PFD report

Sophie RYAN-PALMER and 3 others · Prevention of Future Deaths report

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Issued 25 Nov 2014•Inner North London

Report record

Published report and response evidence

This page connects the concerns raised in this report with statements found in recipients’ published responses. A link shows a clear evidence connection; it does not assign responsibility.

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Concerns
3

Raised in this report

Recipients
1

Named on the report

Responses found
1

Of 1 recipient

Stated actions
6

Described in responses

Recipients and published responses

Source document

Full report text

This is the full text from the original published report.

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Concerns and recipient responses

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Report evidence summary

Concerns raised3

  1. Lack of disease-specific national benchmarking for autologous stem cell engraftment recovery
  2. Failure to make relevant international SIOPEN trial results publicly available
  3. Lack of an appropriate national control risk group with a national lead for autologous stem cell transplant governance
Responses linked to these concerns

Each statement is shown once, even when linked to more than one concern.

Actions described in response An action is something a recipient says it has done, is doing, or plans to do in response to a concern raised.2

  1. Action

    Establish a national oncology expert group to review research and cases and inform transplant indications, protocols, audit and benchmarking.

    Stated by NHS EnglandStated in progressThe respondent said that this action was in progress when they made their response on 25 November 2014.
  2. Action

    Enhance expert-group reporting to the BSBMT registry to strengthen benchmarking and support NHS England’s Quality Dashboard.

    Stated by NHS EnglandStated plannedThe respondent said that this action was planned when they made their response on 25 November 2014.

Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

PFD Monitor interpretation

Lack of disease-specific national benchmarking for autologous stem cell engraftment recovery

Wider context from the report

“1. I heard at inquest that there is concern within the medical community over the whole governance structure for autologous stem cell transplant in this country, most especially regarding the lack of any one appropriate control risk group with a national lead. 2. I also heard that there is at present no disease specific national benchmarking available for autologous stem cell engraftment. The relevant results of an international SIOPEN trial (that aspect of which closed in 2011) have not been made publicly available. Those treating children following autologous bone marrow transplant, do not know how many days to recovery is normal, so they do not know what is abnormal, and whether the results in their own hospital fall below the results elsewhere. The failure to unlock the results of the SIOPEN trial could, therefore, compromise the optimal care of some children with cancer. ”

Is this part of a recurring concern?

No recurring-concern membership is currently published.

Open source report

Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

PFD Monitor interpretation

Failure to make relevant international SIOPEN trial results publicly available

Wider context from the report

“1. I heard at inquest that there is concern within the medical community over the whole governance structure for autologous stem cell transplant in this country, most especially regarding the lack of any one appropriate control risk group with a national lead. 2. I also heard that there is at present no disease specific national benchmarking available for autologous stem cell engraftment. The relevant results of an international SIOPEN trial (that aspect of which closed in 2011) have not been made publicly available. Those treating children following autologous bone marrow transplant, do not know how many days to recovery is normal, so they do not know what is abnormal, and whether the results in their own hospital fall below the results elsewhere. The failure to unlock the results of the SIOPEN trial could, therefore, compromise the optimal care of some children with cancer. ”

Is this part of a recurring concern?

No recurring-concern membership is currently published.

Open source report

Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

PFD Monitor interpretation

Lack of an appropriate national control risk group with a national lead for autologous stem cell transplant governance

Wider context from the report

“1. I heard at inquest that there is concern within the medical community over the whole governance structure for autologous stem cell transplant in this country, most especially regarding the lack of any one appropriate control risk group with a national lead. 2. I also heard that there is at present no disease specific national benchmarking available for autologous stem cell engraftment. The relevant results of an international SIOPEN trial (that aspect of which closed in 2011) have not been made publicly available. Those treating children following autologous bone marrow transplant, do not know how many days to recovery is normal, so they do not know what is abnormal, and whether the results in their own hospital fall below the results elsewhere. The failure to unlock the results of the SIOPEN trial could, therefore, compromise the optimal care of some children with cancer. ”

Is this part of a recurring concern?

No recurring-concern membership is currently published.

Open source report

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Establish a national oncology expert group to review research and cases and inform transplant indications, protocols, audit and benchmarking.

Verbatim wording from the response

“3. Establishment of a new national expert group: NHS England has agreed with the Paediatric Cancer Clinical Reference Group (CRG) and JACIE to establish a national oncology group of experts systematically reviewing research and cases to inform indications, protocols and benchmarking. We consider that this will enhance governance and reduce the risk of future deaths occurring. The Paediatric Cancer CRG is leading the establishment of this group, with the first meeting being planned for February 2015. This group will report on a review of the indications for autologous transplants for solid tumours and advise on any changes required to the clinical commissioning policy. The group will also review individual cases and act as the forum for audit and benchmarking.”

Source location

2014-0520-Response-by-NHS-England
Page 3 · response
Published 25 November 2014

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Enhance expert-group reporting to the BSBMT registry to strengthen benchmarking and support NHS England’s Quality Dashboard.

Verbatim wording from the response

“4. Improved reporting: This expert oncology group will enhance the current reporting into the BSBMT registry to enhance the benchmarking through this route. This will in turn support the ongoing development and refinement of the NHS England Quality Dashboard, which we use as a key tool to compare outcomes and identify good practice.”

Source location

2014-0520-Response-by-NHS-England
Page 3 · response
Published 25 November 2014

Open published response

Other statements in published responses

These actions and other statements could not be clearly connected to one concern in this report.

Recipient-stated actions An action is something a recipient says it has done, is doing, or plans to do in response to a concern raised.4

  1. 1

    Review and amend children’s bone marrow transplant service specifications to clarify and reinforce compliance requirements.

    Stated by NHS EnglandStated plannedThe respondent said that this action was planned when they made their response on 25 November 2014.
  2. 2

    Issue a Specialised Services Circular restating commissioning and provider requirements for paediatric transplants.

    Stated by NHS EnglandStated plannedThe respondent said that this action was planned when they made their response on 25 November 2014.
  3. 3

    Implement changed procedures and protocols following the cryopreservation serious-incident investigation.

    Stated by NHS EnglandStated completedThe respondent said that this action was complete when they made their response on 25 November 2014.
  4. 4

    Commission the internal quality surveillance team to support and assure implementation of governance changes.

    Stated by NHS EnglandStated plannedThe respondent said that this action was planned when they made their response on 25 November 2014.

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Review and amend children’s bone marrow transplant service specifications to clarify and reinforce compliance requirements.

Verbatim wording from the response

“2. Review of service specifications: NHS England will also be reviewing the service specifications relating to bone marrow transplants for children and making any changes in wording required to clarify and reinforce this requirement.”

Source location

2014-0520-Response-by-NHS-England
Page 3 · response
Published 25 November 2014

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Issue a Specialised Services Circular restating commissioning and provider requirements for paediatric transplants.

Verbatim wording from the response

“The deaths of these children were reported by GOS through the national incident reporting system in the NHS as a serious incident (an SI). In response, NHS England’s London Regional Team worked with the Trust to review the cryopreservation serious incident. The investigation and action plan have provided assurance that procedures and protocols have changed as a result. The key points of learning from the incident have already been shared with other paediatric transplant providers by the British Society for Blood and Marrow Transplantation (BSBMT), and we will in February be issuing an NHS England Specialised Services Circular to all teams involved in commissioning specialised services to highlight the concerns raised and the actions being taken nationally, and required of Regional teams, to respond to your recommendations”

Source location

2014-0520-Response-by-NHS-England
Page 2 · response
Published 25 November 2014

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Implement changed procedures and protocols following the cryopreservation serious-incident investigation.

Verbatim wording from the response

“The deaths of these children were reported by GOS through the national incident reporting system in the NHS as a serious incident (an SI). In response, NHS England’s London Regional Team worked with the Trust to review the cryopreservation serious incident. The investigation and action plan have provided assurance that procedures and protocols have changed as a result. The key points of learning from the incident have already been shared with other paediatric transplant providers by the British Society for Blood and Marrow Transplantation (BSBMT), and we will in February be issuing an NHS England Specialised Services Circular to all teams involved in commissioning specialised services to highlight the concerns raised and the actions being taken nationally, and required of Regional teams, to respond to your recommendations”

Source location

2014-0520-Response-by-NHS-England
Page 2 · response
Published 25 November 2014

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Commission the internal quality surveillance team to support and assure implementation of governance changes.

Verbatim wording from the response

“5. Assurance: NHS England will commission its internal quality surveillance team to support and assure changes in governance are implemented.”

Source location

2014-0520-Response-by-NHS-England
Page 3 · response
Published 25 November 2014

Open published response
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Information checked against the published report and official responses · Data reviewed 7 Sep 2026 · About data quality and limitations

Official responses located
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Data last updated 7 September 2026