NICE are NASTY . there is nothing nice about NICE

The following is taken from the SANDS website.

Seeing and holding your baby – Sands concern over NICE Guidelines
03.12.09

We wanted to make you aware of a difficult situation which we have been trying to overcome over the past few months regarding the choice that parents have to see and hold their baby after their baby has died.

We are very concerned that bereaved parents in the future may not be offered the opportunity to see and hold their baby after death.

This is because current guidelines issued by NICE (National Institute for Health and Clinical Excellence) to midwifery units and to bereaved parents, on seeing and holding a baby after the baby has died, are currently open to misinterpretation.

This guideline (Clinical Guideline 45: Antenatal and postnatal mental health) consists of 4 different documents:

1. The full clinical guidelines
2. Clinical management and service guidance
3. Quick reference guide
4. Information for people who use NHS services

In each of these the wording is slightly but significantly different but the current wording in the quick reference guide, which is specifically aimed at policy makers and staff states: “Do not routinely encourage mothers of infants who are stillborn or die soon after birth to see and hold the dead infant.”

We already have evidence that one Trust in England has adopted this wording as policy for staff. As a result we are deeply concerned that this wording will be used by other Trusts across the UK if confusion over the guidelines continues.

Neal Long, Sands Chief Executive: “The lack of consistency in such influential guidance from NICE and the recommendations that imply removing choice from parents is both shocking and extremely unhelpful to both parents and those caring for them. Not every parent may want to see and hold their baby but for many (certainly every parent we see at Sands) it is simply an act of parenting.”

“We want to see all documentation from NICE, including information for parents, to carry the same information as that laid out in the original Full Clinical Guideline, `that women should not be encouraged to hold their dead baby if they do not wish to’.”

“If the NICE Guidelines continue to be misinterpreted in such a way we will be returning to the Dark Ages of maternity care where health professionals dictate to mothers what is good for them and parents are denied their most basic right to see and hold their baby, spending time with them to say hello and goodbye in their own way. The memories created at this time are the only memories they will have of their baby.”

Sands maintains that parents must continue to be offered choice about what is done when their baby dies, and that in order for choice to be real, it must be informed. Parents have a fundamental right to see their own baby, and no health professional, however well meaning, has the right to deny them this choice.

We are extremely concerned by the inconsistent wording in the NICE guidelines and the implications this may have for bereaved parents. These concerns are highlighted in an article written by Judith Schott and Alix Henley from Sands, published today in the British Journal of Midwifery.

A shortened version of the article can be found below which outlines our position on the issue of the NICE guidelines.

NICE GUIDANCE ON SEEING AND HOLDING A STILLBORN BABY
The practice of offering parents opportunities to create memories and, in particular, to see and hold their babies after death, arose out of the anguish of those who had not been allowed to do so. In response, Sands has worked with health professionals over many years to promote a range of choices that parents can make, including seeing and holding their baby.

However in 2007, NICE published Clinical Guideline 45: Antenatal and postnatal mental health. This consists of four documents, each of which makes different statements about seeing and holding a stillborn infant:

1. The Full Clinical Guideline (369 pages) states, "The findings of [Hughes et al 2002] suggest that women should not be encouraged to hold their dead baby if they do not wish to” (Section 6.2.4 - page 196).

2. Clinical management and service guidance (48 pages) states, "Mothers whose infants are stillborn or die soon after birth should not be routinely encouraged to see and hold the dead infant” (Section 1.3.1.4 – page 16). “…if they do not wish to” has been omitted and “routinely” inserted.

3. Clinical management and service guidance: quick reference guide (21 pages) states, “Do not routinely encourage mothers of infants who are stillborn or die soon after birth to see and hold the dead infant” (Page 9).

NICE (2009) states that a quick reference guide “summarises the recommendations in an easy-to-use format for health professionals”. So this is the document most likely to be read by policy makers and practitioners. Indeed, Sands has evidence that at least one Trust has adopted the wording in the Quick reference guide as policy for staff.

4. Understanding NICE guidance: Information for people who use NHS services (27 pages) reads, “If your baby is stillborn: Although it is a rare event, sometimes babies are stillborn. You should be offered a chance to talk to a healthcare professional if this happens. But it is now considered unhelpful for women to see and hold their babies, unless they particularly wish to do so” (Page 9).

Such inconsistent guidance from an influential organisation is completely unacceptable, as are recommendations that imply removing choice from parents.

It is worth noting that in Postnatal care: Clinical Guideline 37 (2006) NICE states, “The views, beliefs and values of the woman, her partner and her family in relation to her care and that her of baby should be sought at all times…. Women should have the opportunity to make informed decisions about their care and any treatment needed…”.

It is hardly surprising that few newly bereaved parents think of asking for ways to create memories or know what is possible. Sands maintains that parents must continue to be offered choice about what is done when their baby dies, and that in order for choice to be real, it must be informed. Parents have a fundamental right to see their own baby if they want to, and no health professional, however well meaning, has the right to deny them this choice.

References

NICE (2006) Postnatal care Clinical Guideline 37, NICE, London

NICE (2007) Antenatal and postnatal mental health Clinical guideline 45, NICE, London

NICE (2009) How NICE clinical guidelines are developed: an overview for stakeholders, the public and the NHS (Fourth edition) NICE , London