Amanda Dixon asks looks at routine testing and information given
Is informed consent a thing of the past? Is it another one of those things that is being lost in the issues of time constraints of appointments or getting lost in the vast amounts of ‘information’ being given to women at the first appointment?
When I worked as a midwife I had it instilled in me that women needed to be totally sure about what we were asking to do and why. I would spend a deal of time discussing the issues of screening, what we were screening for, how and why and asking questions: ‘Are you happy for this? Do you need more time to think about it? Is there anything further you want to ask? Remember these are offers of screening and you can opt out of any of these tests – do you wish to opt out?’ I am now becoming worried that with the all pressures in the system of appointments on time, the fact that screening is being done earlier and earlier in pregnancy that women just aren’t getting enough information. Why am I worried?
I am, amongst other things, a member of the Independent Placenta Encapsulation Network, offering placenta encapsulation and other placenta services. Part of the booking process for these services is to ask if the woman has been tested for HIV or for Hepatitis, and if the results were positive or negative.
I seem to have an increasing number of women who tick the box on the booking form saying they have not been tested for these things. At this point I always ring the woman to discuss. On further questioning they have all had the routine blood screening at the beginning of their pregnancy and had not been aware that these were some of the things they were being tested for. When planning on handling a placenta it is important I have this information and if a woman is HIV or Hepatitis positive then I can’t risk my equipment getting contaminated (even though I always use universal precautions and approved cleaning methods). I am shocked that out of the women who have ticked to say not tested, 100% had not declined routine blood testing and had had the full remit of blood screening, having no idea what they were being tested for. They have all apologised to me for not realising that they had therefore been tested. They do not need to apologise to anyone – someone should be apologising to them. The conversation then moves to the ‘Well I am sure I must be negative then, as they would have told me otherwise … wouldn’t they?’
I am horrified that women are being tested for infections, that if positive can have huge implications for their future lives, with what appears to be a total disregard for the impact this may have and no regard for the concept of informed consent. This is not an isolated case, or from an isolated hospital. Surely someone needs to be saying something. I feel that women really are not truly being given all the information, but are being railroaded into following the process with limited information and limited choice. It makes me wonder if this is just the tip of the iceberg with regard to informed consent within the current NHS.
AIMS supports all maternity service users to navigate the system as it exists, and campaigns for a system which truly meets the needs of all. AIMS does not give medical advice, but instead we focus on helping women to find the information that they need to make informed decisions about what is right for them, and support them to have their decisions respected by their health care providers. The AIMS Helpline volunteers will be happy to provide further information and support. Please email firstname.lastname@example.org or ring 0300 365 0663.
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