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THE solicitor for the family of the third baby to die of pseudomonas at the Royal Victoria Maternity Hospital in January, has told The Detail of their pain and disappointment following the publication of phase two of the Troop Review.
Belfast solicitor, Ernie Waterworth of McCartan Turkington & Breen law firm, who represents the family of “Baby 3”, has called a section designed to address the experiences of the families “patronising” and criticised it for failing to address specific concerns flagged up by the family.
The Detail can reveal that on January 14 2012, the mother of “Baby 3” received a phone call from a nurse advising that their baby’s skin had been torn while attempting to place an intravenous line. By January 19 the baby had died. However, when the family requested medical records following their baby’s death, they contained no reference to this incident.
Mr Waterworth first raised the absence of crucial information from the records in early April when he met the review team with the family – this incident was missing from the record and, in fact, the notes for January 14 amounted to less than half a page, compared with numerous pages devoted to other days in the life of “Baby 3”.
However the Belfast Trust this afternoon issued a statement on the subject: “Belfast Trust have scrutinised the patient records and have found no gaps. We are not aware of any redactions and would be happy to discuss where the family believe these occurred,” it stated.
The family raised these concerns last month with the Belfast Trust, Health Minister Edwin Poots and the Troop Review team who were charged with reporting on the circumstances surrounding the outbreak, these issues have not been included in the final report.
In a previous article from April this year, we reported on how the family of “Baby 3” had spoken for the first time to say they had concerns about gaps in the hospital records provided to them following the death of their child.
Speaking on behalf of the family, Mr Waterworth says their concerns are now greater than ever.
He said: “My Initial thoughts and the thoughts of the family, with regard to this specific section of the report, is the feeling that it is a very patronising document. Specifically it doesn’t address the issues the family raised which they believe are in the remit of the terms of reference of the review team."
UNANSWERED QUESTIONSOn May 25 each of the families received a letter from chair of the review team, Professor Pat Troop, containing a draft of the “Family Report” ahead of full publication.
The families were asked to respond to the report within only three days.
The Family Report outlines the experiences of nine families whose babies had been colonised or infected with pseudomonas as well as some of those whose babies had died.
The report details how some of the families were concerned that at one stage there had been five babies in a room and it was “incredibly cramped”. Another family felt that the room had become “the dumping ground” for those babies colonised with pseudomonas.
It also outlines that the parents of those babies who had died, talked about the individual circumstances of their “birth, short life and death of each of their babies”.
It claims that parents had been left with several unanswered questions and wanting to know if the deaths of their babies could have been prevented.
However Mr Waterworth has told The Detail that the family of “Baby 3” is extremely distressed that a number of serious concerns specifically raised with Prof Troop and the review team, have not been included in the “Family Report” and many questions still remain unanswered.
On January 14 2012, the mother of “Baby 3” received a phone call from a nurse advising that their baby’s skin had been torn. The significance of these cuts was unknown to the family of “Baby 3” at the time.
The family would subsequently learn that this incident seemed to be “missing” from the bundle of detailed medical records outlining their baby’s care.
By this stage they had not been made aware of the term “pseudomonas” and only became aware when they were handed a leaflet about the infection on January 18 – the day before their baby died.
Mr Waterworth said: “When the mother actually went up to the hospital, she found three cuts, there was a cut on the cheek, a cut on the left arm and a cut on the foot. They were tears in the skin, the type that would have been caused by the removal of adhesive tape or plasters, and it’s clear to see the significance of that.
“Whether or not it is the case that the medical records are missing or have not been written up properly is still a mystery. The family have still not received clarification either way yet.”
Mr Waterworth believes there are still a number of issues outstanding.
In the letters to Prof Troop and the Belfast Trust, Mr. Waterworth also highlighted that there appeared to be redactions contained within the medical records – this issue has not been addressed to date.
He also asked for an explanation as to why the use of non sterile water was in place in January 2012, when the familily’s first child who was born in the same unit in 2009, had a strict regime of using sterile water only. Mr Waterworth says the family still remains in the dark over this issue also.
An RQIA spokesperson said: “In line with the terms of reference for the review, RQIA’s review team examined the outbreaks of pseudomonas and their management. During meetings with individual families, the review team advised any families to speak directly to their doctors within the relevant trust to discuss issues relating to their individual clinical management.”
TERMS OF REFERENCEIn February 2012 the Regulation Quality & Improvement Authority (RQIA) announced the Pseudomonas Review terms of reference. It outlined that the team would “examine any other relevant matters which emerge during the course of phase two of the review.”
In the first interim report published earlier this year, it made reference to the fact that many babies who developed the infection in Northern Ireland’s neonatal units had required invasive procedures such as putting in intravenous lines and intubation for ventilation. The report concluded that there was therefore a high risk that such procedures could lead to invasive infection when a baby was colonised or the skin contaminated with pseudomonas.
Mr Waterworth says it is still unclear as to why such a significant piece of information is not included in the medical records for “Baby 3”.
“The records for the 14th January are basically non-existent. The baby’s life was very short, but when you look at the depth of papers involved in the medical records, you get an idea that the standard of care by the nurses and doctors was indeed very high.
“Each day there are double sided pages of the medical records being completed. The absence of a record in relation to a tear is extremely strange.”
On the day the first interim report was published, the family of “Baby 3” met with Health Minister Edwin Poots and a number of his advisers. During this meeting the family outlined their concerns and they were assured that they would be addressed in full, but that the appropriate agency to contact in the meantime was the Belfast trust.
On April 16 Mr Waterworth wrote to the Belfast Trust highlighting these concerns and to date has only received an acknowledgement that they received his letter.
He said: “At the time of the interim report, the family were invited to meet the minister and I joined them on that occasion. At that stage the minister appeared very genuine and he directed a full response and assured us that all our concerns would be addressed. We’re still waiting.”
RELEVANT INFORMATIONThe Belfast Trust’s policy in relation to infant hygiene in the Royal Jubilee’s maternity ward was developed in 2002 and was in place during the pseudomonas outbreak in January 2012. It outlines a number of measures that should be put in place when assessing and attending to infant hygiene needs.
Following guidance, the policy was updated in March 2012. It includes specific details on the importance of maintaining the integrity of the skin when preventing infection as it “serves as a barrier against infection.”
Despite direct reference to this in their updated policy, the family of Baby 3 are increasingly frustrated that they have received no explanation from the trust as to why the breaks in their baby’s skin is not referred to in medical notes.
On April 25 2012 Mr Waterworth sent a further letter to Professor Troop once again under lining the concerns around the phone call and the “missing records”. However, on the 11th May 2012, Professor Troop responded saying that any reference to medical records should be “re-directed to the appropriate trust.”
Following this response, The Detail contacted the trust about the missing records. A statement issued by the Trust said:
“Pending completion of the final report on pseudomonas, we cannot discuss specific questions on the issue.”
However following the publication of the full report, the trust issued a statement on the subject: “Belfast Trust have scrutinised the patient records and have found no gaps. We are not aware of any redactions and would be happy to discuss where the family believe these occurred,” it stated.
When we contacted RQIA on the matter ahead of the publication of phase two, they said that the review would consider “all relevant information in line with the terms of reference.”
Mr Waterworth says the family of “Baby 3” have been left completely let down by the Troop Review and are determined to get answers from the trust.
He said: “It’s extremely disappointing for the family; many questions remain unanswered for them during this traumatic time. The investigation team will have cost an enormous amount of money and it’s sad that it has not resolved the issues at hand.
“The family are now seeking advice in what further legal recourse is available to them and I will be advising them in that regard.”