Report of the Infant Cremation Commission

Section 4 - Submissions

Context and Background

4.1 One of the first acts of the Commission was to issue a public call for written submissions on 22 May 2013, following its first meeting the day before.

4.2 As well as seeking input from professional groups and individuals, the Commission's view was that, if it was to make recommendations for the future, it had to understand what may have gone either right or wrong for parents and families, under previous or current policies, practices and legislation. This was a difficult but necessary request to make of those most affected. Initially, there was understandable reluctance on the part of some to engage with the Commission.

4.3 The original request was for written submissions by 19 July 2013. However, a meeting between parents and Lord Bonomy and a subsequent meeting between parents and the Commission Secretariat established that, given more time and wider circulation, for example via bereavement support and other charity networks, more parents would be likely to respond. The date for responses was therefore extended to 2 August 2013.

4.4 As has already been noted, the Commission ultimately received a total of 57 written submissions which fell into four fairly well-defined categories.

• By far the largest category, of 27, was those individuals who had themselves lost a child, many of whom had subsequently experienced further distress as a result of the information they had received and/or some aspect of the funeral arrangements.

• A further 13 submissions were received from organisations such as the NHS, local authorities, Cremation Authorities, charities and parents' groups.

• Each of the organisations represented on the Commission also made a submission.

• Seven additional individual submissions were received from persons whose work brought them into contact with cremation, but who were presenting their own views rather than those of their employer organisations.

Key Points from Submissions

4.5 Whilst the topics raised and the views expressed varied across these different groups, the point on which there was striking consensus was that parents should receive as "ashes" whatever remains in the cremator after the cremation process, regardless of its composition, if they so wish.

4.6 Expressed in different ways across many submissions was the clear consensus that, whatever changes may be required or would be recommended, these should be framed in a person-centred way that has the necessary flexibility to allow for the individual choices, situations and feelings of those involved.

4.7 Another main area highlighted across all the categories was the need for better communication among Funeral Directors, healthcare staff and crematoria staff and also between each of their organisations and those who have been bereaved.

4.8 Underpinning this second point on communication was the desire for more consistent national guidance, policies and - in particular - practices across the country, delivered through effective training and designed to ensure that those who had been bereaved receive accurate information delivered in a sensitive and supportive manner.

Submissions from Parents

4.9 The submissions received from parents were deeply personal and often highly emotive. Many had been profoundly affected by the triple distress of suffering the death of their child, followed by difficulties with the funeral arrangements, then exacerbated by new, conflicting or contradictory information as to what happened to their child's ashes.

4.10 The clearest and most frequently recurring point made in these submissions was that parents should be able to receive any and all ashes remaining after cremation if that was what they wished. Parents were very clear that it did not matter if the ash was, for example, predominantly coffin ash; they wanted any and all remains to be offered to them or any other parent in a similar situation.

4.11 From the experiences recounted, it was also clear that there was variation in the information about the availability or otherwise of ashes that was given to bereaved parents across the country, and the manner in which this was conveyed (or not) to them. Approximately half of these submissions directly attributed responsibility for their distress to one or more of the three main staff groups involved: health care staff; funeral director staff and crematoria staff. Whilst it was not possible to ascertain whether this attribution was always correct, ie any one staff group may simply have passed on information to a parent gained from one of the other two staff groups, this in itself suggested that there were flaws in the chain of communication between these groups and what they each then communicated to parents.

4.12 A further matter of note was the time-frame encompassed by the submissions from parents. Dates were mentioned in 25 of the 27 submissions from parents, ranging from the mid-1970s to 2012. The first point to note is that the majority dated from the 1980s and 1990s, with only three cases dating from within the last five years, and one of those expressing a neutral rather than a negative view of their experience. The second point to note is that, while these submissions suggested practice had varied by date as well as by area, they did not indicate whether practice had improved with the passage of time. So whilst the span of time involved across all these submissions may explain some variations in the nature of the support and information provided to parents, and the availability of ashes, it does not explain all of these.

4.13 In suggesting improvements for the future, these submissions tended to focus on the need for compassionate, person-centred approaches when professionals are working with individuals who have suffered the loss of a child.

4.14 Some additionally expressed the view that, whilst parents should be actively involved in decision-making, this had to be conducted in a way that recognised how difficult it can be to make considered decisions based on information given at a time of extreme distress. A suggestion was that it may be beneficial for arrangements to be discussed on more than one occasion with parents, in order to better ensure that they fully understand the choices available to them. Signposting to support services should also be considered an essential part of any discussions with bereaved parents.

4.15 Other suggestions included standardised industry guidance, more detailed and thorough inspections of crematoria and tighter enforcement of standards.

Submissions from Organisations

4.16 Thirteen submissions were received from across a range of organisations involved in the process of infant cremation including the NHS, local authorities, crematoria, crematoria and cemetery professional bodies, charities, bereavement support services, Funeral Directors and groups representing affected parents.

4.17 Several of these submissions strongly recommended there should be a clear definition of ashes, because of the current different interpretations of 'ashes' and 'cremated remains' in eg the Guidance issued by the ICCM and FBCA respectively.

4.18 A recurring suggestion was that national guidance, or a single code of practice, should be developed which would define clearly a consistent process for cremating infants, regardless of the circumstances of their death.

4.19 This could, for example, include the cremation or burial advice and support that would be offered to those who had suffered the loss of a child through cot death, which has to be investigated via the Crown Office Procurator Fiscal Service.

4.20 Such national guidance should address complying with environmental and public health obligations whilst at the same time maximising the prospect of recovering ashes.

4.21 This national guidance or code of practice might principally involve funeral director and crematoria representative bodies, but could additionally encompass NHS bereavement support services.

4.22 Staff training within and across the different sectors, communication between organisations and with parents and standardised forms and documentation within or across the different sectors were also identified as areas for improvement. These measures, it was suggested, would also better ensure that clear and consistent advice, support and information could be given to parents in the future.

Submissions from Commission Members

4.23 Each Commission Member made a submission, either on behalf of their organisation or in respect of their role within that organisation. The content of these submissions reflected their understanding of the current system and the areas that they believed required improvement. They also demonstrated a general willingness to effect any necessary changes in the light of Commission findings, which accorded with views expressed at Commission meetings.

4.24 Submissions identified key areas for improvement as: communication (both amongst agencies and with the bereaved); training of all staff involved across the NHS, funeral industry, bereavement support services and Cremation Authorities; and clear and consistent terminology, messages and guidance.

4.25 Submissions made clear that the collaboration of all partners was critical to the improvement of the system and to the implementation of any recommendations. Achieving continuity in training a large volume of staff across a number of different sectors, however, was highlighted as a challenge.

4.26 A proposal made was for a national framework to be agreed that might ensure any new policy would be implemented consistently across Scotland, including clearly defined roles for the different professionals involved in the process.

Submissions from Other Individuals

4.27 Submissions in this category came from individuals who were, or had been, linked in a professional capacity to infant bereavement. This encompassed the NHS, funeral industry, bereavement support services and professional bodies representing Cremation Authorities.

4.28 The points and recommendations set out in these submissions did not tend to overlap, although they did clearly suggest a general lack of consistency as the biggest issue within the current system. This included lack of consistency in practice across the years; in terminology; in the verbal information given to parents and in the paperwork that was required to be completed by the various parties involved.

4.29 One recurring suggestion was to ensure that parents were talking through options face to face with a recognised expert in bereavement, who might be either a member of healthcare staff or Funeral Director staff.

Role of Submissions

4.30 The views and suggestions raised by all those who made these submissions have played a central role in the Commission's determination of issues to be explored, the ensuing deliberations on these issues, and in the formulation of the recommendations that have emerged, all of which is set out in the following Sections of the Report.