study and what will happen to the resident
you are advising us about if they take part.
 Part 2 gives you more detailed information about the conduct of this study.
Ask us if there is anything that is not clear or if you would like more information. Take
time to decide whether or not you wish to take part.
Part 1
What is the purpose of the study?
We want to find out about the quality of life people with memory problems who live in
care homes experience, and what makes it better or worse. We plan to use this
information to develop a new training programme for care home staff to improve
resident’s quality of life.
Why have I been asked?
Because the resident you are being asked to act as consultee for lives in a care
home that is taking part in the study. Fifty care homes across England are taking part
in all.
Do they have to take part?
No. It is up to you to advise on whether or not the resident would have wanted to
take part. If they do you will be given the information sheet to keep. You are free at
any point to request the person you are consultee for is withdrawn from the study
without giving a reason.
What will happen to them if they take part?
A researcher will visit the resident at their care home and ask them some questions
about their quality of life. The researcher will then visit them 4 more times over then
next year and half to ask them these questions again to see how their experiences
might have changed. We will ask for their NHS number and date of birth and use this
to collect long term data from the Office of National Statistics about their future
health.
What do they have to do?
We estimate it will take around 15 minutes for them to complete the questions about
their quality of life on each of the five occasions. Not all participants will be able to
answer these questions, and we will ask your advice about this. For all residents
taking part, including those who cannot answer questions themselves, we would like
to ask a family member or friend some questions about how they see their quality of
life (this may be you if you are their carer), and care home staff questions about their
background, health and social care and wellbeing.
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What are the possible disadvantages and risks of taking part?
We don’t expect the survey to be upsetting, but if taking part brings up issues for you
or the resident that you or they would like to talk about you can ask speak to one of
our team. You may also find it helpful to ring the Alzheimer's Society National
Dementia Helpline on 0300 222 1122. The Helpline is usually open from 9am to 5pm
Monday to Friday and Saturday and Sunday 10am - 4pm.
What are the possible benefits of taking part?
We cannot promise the study will help the resident you are advising us about but the
information we get might help us develop ways to improve the quality of life of people
with memory problems living in care homes.
What if there is a problem?
Any complaint about the way the resident you are advising us about has been dealt
with during the study or any possible harm you might suffer will be addressed. The
detailed information on this is given in Part 2.
Will my taking part in the study be kept confidential?
All interviews are confidential and the resident you are advising us about will not be
identified in any report/publication. If any person in the study tells us that they or
someone else is being harmed we will ask their permission to disclose the
information to the care home manager or other appropriate responsible person. We
respect confidentiality but cannot keep it a secret if anyone is being harmed.
Contact
Please contact Adam Kadri, Administrative Assistant on 020 7679 9367 or
a.kadri@ucl.ac.uk for further information.
This completes Part 1 of the Information Sheet. If the information in Part 1 has
interested you and you are considering participation, please continue to read the
additional information in Part 2 before making any decision.
Part 2
What if there is a problem?
If you have a concern about any aspect of this study, you should ask to speak with
Dr Claudia Cooper (principal investigator for the study) (0207 679 9250) who will do
her best to answer your questions. If you remain unhappy and wish to complain
formally about any aspect of the way you or the resident you are advising us about
have been approached or treated during the course of this study, you may contact
the Research Governance Sponsor of this study, University College London. Please
write to UCLH/UCL Joint Biomedical Research Unit, R&D Directorate, Roseheim
Wing,Ground Floor, 25 Grafton Way, London WC1E 5DB quoting study 08/0043.
In the unlikely event that something does go wrong and the resident you are advising
us about is harmed and this is due to someone’s negligence then they may have
grounds for a legal action for compensation against University College London but
you may have to pay your legal costs.
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What will happen to the results of the research study?
We intend to publish results in relevant conference proceedings and publications.
Please tell the researchers if you would like a copy of any publications and we would
be happy to send them to you when they are published. The resident you are
advising us about will not be identified in any report/publication.
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