7. Communication with the Families
At the heart of this report lies our responsibility to the children and young people who experienced the GNE infections included in our review, and to their families. Throughout the Review we have tried to address the ToR with which we were charged as fully and accurately as we have been able, with the information provided to us. We have also recognised our responsibility to keep families informed about the Review and its progress. In order to do so, the following principles were adopted:
1. Clarity about the purpose of, and eligibility for the Review – this was addressed by an initial communication sent on 4th March 2020 to all families from Professor Fiona McQueen, CNO, and Professor Marion Bain, Director of IPC NHS GGC and Senior Medical Consultant, NHS National Services Scotland (now Deputy Chief Medical Officer), setting out the criteria for inclusion in the review and its ToR.
2. A commitment to regular progress reporting – this has been undertaken in collaboration with Professor Craig White (Communications and Engagement Lead, Scottish Government) and Professor John Cuddihy (Patient and Family Representative for the Case Note Review and the QEUH/NHS GGC Oversight Board) with whom meetings have been held regularly (as shown in Appendix A) during the review process, and through whom we provided written updates to the families in July, October and December 2020.
3. The opportunity for families to submit written comments to us in relation to their own child was made clear at the outset and was reiterated in subsequent progress updates; a summary of the responses we received is shared in section 7.2.
In line with our ToR, we have given an undertaking that, in addition to this overview report, we will provide an individualised report for each patient/family describing our assessment of the infection episode(s) experienced. Our plans for doing this are set out in section 7.3.
In our previous communications with families, we have made two important points. First, given that we have had to make judgements on retrospectively acquired data, we have used the principle of the ‘balance of probability’ in reaching our conclusions. This means that, based on the evidence available to us, our conclusion about an event is more likely to apply than not. Second, that our report will not include the case details of individual patients in a way that would readily allow them to be identified by others.
7.2 Information received from families about the Case Note review
All information and updates to and from families has so far been coordinated through NHS GGC. Communications from families were received by NHS GGC in the first instance, and then passed on to us via Professor Craig White for consideration in the Review.
Of the 86 patients initially identified as eligible for inclusion in our review, NHS GGC received communication from one family requesting that their child be excluded: we undertook no consideration of the clinical circumstances of this case.
A further 9 written communications were passed on to us for consideration. One raised specific concerns relating to nursing care which was considered out of scope but we will acknowledge and explain this in the individual report to that family; 1 requested a copy of their child’s medical notes from NHS GGC and a copy of any reports about their child; (this is outwith our remit); and 7 included specific concerns relating to their child’s infection.
The main themes addressed by these 7 communications can be summarised as follows (note that some families raised several points and the number of families addressing each theme is given in brackets):
- lack of clear communication about the nature of the infection(s) (6)
- questions raised about medication prescribed for and/or to prevent infection(s) (3)
- describing the impact the infection had had on their child/themselves, including delay in treatment (3)
- concern about the length of time before the central venous line was removed (1)
- concern about the timing and interpretation of microbiological typing results from the reference laboratory (1)
We intend to respond to these points as fully as we can in our individual written reports to the families concerned.
7.3 Individual Reporting to Families
After the publication of this report, we will prepare individual written reports for each of the infection episodes included in our review for every patient. These will summarise our findings in line with the framework to which we worked during the review process (section 3.6).
We view these as private reports from the Panel to the patient and family concerned. The Review Team will therefore take responsibility for distributing the reports having first worked with NHS GGC to ascertain up to date contact details and communication preferences for the patients and families concerned, and to confirm the updated status of all patients.
The process by which this will be effected has been the subject of discussions between ourselves, representatives of NHS GGC, Professor White and Professor Cuddihy. It is agreed that families will receive written information about the process approximately 4 weeks before the reports are distributed. This will explain the timescale and offer the opportunity for patients and families to meet with members of the Panel after receiving their report, if they wish to do so. They will also receive information about the support available to them should they find the details of the report distressing or if it raises other concerns about their treatment experience and its consequences. We will ensure that those families who have been bereaved by the death of their child will be able to access appropriate support.
Whilst we believe that the individual report should be ‘owned’ by the patient/family, we also believe it is appropriate, subject to the consent of the patient/family, that a copy of the report is made available to the clinical team who was, or may still be responsible for the care of each patient. The opportunity to share the report with the relevant clinical team will be set out in the advance letter to the families.
When we send families their reports, we will also send an information sheet and consent form requesting consent to share the report with the relevant clinical team. Families will then be able to contact the Review Team to make an appointment for a meeting with the Panel should they wish to do so.
To further facilitate direct contact with the Review Team, a specific electronic mailbox has been set up and will be in operation prior to the distribution of individual patient reports. It will be manned until the process is complete. A contact telephone number will also be provided for families to use if preferred.
A written summary of the meeting held with a family will not be prepared but families will be able to bring an additional person with them to the meeting to act as a supporter who may, if wished, also keep notes for the family during the discussion. Any agreed action points that emerge from the discussion will however be documented and shared in writing with the family after the meeting. This will include an indication of how and by when it is hoped these can be addressed.
We will treat the proceedings of the meetings as confidential and we will not share the content of the discussion with any other person or organisation unless specifically requested and agreed by the family.
At the completion of the process, the dates of all meetings held with families will be notified to the Oversight Board, NHS GGC and Scottish Government. This will indicate that the Case Note Review is complete.
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