Report of the Infant Cremation Commission

Annex M - Health Board Documentation Responses Summary

Health Board Documentation Responses Summary - December 2013

Overall Notes

1. The variation in the volume of submitted material (a total of 237 separate documents) was the most immediately apparent aspect, with no correlation between the volume of documents and health board geographic size, number of institutions or population density. The request was for documents related to disposal, but this was interpreted differently by each health board. This means that identifying 'gaps' should be undertaken with caution: gaps will only relate to what was submitted, not necessarily to what health boards actually have available to them or are using.

2. Every health board's approach and documents used were also very different in format, length and in local procedures, therefore comparisons are tricky. But in terms of readability to a layperson, Ayrshire and Arran and Forth Valley documentation looked good both in terms of their internal and their public facing documents. Western Isles internal checklists were also very clearly and usefully set out.

3. There is clearly a plethora of charity organisation leaflets available, most predominantly from SANDS. Nearly all of these charity leaflets appear to have taken a 'there may or may not be ashes' approach to the question of what is available after cremation.

4. Health Board information, whether in their own leaflets and brochures to parents, or in internal policy documents for staff, is a little more confused. The changeover to collective cremation for pre-24 week pregnancy losses (whether miscarriage or termination) has obviously had an impact on document wording but the vast majority of health boards have elected not to reference why ashes are not available after this (because the ashes are collective, not individual). The error in the Annex of the 2012 CMO and CNO Guidance on the Disposal of Pregnancy Loss, where it suggests there will be no ashes 'due to the absence of formed bone' may be exacerbating this issue.

5. However, additional confusion is caused when health board documents make no distinction, or unclear distinction, between the above pre-24 week collective cremation arrangements and eg a parent-requested individual cremation of a pre-24 week pregnancy loss, or a cremation of a stillbirth or neo-natal death.

6. In these instances, it would be more correct to say that there 'may not' be ashes, but several, if not most health boards, retain the 'there will be no ashes' wording. Some health boards do not say anything at all about ashes, even in documents where it would seem logical that they should or could, although this is very much a subjective and layperson judgement. In general, health boards either did not say anything in documents about availability of ashes, or they said they would not be available.

Notes By Health Board

Ayrshire and Arran
Documentation submitted has a logical flow to it. Notable that nearly all documents include space for patient signature, making most of it 'public facing'. Some forms are prefaced with a neat checklist for staff. Documents tend to include statement eg 'cremation options have been explained to me' or similar, with the more detailed information on what this contained within their own NHS info leaflet.

Borders
Information was not particularly standardised in appearance, but notable how much of the relevant material required a patient / parent signature. Miscarriage Association leaflet notes hospital use of clinical waste / incineration, which is no longer the case in Scotland but may be in rest of UK.

Dumfries and Galloway
Most of the paperwork submitted was internal medical management forms that did not address disposal issues. Although these forms were all very similar, one of them did include burial / cremation info on the back. It was not apparent why only one would have this info, although it could be a more recently updated form.

Fife
One of the seven documents submitted was a one page flowchart for procedures in the event of pre-24 week pregnancy loss. Perhaps of interest is that it seems to suggest that general support and information about disposal is not provided in the event of a termination. Possibly an out of date document.

Forth Valley
Included in the public facing docs were several title pages only of different charity leaflets, hence text could not be checked for relevance to disposal issues. Forth Valley forms and checklists are clearly titled, numbered and aligned with each other. They also have useful 'bereavement checklist' internal documents for differing situations, which are circa 9 pages in length and look as if they would be very useful to staff.

Grampian
Submitted by far the most documentation (57), much of which looked as if it had been taken from a core guidance document. These documents appear to have included all their clinical protocols as well, which do no not relate to disposal and which took some time to sift out from the others. Sifting out these documents was not always easy and it was also occasionally unclear whether documents submitted were all currently in use or not. For example, one or two of the most recent, related to pre-24 week 2012 guidance were marked as 'draft'. Whether new documents like this would eventually replace or lead to revisions to earlier documents is unclear. Seven of the ten documents were related to new pre-24 week arrangements, with 2 for post-mortem arrangements and one specific to termination.

Greater Glasgow & Clyde
Glasgow submitted 1 charity brochure (Miscarriage Association) and an NHS leaflet on termination re attending the assessment clinic. Neither included any information on funeral arrangements. Along with this were 7 sets of obstetric guidelines specific to clinical procedures. They also submitted an 'NHS GG&C Policy on the Handling and Disposal of Fetal Tissue (up to 24 weeks gestation) which sets out eg authorisation forms that should be used for sensitive collective cremation (although none of these were submitted). It is brief, official and makes no mention of discussion with parents / patients.

Highland
Information submitted was all from NHS Highland's pathology dept(s). Additional text stated that they also use charity brochures, mainly from SANDS, although they did not include these with paperwork submitted. Same wording re consent for cremation is applied to all forms with signature of parent required. A flow chart suggests that the same forms and wording are used for elective terminations, in which case use of the term 'parent' when signing forms may not always be ideal. No information on availability of ashes is included in documents' wording, but this is possibly correct in the context of the type of forms.

Lanarkshire
Lanarkshire information was concise and clear, but although requested in October 2013 it had evidently not been fully updated in the light of CMO guidance in 2012, as it still referred to incineration of early fetuses. Also, as with Glasgow, there is mention of forms to be filled in for cremation but these were not submitted.

Lothian
The information submitted by Lothian was extensive, but little of it was relevant to disposal / ashes issues. The documentation submitted in October was identical to that submitted in May, even though since then the health board has revised its procedures to accommodate the CMO 2012 guidance on cremation of pre-24 week fetuses. The public facing stillbirth booklet continues to state that there will be no ashes from a cremation at Mortonhall, and the pre-24 week booklet continues to make no reference at all to availability or otherwise of ashes. On the surface, NHS Lothian documentation appears to be robust, comprehensive and aligned, but its focus is very definitely (and arguably quite correctly) on internal and clinical protocols and procedures. The information on funeral options etc came across - to this layperson anyway - as a little confusing / confused. It is possible, however, that the health board is awaiting outcomes from the Mortonhall Investigation and/or the Commission before making substantive changes.

Orkney
Orkney utilises NHS Grampian/Highland services

Shetland
Shetland utilises NHS Grampian/Highland services.

Tayside
Only two documents submitted. It is possible Tayside has only sent through disposal related info for pre-24 week. Their internal procedural document is very clinical and official eg no signposting to support services or similar. Possibly dealt with via other procedures but as nothing else submitted it's difficult to say. We know from other routes that Tayside delivers a good standard of service in this regard, so it may be advisable to double check this.

Western Isles
Submitted scanned title pages only of 11 different charity leaflets, mainly SANDS leaflets, so not possible to check wording of these. Their checklist document for pre-24 week and for stillbirth/neonatal death was admirably concise and clear, from a layperson perspective and - unlike other areas - used appendices to include most of the forms they require to have filled in as well.

Quotes relating to Ashes in Health Board documentation