Complaint about Rumer’s care, part 5

Pregnancy 2

• PREGNANCY 2: Failure to consider all care management options

  • In summary
  • We would like

Concerns about the care of Rumer Gomez

Pregnancy 2: Failure to consider all care management options

2.Failure to consider all care management options

From soon after diagnosis, we felt there was an unwritten policy about how babies with trisomy 18 should be managed, which seemed to be that there should be no invasive interventions, and no treatment given for the purpose of prolonging their lives. This unofficial policy precluded open discussion about any alternative approaches. Other options were never mentioned by medical staff, and when we brought them up, they were usually dismissed or deflected. Thus we felt strongly pushed down a palliative care only pathway, and that we were not supported in making informed choices for our daughter’s care.

Complaint about Rumer’s care, part 4

Pregnancy 1 & Appendices 36

• PREGNANCY 1: Delays in care-planning

  • In summary
  • We would like
• APPENDIX 3: [George Donnachie] emailRequest to delay multidisciplinary meeting (03 Jul 2015)
• APPENDIX 4: Our emailProfessionals to see (11 Jun 2015)
• APPENDIX 5: [Ida Leigh] emailInitial neonatal care plan (14 Jul 2015)

  • Term birth
  • Preterm birth
  • Further action planned
• APPENDIX 6: [Khushi Holloway] emailProvisional obstetic/midwifery care plan (29 Jul 2015)

Concerns about the care of Rumer Gomez

Pregnancy 1: Delays in care-planning

Pregnancy

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.

Complaint about Rumer’s care, part 3

Preamble & Appendix 2

• Preamble
• APPENDIX 2: Amalgamated list of outcomes we would like

  • B PREGNANCY

    • 1. Delays in care-planning
    • 2. Failure to consider all care management options
    • 3. Access to further opinions
    • 4. Attitude of staff
  • C [CLINICAL ETHICS COMMITTEE]

    • 1. Referral to [CEC] and involvement of patients/parents
    • 2. Handling of Rumer’s cas by the [CEC]
  • D BIRTH

    • 1. Neonatal management at birth
    • 2. Other concerns
  • E NEONATAL UNIT

    • 1. Medical care
    • 2. Nursing
    • 3. Communication & culture
  • F [BLYTON WARD]

    • 1. Infection control
  • G PAEDIATRIC INTENSIVE CARE UNIT (PICU)

    • 1. Medical care
    • 2. Nursing
    • 3. Comminucation & culture
    • 4. Care during Rumer’s final 24 hours
  • H PAEDIATRIC CARDIOLOGY

    • 1. Cardiology issues
  • I PAEDIATRIC PALLIATIVE CARE

    • 1. Palliative Care issues
  • J OVERALL

    • 1. Trisomy 18
    • 2. Working with parents
    • 3. Professionals’ meetings
    • 4. Other issues

A bit of an administrative update, this one: see below for the short introductory part of the complaint, followed by Appendix 2, which is a list of all the outcomes we’re hoping for as a result of the complaint. The latter is compiled from shorter lists throughout the document, and in order for it to make sense, only the outcomes which relate to the parts of the complaint that have been published to date are shown. We will add to the list as further parts of the complaint are published.

Complaint about Rumer’s care, part 2

Covering letter (Appendix 1)

• Appendix 1: Covering letter with this document

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).

Complaint about Rumer's care, part 1

One year ago today...

Today, 24th October 2017, marks a double anniversary. Not only is it Rumer's 25-month birthday, it is also one year today since we submitted a complaint to the hospitals that provided her care.

After Rumer died, we made requests under the Data Protection and Access to Medical Records acts for not only Rumer's hospital notes, but also all meeting minutes, emails and so on pertaining to her and/or us. It took us a long time to get them all and they came piecemeal and in no particular order. Even now, it seems unlikely that we have all the documents there were. For example, it has been claimed that one significant meeting was not minuted and that consultant meetings are routinely unminuted.

The myth of the irrational parent

Will parents really do anything to save their child?

This article by Zoe Williams in the Guardian today is just another in a long line of articles about the case of Charlie Gard saying exactly the same thing.

The accepted message is:

• The doctors are dispassionate and able to accept that the child is desperately ill and there is nothing to be done.
• The parents are desperate to save their child at any cost, will do anything at all to save him and are behaving in an irrational way; however this is okay because any parent would do the same.

Rumer's Story, part 20

Neonatal & Palliative Care meeting: II

Thursday 2nd July 2015
27 weeks pregnant

Keen to bring the discussion back to treatment options, Chris proceeded to describe our understanding of the pregnancy risks and how we wanted to mitigate them (eg. close monitoring, c-section). He wanted to show our thinking about how to manage the obstetric problems, since that was what we were most familiar with at this point, thinking that that would give Ida an idea of the general approach we wanted to take in order to set the tone for the discussion about postnatal management. He also wanted to illustrate that we were realistic about the high rates of stillbirth and neonatal death; that we were going into this with our eyes open.