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Report of the Infant Cremation Commission

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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

Ayrshire & Arran

NHS Info Leaflet

"It is important that you know that there will no ashes to scatter" This quote is in relation to hospital arranged cremation. There is no mention of ashes in the sections on privately arranged cremation.

Borders

Anon (poss health board) - extract Note on Cremated Remains

"…NVF baby, there is a strong possibility that there may be no cremated remains available after the cremation has taken place. This is because the cartilaginous (bone) is not fully formed and may be entirely cremated during the process" This leaflet also contains a statement for patient signature that a) the patient is aware of this or b) the staff member has informed the patient of this.

Borders General Hospital authorisation forms

"It is not possible to attend the crematorium for the cremation itself and there are no cremated remains (ashes) afterwards."

Miscarriage Association 'management of miscarriage: your options"

"…many hospitals have sensitive disposal policies and your baby may be buried or cremated, perhaps along with the remains of other miscarried babies. Other hospitals treat the remains of an early loss as clinical waste, which is sent for incineration." Note: this statement is now incorrect in Scotland.

Dumfries and Galloway

NHS leaflet re termination 'unplanned pregnancy'

"Unless you wish to make your own arrangements, we will arrange cremation at the local crematorium Roucan Loch…. You would not be able to attend the cremation and there are no cremated remains (ashes) from this process that can be made available to you"

NHS leaflet re miscarriage 'what is a miscarriage?'

same wording as in termination leaflet.

Fife

NHS Fife Leaflet 'Arrangements following the loss of your pregnancy'

"Unfortunately due to the nature of cremation there are no individual ashes which can be returned to families"

Forth Valley

NHS Internal doc Checklist for funeral arrangement for cremation of a stillborn baby

"Explain to parents the crematorium staff will endeavour to get a small amount of cremated remains but cannot guarantee this. Please ensure that the Funeral Directors know of the request BEFORE the Cremation" This note is printed on the front cover page of the checklist. There is similar type of message on the NVF cremation checklist which advises that "parents should be informed that there will be no ashes"

NHS Forth Valley 'Creating Memories' (internal)

"For some parents, it may be important for religious reasons that the body of their baby is not cremated. This applies to incineration as well as cremation." Use of the term 'incineration' is presumably just an oversight in their paperwork.

SANDS (Forth Valley) 'Organising Your Baby's Funeral'

"Sadly, ashes are not always guaranteed following a baby's cremation. However, if you do receive ashes, they can be etc etc…"

NHS FV 'Sensitive Disposal Following Miscarriage'

Explains the collective process in brief then advises 'There will be no cremated remains (ashes) from this process".

NHS FV ' Senstive Disposal Following Termination of Pregnancy'

Explains briefly that tissue will be cremated unless woman wants to make her own arrangements. No mention of ashes. This is the only document seen that adds 'Occasionally, if the pregnancy has been very early, there are no further remains for cremation".

NHS Forth Valley 'The Loss of Your Baby'

"Whilst the crematorium staff will endeavour to collect a small amount of ashes, sadly this cannot be guaranteed"

Grampian

ARC (charity) brochure 'A handbook to be given to parents…'

"you may want to ask the funeral director if there will be individual ashes for you to have"

NHS Gynaecology Services info leaflet for patients

no mention of ashes

Miscarriage Association 'Late Miscarriage'

"some hospitals offer collective burial or cremation where a number of babies are buried or cremated together" no mention of ashes

Miscarriage Association 'Your feelings after miscarriage'

"…most hospitals offer a simple funeral, with burial or cremation" no mention of ashes

Sands 'Mainly for fathers'

no mention of ashes

Greater Glasgow & Clyde

n/a

Highland

n/a

Lanarkshire

Wishaw General Hospital Womens Services Directorate: Med Termination of Pregnancy for women over 9 weeks - 20 weeks gestation

"Women should be informed that the fetus will be cremated by the hospital, and asked to sign a consent form and an application for cremation form to allow this to happen. Women can be given more information if they request this."

As above but: Medical termination of pregnancy for women up to 63 days gestation

"Fetus and Placental tissue/POC is placed in a Placenta disposal bin, sealed and labelled and sent for incineration using an Internal Waste Transfer note. Respect should be given to any specific requests by the woman with regard to the disposal of their fetal remains."

NHS Lanarkshire Wishaw General Hopsital 'Support on the Loss of Your Baby over 24 weeks / under 24 weeks

Both documents contain the same wording "You might like to place your baby in the hands of your own undertaker who will arrange a private cremation or burial. If you wish, Wishaw General Hospital can arrange for your baby to have a cremation or burial and, as with the private arrangements, you can be totally involved. No mention of ashes retrieval.

Lothian

NHS Lothian stillbirth booklet 2012

"There will be no retrievable cremated remains of your baby available following cremation at Mortonhall Crematorium. Should you wish to obtain cremated remains of your baby you are advised to make private funeral arrangements." This is under Option B, which is for cremation with ceremony (Option A is cremation without ceremony). As a stillbirth, this must be for individual cremation, not collective, and the document is specifically dated 2012 after Mortonhall changed its practice, so information may not have been updated properly?

NHS Lothian pre-24 week loss booklet 2012

no mention of ashes

Orkney

n/a

Shetland

n/a

Tayside

NHS Tayside 'Arrangements following the loss of your pregnancy'

Your pregnancy loss/baby will be placed in a small individual container and will then be taken to Perth Crematorium. Although your pregnancy loss is in its own container, a number of losses are transported and cremated together. Please be assured that each loss is handled with respect and dignity through the whole process" + "Although there are no ashes available to scatter, there is a Children's Garden of Remembrance..."

NHS Tayside 'Clinical Disposal of Fetal remains of Less Than 24 Weeks

No mention of availability or otherwise of ashes at all. Very clinical / procedural document.

Western Isles

NHS Western Isles 'Checklist for Stillbirth or Neonatal death' Appendix 5b

Parent is asked to sign against the following statement: " I/WE UNDERSTAND THAT THERE MAY BE NO IDENTIFIABLE REMAINS RESULTING FROM THE CREMATION. HOWEVER, IF THERE ARE REMAINS, THEY WILL BE DISPATCHED BY POST TO THE APPLICANT/FUNERAL DIRECTOR"

NHS Western Isles 'Checklist for Pregnancy Loss First Trimester < 14 weeks

same wording as above

NHS Western Isles 'Checklist for Pregnancy Loss 14 - 24 weeks'

same wording as above