British Association for Parenteral and Enteral Nutrition
British Artificial Nutrition Survey (BANS)
BAPEN
Advancing Clinical Nutrition
Information Sheet for consultee on behalf of patient lacking
capacity to consent for inclusion of their details in BANS
survey.
Who can be a “consultee?”
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Next of kin or available close family member.
Person with Personal Welfare Lasting Power of Attorney under Mental
Capacity Act (MCA), 2005
Independent MCA Advocate under MCA 2005
Anyone with knowledge of an Advance Directive or similar expression
of relevant views
Why do we need to consult you?
You have been approached by a member of the healthcare team to consult
with you about the inclusion of certain details about the patient in an audit
(survey).The patient is unable to decide for him/herself whether to consent to
inclusion of their condition to be included in the survey below. Under the
Mental Capacity Act, 2005, we must consult a consultee (you) for permission
(assent) to proceed. Before you agree on behalf of the patient, it is important
for you to understand why the survey is being done and what it will involve.
Please take time to read the following information carefully and ask it there is
anything that is not clear, or if you would like more information.
Survey Title: British Artificial Nutrition Survey (BANS)
What is the purpose of the survey?
At present, we do not know how many adults and young people over 16 years
old in the United Kingdom require artificial feeding (e.g. PEG, nasogastric tube
feeding, intravenous or parenteral nutrition) or for how long they receive it
when discharged from hospital.
The BANS survey aims to collect information about all adults and young
people who are being discharged home (or are currently at home) who require
this method of treatment. We estimate that in a single year around thousands
of adults and young people will start this treatment. Information collected
about this group will enable us to plan national services for all who need this
method of feeding in a much more effective way. It is vital that we obtain as
full a picture as possible of those unfortunate enough to be unable to give
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informed consent themselves. The procedure required to treat the patient will
already have been the subject of similar discussions to decide the “best
interests” of the patient.
Why has the patient been chosen to take part?
The patient is either about to be discharged from hospital or has now resides
in the community on artificial tube feeding and we would like to register the
patient’s details on BANS. We will be registering:
 The first and last initials (not the full name)

Date of birth
 The first part of your postcode (not the full address)
 Details of why and how long this method of feeding is needed
 Reasons why and when it has been stopped.
Does patient have to take part?
It is up to you to decide whether the patient would have wanted to participate
or not. If this information is not known, you must decide whether it would be in
any way harmful for the information to be collected. If you do agree that the
details can be entered on the register, you will be given this information sheet
to keep and be asked to sign an assent form. You are still free to withdraw
your assent at any time without giving a reason.
Your decision to withhold data from the survey will not affect the standard of
care the patient receives. However, the value of the data collected will be
much greater if you agree to take part.
What else will I need to do?
Nothing further, but we will need to consult the patient’s medical records every
6 months in order to obtain the necessary information from them. If artificial
feeding is withdrawn, we will no longer need to follow the patient’s progress.
Will the patient’s details be kept confidential?
Only the healthcare team looking after the patient will inspect your medical
records from time to time and information will be passed on to a central
register (maintained by Streets Heaver Healthcare Computing for BANS).
The details will remain confidential and will be held on a secure database
subject to the Data Protection Act and the specific rules regarding the use of
confidential data. The full name and address will not be stored. You may
wish to look up the specific permission for this survey by BANS on the PIAG
website. (www.advisorybodies.doh.gov.uk/PIAG) [PIAG stands for Patient
Information Advisory Group which has given permission for collection of this
data through BANS]
What will happen to the results of the survey?
The anonymous data will be used to provide information that will be
published in the medical literature and made available to health service
planners. Data is never used in a way which identifies individuals.
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Who is organising the survey?
The British Artificial Nutrition Survey is a part of BAPEN (British Association
for Parenteral and Enteral Nutrition) which is a charitable organisation of
healthcare professionals including doctors, dietitians, nurses, pharmacists and
patients (PINNT). (www.bapen.org.uk) [PINNT is a patients charity – Patients
on Intravenous or Nasogastric Nutrition Therapy]
Each hospital Trust in the United Kingdom will have local reporters who will be
responsible for ensuring that permission to take part has been obtained and
ensuring that the information is kept up to date. We would like to thank you for
your cooperation.
Contact for further information:
Name:
Job Title:
Contact details:
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