16 February 2018

Complaint about Rumer’s care, part 4

Pregnancy 1 & Appendices 36

Concerns about the care of Rumer Gomez

Pregnancy 1: Delays in care-planning


1.Delays in care-planning

This was a common theme throughout the antenatal period, in which we found significant difficulties in accessing some specialisms, notably NeonatologyNeonatologySee Neonatal Unit Who’s Who entry. Additionally, some professionals were keen to delay care-planning discussions until later in the pregnancy, despite this being against our clearly expressed wishes and having a potentially negative impact on Rumer’s care.

  1. It was important to us to have a proposed care plan in place relatively early, because of the high risk of prematurity associated with trisomy 18; we needed an agreed care plan in place before Rumer was born. In addition, we knew that parents who opted for active treatment often met with opposition and we needed time to negotiate with CLHAbbreviation for Central London Hospital, the pseudonym for the adult hospital that provided Helen’s maternity care/London PaedsAbbreviation for London Paediatric Hospital, the pseudonym for the children’s hospital that provided the vast majority of Rumer’s care, and if this was unsuccessful, to explore our options elsewhere. However, there was an unwillingness to commit to any care plan. In the end, even agreement about principles of neonatal care was only reached after 33 weeks gestation, which left us with very limited time. Physicians wanted to delay discussions until late pregnancy due to the risk of stillbirth. Dr George DonnachiePseudonym for the Fetal Medicine & Obstetric consultant stated in his email of 3rd July 2015 (Appendix 3, page A‑13) that a planned multi-disciplinary meeting should be delayed until 34 weeks gestation. Other clinicians concurred that discussion of neonatal care should be delayed until this time.
  2. Accessing the Neonatal team in order to discuss care options was challenging. We requested an appointment with them shortly after diagnosis (see Appendix 4, page A‑14). While this was less urgent than some of the other appointments requested, it was one of the most important meetings. After three weeks, we contacted the FMUFetal Medicine UnitWho’s Who entry midwife team to enquire about what was happening. We left two messages on the voicemail but received no reply. Eventually, we were contacted by FMU midwife Elysia CrouchPseudonym for the midwife who served as our link to the Fetal Medicine Unit about another matter and requested that the neonatal appointment was arranged. We were then offered an appointment with the Paediatric Palliative Care teamPaediatric Palliative Care TeamWho’s Who entry. After we stressed the importance of the neonatal appointment, we were offered an appointment on the same day.
  3. After meeting the Neonatal team, the consultant we saw (Dr Ida LeighPseudonym for the Neonatologist who initially served as Rumer’s named consultant) said that she would arrange a second appointment in order to progress our discussion. She refused to give contact details for herself or the Neonatal department, saying that we should instead contact them via Palliative Care. When we did not hear from her, we attempted to chase up the appointment both through Palliative Care and via other departments. She then contacted us to arrange the appointment.
  4. When we attended the second Neonatal appointment on 21st July 2015, Dr Leigh informed us that she had not yet spoken to all of her fellow consultants, and they did not yet have a consensus and therefore she could not describe the care that the unit would or wouldn’t feel able to offer to Rumer. We have since discovered that in fact the Neonatal consultant team had met on 14th July and agreed a detailed provisional care plan (see Appendix 5, page A‑15). We would have been in strong opposition to this care plan, but were never told about it and therefore did not have the opportunity to discuss or challenge it in any way, or to seek alternative options if needed.
  5. On 29th July, a provisional obstetric/midwifery care plan was also devised and circulated by Consultant Midwife Khushi HollowayPseudonym for the Consultant Midwife who oversaw the midwifery aspects of Helen’s care (Appendix 6, page A‑17). This too was against our clearly-expressed wishes, and again we were never informed of it or given the opportunity to discuss or challenge it.

    See Overall point 2.d)i2.d)i below, page 64, for details.

  6. During the 21st July Neonatal appointment, it was agreed that second opinions would be arranged from The Simms HospitalPseudonym for one of the hospitals from which a second opinion was arranged and St. Sebastian’s HospitalPseudonym for one of the hospitals from which a second opinion was arranged. There were significant delays in arranging the second opinions, so that they didn’t happen until we’d already reached agreement with CLH/London Paeds, which rendered the opinions pointless and a waste of time for all concerned. We also weren’t informed of the appointment at Seb’sAbbreviation for St. Sebastian’s Hospital, finding out about it only coincidentally on the morning of the appointment.
In summary

Decisions about care were routinely delayed, as was the communication of the eventual plans to us. Had Rumer been born prematurely, a major risk for babies with trisomy 18, both we and the care team would have been placed in an extremely difficult situation, with the possibility of needing to seek emergency court orders due to disagreements about what treatment was in Rumer’s best interests. Timely care-planning would have avoided this risk. Delays in care-planning also took up significant time and caused an enormous amount of undue stress for us during the pregnancy. This time would have been better used to benefit Rumer in other ways.

We would like:
  • An acknowledgement that care-planning and discussion of proposed care plans were delayed, leading to the risks of conflict/disagreement, ill-considered treatment or an inappropriate decision not to treat had Rumer been born prematurely. This was not in her best interests and had a negative impact on our experience of pregnancy.
  • An undertaking that Central London Hospital NHS Foundation TrustPseudonym for the hospital trust that managed the hospitals that provided Rumer’s and Helen’s care will commit to providing timely care-planning to all families in similar situations, in order to reduce parental stress and ensure that sufficient time is allowed for all parties to consider and discuss the care that is to be provided to newborns with an antenatal diagnosis.
See Appendix 2 (page A‑7) for an amalgamated list of outcomes we would like.

Concerns about the care of Rumer Gomez

Appendix 3: George DonnachiePseudonym for the Fetal Medicine & Obstetric consultant email – Request to delay multidisciplinary meetingMultidisciplinary meetingA meeting of some or all members of a multidisciplinary team. See MDT (below) for details. (03 Jul 2015)

Concerns about the care of Rumer Gomez

Appendix 4: Our email – Professionals to see (11 Jun 2015)

Concerns about the care of Rumer Gomez

Appendix 5: Ida LeighPseudonym for the neonatologist who initially served as Rumer’s named consultant email – Initial neonatalNeonatal UnitSee Who’s Who entry care plan (14 Jul 2015)

Concerns about the care of Rumer Gomez

Appendix 6: Khushi HollowayPseudonym for the Consultant Midwife who became closely involved with the pregnancy emailProvisional obstetricObstetricSee Obstetrics department/midwiferyMidwiferySee Midwifery department care plan (29 Jul 2015)

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