12 December 2017

Complaint about Rumer’s care, part 2

Covering letter (Appendix 1)

First of all, apologies to anyone who’s been waiting for us to get on with publishing our complaint as promised in October! We had some website issues to deal withthese are on track now and further updates should follow more quickly.

Below is the covering letter we sent with our (very long!) complaint about Rumer’s care (also included in the complaint document itself as Appendix 1).

While we had considered making a complaint at various points during Rumer’s lifeand, in fact, before she was bornwe had not done so. Mostly because things had improved, or we were keen to work with the clinicians who would be or were caring for Rumer and we didn’t feel that a complaint would further our goal of getting the best possible care for her.

After Rumer died, we had a number of unresolved concerns regarding her care. We had four meetings with various clinicians involved in her case: a PICUPICUPaediatric Intensive Care Unit consultant, a Neonatal consultant, a Paediatric Cardiologist and a Palliative Care consultant. These meetings did answer some of our queriesin fact we found most of them engaging and productivebut often they raised as many new questions as they answered. As we continued to have unresolved concerns, we began to consider making a formal complaint.

For us, the main purpose of the complaint was to finally get answers (I accept we were woefully naïve!) or at least to get a better picture of what actually happened. We also wanted those who had been on the other side of caring for Rumer, many of whom had seemingly found us so perplexing and/or unreasonable, to understand:

  • the wider situation outside their individual areas of practice
  • our perspective of what had happened
  • our grievances

In the early period after Rumer’s death we had high hopes that the hospital would wish to engage with us to improve both parties’ understanding and to work toward improving their handling of similar situations that would no doubt arise with other parents in the futureboth around the ethical issues surrounding trisomy 18 and more general themes such as communication and trust. Sadly, despite the generally positive early meetings and the sense from some staff that they too wanted this, it was not to be.

We were concerned we would not get the complaint in within the 12 months after finding out about the problem timeframe specified in the NHS Complaints Procedure, so we approached PALSPALSPatient Advice and Liaison Service. They contacted the Complaints department, who agreed we could have until December 2016 to put in our complaint: this is the generous timeframe mentioned in our letter.

We had approached Information Governance very soon after Rumer’s death in order to obtain copies of all documentation relating to her or to us. We received the documents bit by bit over a period of several months (obtaining the documents was a saga in itself) and in October 2016, as we were finalising the complaint in preparation for sending it a few days later, we received a large batch of selected emails with the promise of more to follow after redaction. We knew the outstanding documents may raise additional concerns when they arrived and wanted to be clear that, if so, we may add an addendum to the complaint at a future date. In the event we did so in March 2017.

By the time we wrote the complaint, we were feeling angry and frustrated: the hospital we thought had treated our daughter and us badly for a long time in our hour of need (despite some excellent parentprofessional working also), but subsequently largely got on board, with a desire to improve, now looked to be playing much more of a manipulation game that we had thought. The talk of collaboration had evaporated; the answers to our questions had become more guarded; opportunities to debate the ethical issues around trisomy 18 more widely had been shut down one by one; extreme reluctance had been shown in providing the documents containing Rumer’s and our personal data; and to cap it all, both the post-death review meetings and some of the documents we were finally seeing were alarming in terms of what they seemed to illustrate had been going on at the time.

This anger and frustration probably shows through in the complaint documents, parts of which seem somewhat petty and unreasonable even to us when we read them back now. Other parts, however, are as damning as ever and we would dearly love to understand how they came about andeven though it may be a pipe dreamto find some common ground and a positive way forward for ourselves, the professionals, the hospital trust, and indeed the NHS and country as a whole so that others in the future may not suffer such a difficult, fraught, damaging experience even when disagreements are so profound.

Concerns about the care of Rumer Gomez

Appendix 1: Covering letter with this document
Our address
Estelle LawlorPseudonym for CLHT Chief Executive no. 2
Chief Executive
Central London Hospital NHS Foundation TrustPseudonym for the hospital trust that provided most of Rumer’s treatment
Address
24th October 2016
Dear Ms. Lawlor,
RE: Rumer Gomez, DOB 24/9/15, Hospital no. redacted

We, Helen Roper & Chris Gomez, are writing to express our concerns about the care of our daughter Rumer at Central London HospitalPseudonym for the adult hospital that provided Helen’s maternity care and London Paediatric HospitalPseudonym for the children's hospital that provided most of Rumer’s care. We would like you to carry out a full investigation into our concerns and provide a response in accordance with the NHS Complaints ProcedureNHS Complaints ProcedureSee NHS Choices page for information about the procedure.

Helen became pregnant in January 2015 and accessed antenatal care at CLHCentral London Hospital. At the 20-week scan, it was identified that Rumer had diaphragmatic and cardiac anomalies, and subsequently, at 23 weeks gestation, Rumer was diagnosed with trisomy 18 (Edwards’ syndrome). We decided against a ‘palliative care only’ approach for Rumer, opting instead for active treatment as clinically appropriate. After a discussion with the Clinical Ethics Committee (CEC)Pseudonym for the trust’s ethics committee for examining issues that arose in clinical practice, the Neonatal UnitNeonatal UnitSee Who’s Who entry for details agreed to this approach.

Rumer was born at CLH on 24th September 2015 and transferred to the Neonatal Unit where she spent six weeks. She was discharged home with support from the Neonatal Community TeamPseudonym for the team that managed the transition from hospital to home for babies who were discharged from the Neonatal Unit. Five days later she stopped breathing at home and was taken by ambulance to A&EA&E (Thames Hospital)Accident & Emergency department at Thames HospitalPseudonym for the closest hospital to our home. After a few days there, she was transferred to Blyton WardPseudonym for the general paediatric ward at London Paediatric Hospital at London PaedsCasual name for London Paediatric Hospital for further investigations. She was discharged home after two weeks, on 26th November, but was re-admitted via CLH A&ECLH A&ESee Who’s Who entry for details later that night, having contracted Respiratory Syncytial Virus (RSV)RSVCommon winter virus that is serious for babies with existing compromises. See Public Health England guidance for details.. She spent another week in Blyton Ward’s HDUHigh Dependency UnitUnit providing an intermediate level of care between that of a normal ward and Intensive Care before deteriorating and being transferred to PICUPaediatric Intensive Care UnitIntensive Care Unit for childrensee Who’s Who entry for details of London PaedsPICU in early December. She died in PICU on 1st January 2016.

We have specific complaints about some departments’ management of Rumer’s care. There were also some general issues which recurred across many departments. Please see the attached document titled Concerns about the care of Rumer Gomez which details our concerns.

We are currently reviewing documents recently received from the Information GovernanceInformation GovernanceDepartment managing access to documentssee Who’s Who entry for details department and are awaiting further documents. We hope these will not raise any additional concerns. If they do, we may need to raise them at a future date. However, we wanted to submit this complaint now as we wished to comply with the generous timeframe set out by the Complaints teamComplaints teamDepartment for managing complaints about CLHTsee Who’s Who entry for details and to enable timely investigation of our concerns.

We would be grateful for communication to take place via email, copying us both in. Our email addresses are redacted and redacted.

We look forward to hearing from you.

Yours sincerely,
Chris Gomez
Helen Roper
Copies
Complaints Department
Address
Email address

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