15 February 2018

Complaint about Rumer’s care, part 3

Preamble & Appendix 2

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.

We’ll get to the meat of the complaint in the next post, starting with the first set of problems we encountered during pregnancy: delays in care-planning.

Concerns about the care of Rumer Gomez

Preamble

Please see covering letter (Appendix 1, page A‑5) for a summary of Rumer’s journey through the hospital.

We have specific complaints about some departments’ management of Rumer’s care. There were also some general issues which recurred across many departments. We shall therefore address the specific issues chronologically, by subject or by department as appropriate before returning to the general themes.

Under each section, we have broken the issues down into numbered and lettered points, followed by a summary and a list of outcomes we would like. These lists are amalgamated under Appendix 2 (page A‑7).

Thank you for reading.

Chris Gomez & Helen Roper
Rumer’s parents

24th October 2016

Sections on Document Navigation and Reference (hospital numbers etc.) & Table of Contents omitted

Concerns about the care of Rumer Gomez

Appendix 2: Amalgamated list of outcomes we would like
  1. PREGNANCYSpot the deliberate mistake!The list starts with item B rather than A because of an irritating quirk in the way that our word processor handled lists of this type
    1. Delays in care-planning
      1. 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.
      2. An undertaking that Central London Hospital NHS Foundation TrustPseudonym for the hospital trust that provided almost all of 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.
    2. Failure to consider all care management options
      1. An acknowledgement that care-planning for babies without fully informing and involving parents is no longer an acceptable practice.
      2. An apology for the failure to provide full information about all the options and to fully involve us in the decisions about the care to be provided to Rumer.
      3. An acknowledgement that widely circulating care plans that have not yet been discussed and agreed with parents is not acceptable and should not have happened.
      4. An assurance that future parents with a prenatal diagnosis of trisomy 18 will be:
        1. informed of all care management approaches, including the potential use of active treatment options such as intubation and surgeries where relevant.
        2. fully involved in decision-making about their child’s care.
      5. An assurance that the Trust will produce a policy in order to guide health professionals in having these detailed discussions with parents who have a prenatal diagnosis of trisomy 18 (or similar conditions). This will ensure consistency, and that all parents will be given full information.
    3. Access to further opinions
      1. An assurance that Trust guidance relating to making referrals for second opinions will emphasise the importance of avoiding bias.
      2. An assurance that future families with a diagnosis of trisomy 18 for their child will always be given access to neutral second opinions.
    4. Attitude of staff
      1. An acknowledgement from individual members of staff that their behaviour was inappropriate. We would appreciate apologies where appropriate if staff members feel moved to do so.
      2. An acknowledgement from the Trust that the behaviour we experienced from some members of their staff was inappropriate and unacceptable.
      3. Details of any actions the Trust has taken or will take to ensure that other families do not experience similar lapses in professional behaviour.
  2. CLINICAL ETHICS COMMITTEEPseudonym for the trust’s Clinical Ethics Committee
    1. Referral to CECClinical Ethics Committee and involvement of patients/parents
      1. An assurance that when a case is referred to the CEC, the patient and/or their representative is informed of the referral as soon as possible.
      2. An assurance that when a referral is made to the CEC, patients/representatives are given details of the process and contact details of someone who will be able to correspond with them about any concerns or questions they may have.
      3. An assurance that when a referral is made to the CEC, all patients/representatives are offered the opportunity to submit their views and any supporting information in writing prior to the meeting and are given the option to attend if they wish to do so.
      4. A commitment that information about and contact details for the CEC will be placed on the Trust website and that contact details will be available via the switchboard.
    2. Handling of Rumer’s case by the CEC
      1. A commitment that patients and/or their representatives will be informed that any written submission they make to the CEC will be circulated to all, including the clinical team, and that patients/representatives will likewise receive any submission made by the clinical team in advance of the meeting date.
      2. An assurance that patients and/or their representatives will be clearly informed of the question that the CEC will be considering when the referral is made, and that any changes will be communicated to them without delay, and in any case at least 72 hours before the meeting.
      3. An assurance that either patients/representatives and clinicians will leave the meeting when the CEC begins its discussions, or that both patients/representatives and clinicians will be allowed to stay for the entire discussion. This will avoid inadvertent bias. Whichever option is chosen, who will be allowed to be present will be clearly communicated to all prior to the meeting.
      4. A commitment that patients/representatives will be given a copy of the full minutes from the meeting as part of the general circulation, regardless of whether they attended. They should also be routinely offered the opportunity to challenge any inaccuracies they feel are contained within the minutes.
      5. Answers from the Neonatal teamNeonatal UnitWho’s Who entry to the following questions:
        1. What were the views of the Neonatal team at the time the CEC referral was made as to what treatment should be offered to Rumer?
        2. What were the views of the Neonatal team at the time of the CEC meeting as to what treatment should be offered to Rumer?
        3. What did the Neonatal team see as the purpose of the CEC meeting, given that they claimed that they always would have provided clinically appropriate treatment to Rumer, with nothing being denied purely because of her trisomy 18 diagnosis?
      6. An apology from Dr LeighPseudonym for the neonatologist who initially served as Rumer’s named consultant for:
        1. Her statement to the CEC that a no surgery option had never been discussed with us. This is clearly contradicted by her statements to us in prior meetings and by the plan that she circulated on 14th July 2015.
        2. Her statement to the CEC that the parent’s [sic] goal has always been towards prolongation of life for their baby until their recent submission to the ethics committee where they have indicated that they would be willing to reassess the situation. We do not believe that she misunderstood our clearly stated and often repeated views to this extent. We can only conclude that this statement was an attempt to manipulate the CEC by misrepresenting us.
      7. A full response to each lettered point.
  3. BIRTH
    1. Neonatal management at birth
      1. An acknowledgement that the Neonatal team’s communication with us was poor and a commitment that all Neonatal staff, including senior staff, will receive training in appropriate communication with parents in high-stress situations.
      2. A commitment that, in future, all care plans will be forwarded to all relevant members of the Neonatal team and will be easily accessible to them when needed.
      3. A commitment that care plans will be documented very clearly and succinctly to make them usable by staff in high-pressure situations. Lengthy letters that incorporate plans in their text are not the most user-friendly means of achieving this.
      4. A full response to each lettered point.
    2. Other concerns
      1. A full response to each lettered point.
      2. A commitment to ensuring that resuscitaires can quickly and easily be deployed in any room in which a birth may occur.
  4. NEONATAL UNIT
    1. Medical care
      1. A commitment from the Neonatal Unit that parents will be offered the opportunity to meet regularly with their baby’s named consultant to review progress and raise any concerns.
      2. A commitment from the Neonatal Unit to provide the facility for parents to contact their baby’s named consultant (or a nominated deputy) if they have concerns about the overall management of their baby, and to communicate this clearly upon admission.
      3. A full response to each lettered point above.
    2. Nursing
      1. A full response to each lettered point.
    3. Communication & culture
      1. A detailed explanation of how the Neonatal Unit is planning to work towards family-centred care in line with the Bliss Charter standardsBliss Charter standardsSee Who’s Who entry and other guidance for good practice.
      2. A detailed explanation of how the Neonatal Unit is planning to work towards shared decision-making between clinicians and parents as a standard practice, in line with the Bliss Charter standards and other guidance for good practice.
      3. An acknowledgement that, regardless of intent, the Neonatal Unit failed to provide family-centred care to Rumer and ourselves, and an explanation as to why this failed.
      4. An acknowledgement that, regardless of intent, the Neonatal Unit failed to offer us full shared decision-making about Rumer’s care, in particular in relation to the decision-making around management of oxygen desaturations and work of breathing, and an explanation as to why this came about.
      5. An explanation of the consent policies on the Neonatal Unit, including:
        1. their content
        2. an explanation of the basis for their content, for example:
          1. why consent is or is not required for a particular procedure
          2. why consent sometimes needs to be written and other times verbal
          3. why consent is assumed for repeated procedures
          4. what provision there is for withdrawal of consent
          5. etc.
      6. A detailed response to point 3.b)i (page 32).
      7. An explanation of how the unit is working towards the provision of informed choice for parents in relation to all aspects of their baby’s care.
      8. A response to point 3.a)v (page 32).
  5. BLYTON WARDPseudonym for the paediatric ward at which Rumer spent a few weeks
    1. Infection control
      1. An explanation of the infection control policy relating to Blyton Ward and how it is intended to mitigate the risk posed to high-risk children.
      2. An acknowledgement that infection control practices on the ward were inadequate to prevent Rumer contracting RSV.
      3. A commitment to improve infection control in order to prevent other children suffering a similar fate to Rumer, and details of how this will be achieved.
      4. An acknowledgement that we were not adequately informed of the risks to Rumer posed by infection on the ward, either before or during her stay.
      5. A commitment to informing parents as early as possible of the risk of infection, including a individualised assessment of the resulting risk to their child, so that they may make informed decisions.
  6. PAEDIATRIC INTENSIVE CARE UNIT (PICU)Paediatric Intensive Care Unit (PICU)Who’s Who entry
    1. Medical care
      1. A commitment to implementing a named PICU consultant system, with the opportunity for parents of long-term or critical PICU patients to have regular discussions with their child’s consultant (or a named deputy) about the plan of care for their child and any concerns they may have.
      2. An explanation of the current policy and practice around implementing, communicating and managing limited resuscitation plans on PICU.
      3. An explanation of how this went wrong for Rumer.
      4. A commitment to ensuring all limited resuscitation plans are fully discussed, quickly and clearly put in place once agreed, and for both scope and purpose of each individual plan to be communicated to and fully understood by all relevant members of staff.
    2. Nursing
      1. A full response to all elements of point 2.a) (page 41).
      2. An explanation of why, given our objections (detailed under point 2.b)i, page 43), team nursing was considered to be in the best interests of Rumer and/or ourselves.
      3. An apology for the failure to address our concerns and the resulting negative impact on Rumer and on ourselves.
      4. An commitment from the unit to formally evaluate the practice of team nursing on PICU and implement improvements in line with the outcome of the evaluation.
    3. Communication & culture
      1. An acknowledgement that the team’s concerns about Rumer’s progress should have been communicated to us earlier.
      2. A commitment to fully informing parents of concerns as soon as they arise and involving them in all care-planning discussions about their child.
      3. A commitment to fully informing parents of all errors relating to their child’s care, however minor, as soon as possible.
    4. Care during Rumer’s final 24 hours
      1. A full response to each lettered point.
      2. An acknowledgement that the care Rumer received on 31st December was inadequate and caused her unnecessary and prolonged suffering.
      3. An apology for the failures to recognise Rumer’s deterioration and to take our concerns seriously, and for the unnecessarily difficult situation that placed us in.
      4. An explanation of how the unit will ensure that deteriorations in children’s conditions will be identified and acted upon in a timely fashion in order to avoid the issues we encountered.
  7. PAEDIATRIC CARDIOLOGYPaediatric CardiologyWho’s Who entry
    1. Cardiology issues
      1. A detailed written explanation from a senior member of the Cardiology team of the department’s conduct in relation to Rumer, including full responses to each lettered point.
      2. Depending on the content of the written response, it may be appropriate for us to meet with the relevant teams (including Cardiology) and/or individuals to discuss what went wrong in Rumer’s case and how it will be avoided in the future.
  8. PAEDIATRIC PALLIATIVE CAREPaediatric Palliative CareWho’s Who entry
    1. Palliative Care issues
      1. A detailed explanation of what the Trust sees as the role of the Paediatric Palliative Care team.
      2. A detailed explanation of what the Trust would have expected the Paediatric Palliative Care team to provide to Rumer.
      3. Copies of all notes taken by the Paediatric Palliative Care team in relation to Rumer/ourselves. If notes relating to a particular meeting etc. are not available, an explanation as to why.
      4. An acknowledgement from Dr BlackmanPseudonym for the Paediatric Palliative Care consultant that some of her comments were inappropriate and insensitive. We would appreciate an apology if she feels moved to do so.
      5. An acknowledgement from the Trust that the behaviour we experienced from the Paediatric Palliative Care team was inappropriate and unacceptable.
      6. Details of any actions the Trust has taken or will take to ensure that other families do not experience similar lapses in professional behaviour.
      7. Full responses to points b), c) and e) (pages 55, 56 and 57 respectively).
  9. OVERALL
    1. Trisomy 18
      1. Full explanations from the following departments of what they have learned from Rumer’s case and how this will change their management of future children presenting with a pre- or postnatal trisomy 18 diagnosis:
        1. Fetal MedicineFetal MedicineWho’s Who entry/ObstetricsObstetricsWho’s Who entry
        2. Neonatology
        3. General PaediatricsGeneral PaediatricsWho’s Who entry
        4. PICU
      2. Copies of:
        1. The Trust’s current policy on counselling parents whose child has a new diagnosis of trisomy 18.
        2. Any other policies that reference trisomy 18 directly or indirectly.
    2. Working with parents
      1. A full response to point a) (page 61)
      2. A full response to all elements of point b) (page 62)
      3. An explanation of why the Trust does not require either a parental signature or an explanation as to why it is not available when a limited resuscitation plan is implemented for a child.
      4. A commitment to require parental and/or patient’s signatures (as appropriate), or an explanation as to why such signatures are not possible, for all paediatric limited resuscitation plans.
      5. A full response to point c) (page 63).
      6. A full explanation as to why a co-ordinated approach to Rumer’s care was not agreed by the Trust antenatally as discussed under point 2.c)v (page 63).
      7. A full response to points 2.d)i and 2.d)ii (pages 64 and 65 respectively).
      8. An apology from the Trust for how our disagreement with the medical teams was handled.
      9. A commitment to ensuring staff are familiar with and routinely follow professional and Trust guidance for situations in which parents/potential parents disagree with the proposed care of their child.
      10. A full response to all elements of point e) (page 65).
      11. A commitment to giving parents open access to their child’s medical records.
      12. An explanation as to how the Trust will improve its working with parents, particularly in the areas of shared decision-making, informed consent, co-ordination of care and information management.
    3. Professionals’ meetings
      1. An explanation of the official Trust policy on the attendance of patients/parents at multidisciplinary and professionals’ meetings.
      2. The opportunity to meet with someone who was present at the 29th July 2015 multidisciplinary meeting about Rumer’s care who is able to feed back to us about the discussions that took place and conclusions reached at that meeting.
      3. An explanation of the Trust policy on documenting professionals’ meetings.
      4. A commitment from the Trust to provide sufficient administrative support to enable all professionals’ meetings to be adequately documented.
      5. Full, detailed responses to each individual element of point c) (page 68).
      6. The opportunity to meet with an appropriate member of the management team to feed back our concerns about the 14th December 2015 multidisciplinary meeting.
    4. Other issues
      1. Full responses to each lettered point.

Note: The desired outcomes that relate to parts of the complaint that have not yet been published are not shown. This appendix will be updated as publication of the complaint progresses.

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