JPAC Joint United Kingdom (UK) Blood Transfusion and Tissue Transplantation Services Professional Advisory Committee

Disabled Mother

Obligatory1. All mothers must:
a) Fully understand the donation process

b) Give their informed consent to the process and to the testing of their blood for diseases that may affect the suitability of their baby's stem cells/tissues for use

2. Third party interpreters:
If they are to be present at any part of the selection procedure were there is an exchange of confidential information between the mother and the qualified health professional, they must:
a) Understand the requirements of the Human Tissue Act (HTA) relevant to the donation process
b) Not be personally known to the mother.
DiscretionaryMothers with difficulty in reading:
Ensure by questioning the mother that they:
a) Understand and fully complete the tick-box questionnaire

b) Give valid consent to donation and to the testing of their blood for diseases that may affect its suitability for use.
See if RelevantSelf-Catheterization
Spina Bifida
Additional InformationThe Services are aware of their duties under Disability Discrimination Legislation and will, whenever and wherever reasonable, try to provide facilities for individuals whose first language is not English, or who have other difficulties in communicating. Every mother must:

be provided with accurate educational materials, which are written in terms which can be understood by members of the general public

complete a health and medical history questionnaire and undergo a personal interview performed by a health professional

provide written informed consent to proceed with the donation process which must be countersigned by the qualified health professional responsible for obtaining the health history.

A health professional may assist a mother in the completion of the health and medical history questionnaire and in understanding the consent statement and any other information provided by the Blood/Tissue Service. To facilitate comprehension it is permissible to use alternative formats (e.g. audio, Braille, computer or alternative language) for the information leaflets, the health and medical history questionnaire and consent statements. The mother must be able to clearly demonstrate they have understood this material. At present there is no standardized way of assessing comprehension so this will be a personal judgement made by the health professional.

Use of third party interpreters.
It is permissible for any third party to act as an enabler by helping to reassure the mother and to assist in establishing effective communication between the mother and the health professional. The third party must not however be present during any exchange of confidential information, unless they are not personally known to the mother and understand the requirements of that part of the HTA relevant to the donation process. Confidential parts of the process include the evaluation of the health and medical history questionnaire, the medical interview and the obtaining of valid consent. Any third party, with the permission of the mother, may accompany the mother through other parts of the donation process that do not include the exchange of confidential information.

Rationale.
There is concern that the use of third parties during any exchange of confidential information between the mother and the health professional may compromise the confidentiality of the mother and the safety of any donated material. Interpreters are often part of a close community, or a family member, and this may inhibit or embarrass the mother in any confidential exchange of information. This may result in the non-disclosure of sensitive information that could affect the individual's eligibility to donate. If a third party is not fully aware of the relevant aspects of the HTA this may make the interpretation of information incomplete and potentially put both the mother and the donated material at risk. There is also a requirement to communicate the results of any testing performed by the Blood/Tissue Services that may be of relevance to the mother or her baby's health in a way that protects their confidentiality. The continuing availability of an independent interpreter, to maintain confidentiality, should be taken into account when deciding if an individual mother may be accepted.
Reason for ChangeThis is a revised entry to clarify the use of interpreters by the Blood & Tissue Services.

Update Information

This entry was last updated in
TDSG-CB Edition 203, Release 02