Independent Investigations Reports
After Jessica’s original presentation to the Ipswich Hospital NHS Trust Accident and Emergency Department 2nd August 2015 the family had raised concerns about Jessica’s drug regimen and treatment pathway. Not that we were not appreciative of the efforts people had made but we were extremely shocked when we were allowed into CCU to see her. We are not clinicians, but we do need to understand and we do have the right to be given some time to discuss what actually happened during her treatment. We do not pretend to understand what they do but we felt some explanation about their basic investigations and information on their initial diagnosis would be helpful.
I am sure parents will understand “if you had an evening meal with your child some hours earlier and now she is in an induced coma, nothing makes sense.” In particular, her current condition was causing concern, we wanted to know why she was in a coma? What had happened during her treatment?
All we knew was she had a persistent cough for a day, a pulsating vein in her neck was beating rapidly and she looked anaemic. Her baby was 15 days old, the 111 service had advised us to get here checked out, so we did. Discussions about her immediate treatment in CCU would have to wait until the doctors and consultants could speak to us.
First days in CCU
In A&E, the family were told that Jessica had arrived with an (SVT) Super Ventricular Tachycardia. To us that just meant she had a fast heart rate, it was later described by doctors as (AF) Fibrillation/Flutter that then changed to AVNRT (AV nodal reentrant tachycardia). I am quoting all these medical terms from my reference notes and records but didn’t know what any of them really meant at the time and probably still don’t to some extent.
In CCU we were told Jessica had Dilated Peripartum Cardiomyopathy, this was linked directly to her pregnancy and had caused her heart to enlarge during this period. We were advised Jessica may need an external heart pump, transplant or other life support measures by CCU staff. This would only be determined once her neurological assessment had been completed. Her baby boy Lewin was 15 days old and doing well, the family were devastated.
Her pulsating neck vein remained obvious in CCU and continued for another four days. Her pulse rate was high. The family were advised until Jessica’s (EEG) Electroencephalogram and CT Brain Scan were done there was no more information available. She remained in an induced coma and was unresponsive to touch and when spoken to. Initially, in the first day of CCU, she would respond to my voice and shed tears when I spoke to her.
Subsequently, we were advised Jessica had 2) Congestive Heart Failure and this had resulted in 3) Tachycardia Mediated Cardiomyopathy, which later changed to 4) Tachycardia-induced Cardiomyopathy. By now I was very confused about her pathology but knew her (EF) Ejection Faction was recorded as 10% two hours after her cardiac arrest. This was explained as the level of heart muscle function (pumping), which by all accounts was very low. There was also some discussion about her type of arrhythmia.
We (the family) debated whether her condition was in some way as a result of the cardiac arrest sustained in resus and was assured it was not. I had learnt that there was a Post Cardiac Arrest Syndrome which in layman’s terms meant her heart, organs and brain may suffer damage after a cardiac arrest but was not likely a lasting condition unless CPR was lengthy.
Symptoms may include:
- post-cardiac arrest myocardial dysfunction
- systemic ischaemia/reperfusion response
- persistent precipitating pathology
- post-cardiac arrest brain injury
A few days into CCU, Jessica’s EF was 20%, then 40% and by day 24 it was 54%. I personally felt confident her heart had suffered a sustained arrhythmia and convinced myself she was making a massive recovery. I was also aware that this syndrome could mimic Sepsis and quickly learnt Jessica had Sepsis. Over the coming days, Jessica suffered multiple organ failures and was put on dialysis.
By February 2016 when Jessica went to see Professor Gerry McCann at Northampton, her MRI heart scan demonstrated an EF of 63% and he described her heart scan as “Essentially Normal” He described a normal person heart function as having an EF of around 65-67%.
Jessica has since been back to Papworth Everard Hospital and her echocardiogram showed an EF of 67% which was described as a fully functioning heart.
First contact with Trust staff
On the 5th August, we went to the Accident and Emergency department and asked to speak to someone who could explain the treatment Jessica had received. We also asked about her journey through their department. (The Clinical Lead) Dr H, (Head of Nursing Division 1) FB, (Head Nurse ) DE, the Trusts PA, myself, Jessica’s Mother and ET, Jessica’s partner were organised into a meeting room. The meeting was recorded on an iPhone and after one hour of discussions, we proceeded to the Accident and Emergency department for a walkthrough, going through triage, minors, majors to resus where Jessica had her cardiac arrest. Jessica had passed through all these areas with her Mother 2-3rd August and we had many questions about that journey, timeline and treatment.
It was clear from those we spoke to that they were not present during Jessica’s treatment and although they were helpful, they could only “surmise.” This was a word used many times along with “we hope so” and “I am speculating, but we expect they did” we were assured an incident such as this will likely merit a (SCIG) meeting (Serious Clinical Incident Group). Within that formal process, we were again assured our questions and concerns would be included. Family and relatives must have involvement during any investigations in accordance with the Serious Incident Guidelines.
August 4th = Doctors rotation, no not yet, have they given their statements? Our concerns grew as we discovered some of the clinicians had left the Trust without providing (Serious Incident Reports). We knew this would be crucial if we were to fully understand everyone’s involvement.
It was very apparent from this meeting 5th August that some of those involved in Jessica’s treatment and care had not been spoken to or given statements. We realised the 4th August was also the rotation day for doctors, so in short, some of those involved had moved on.
Where’s the rota/roster record for that evening? You may ask, I will tell you all about that another day…
Second Contact with Trust staff
On 27th August 2015, 24 days after Jessica’s cardiac arrest, I contacted a staff member at the Ipswich Trust and asked if there was any news on the progress of Jessica’s serious incident report (SIRI) report? Having heard nothing from the Trust for 22 days, a letter headed document was quickly produced in a corridor and soon after the minutes arrived from the 5th August meeting. The Trust had not included any of the discussions during the walkthroughs within their Accident and Emergency department. So none of the questions and concerns was included in their minutes. The Trusts PA had not accompanied any of us to the ED area so had not documented any of the discussions which continued during the walkthrough.
Met with vacant looks and silence.
As we had an audio recording of all our questions we had asked in A&E we felt justified in raising those questions during a later meeting with the Trust. We felt some of those questions were not so welcome now and were met with vacant looks and silence. The agenda of that meeting was chaotic and unclear. We left with less information than we had gained before and remained confused about the Hospitals attitude.
Third Contact with Trust staff
On 23rd September 2015, the first SIRI report was published on the hospitals (STEIS) Strategic Executive Information System and delivered to the family some days later.
The Duty of Candour within this Hospital Trust is not understood or complied with in our view and we bear witness to the alarming culture of avoidance, attempting to steer outcomes and denials from the onset. “By now we were becoming concerned about the Hospitals agenda.” When a serious incident occurs within an HNS organisation and the patient has received serious harm, the Trust does have a duty and an incident like this is supposed to trigger the appropriate response as detailed in this guidance from NHS England.
We had thought the Trust would engage with the family and help us understand what had happened to our daughter. In a clear and concise way, we asked What, Why, How and Who? this had happened. Empathy and consideration for the families concerns quickly faded away in the haze of governance, accountability and arse covering.
“Empathy and consideration for the families concerns quickly faded away in the haze of governance, accountability and arse covering. The meetings became dehumanised, there appeared to be some collusion and repetitive answers to rehearsed questions.”
When questions were probing, they retorted “I don’t know the answer to that, but I will find out” of course they never followed up or made good any of their promises and at best this was avoidance, at worst intentional. Some tasks agreed by Trusts governance staff were undertaken, then denied to have taken place. As a family, we were weak from the constant worry about Jessica’s health, but as a team, we were resolute and needed to understand more in detail.
We quickly realised it would be necessary to record every Trust meeting and to that end, we have captured all of the Trusts original responses on audio in family meetings. Having consulted a family medical expert I took him to one of our meetings, he remains shocked by some of their responses to genuine questions, but not surprised by the Trusts avoidance.
Family Liaison Person = 6, I think but may have lost count
Since those meetings, I have transcribed 64,000 words from the audio files and organised them into specific data files as a record of the minutes of each meeting. After our third meeting, we had encountered six different members of staff from the Trust who were acting as the family liaison/contact person. This created a huge problem for the family who had to recount their account/evidence from the incident and their experience to date in dealing with the Trust, reliving the whole experience and discussing in detail what had been witnessed “was very painful especially for Jessica’s Mother Sue.”
(IESCC) Ipswich and East Suffolk Clinical Commissioning Group
In March 2016 we wrote to the commissioners who oversee all providers in this area (IESCC) Ipswich and East Suffolk Clinical Commissioning Group We raised our concerns about various matters we had witnessed that we felt breached national and local guidelines (In dealing with serious incidents). We also discussed the conduct of senior members or governance and risk, who we felt had adopted a strategy to wear us down and make the most basic investigations and answers ‘off the table’. We felt some were being worked round and otherwise ignored and In preference to getting things done. We also reported our concerns to the CQC.
We demonstrated evidence of the conduct of some of those involved and hoped we could work with the CCG and that they would listen and understand the growing concerns. Fortunately, we were given the time to meet the IESCCG and they have helped the family with advice on Independent Investigation processes, and procedures. They helped organise the first Independent SIRI Investigation which may not have happened without their involvement.
The GMC – Became involved after the Hospital could not or were unwilling to answer our questions.
As this is an ongoing case this section will have to remain empty for now.
The NMC – Became involved after the Hospital could not or were unwilling to answer our questions.
As this is an ongoing case this section will have to remain empty for now.
The CQC – Became involved after I reported the Trusts conduct to them.
We have reported all of the concerns on a rolling basis by email and telephone over time. Some have been followed up by the CQC and all the correspondence has been retained. I raised concerns and reported the Trusts failure to be open and honest. The default answer is “we don’t investigate individual cases” But they have assured me they are keeping a record of what has been reported and I do intend to revisit this.
The Ipswich Hospital NHS Trust
In June 2016 I wrote another formal letter of complaint to The Ipswich Hospital NHS Trust. This time I included the Medical Director, the CEO, PALS and PALS at Ipswich Hospital. “Never heard a thing…”
Disillusioned by their engagement and the feeling I was being ignored again I checked my delivery headers in my email and found my email had made a safe journey to the hospital’s servers and found all the recipients respectfully.
(CQC) Care Quality Commission
I re-contacted the CQC who had been following my correspondence with the Trust, highlighted my concern as I felt I was being ignored again. My contact in the CQC quickly followed up on those concerns and made contact with the Trust. Unfortunately, all the recipients according to the Trust had never received my email. Here is the header text from the message I sent.
Along with each individual recipient came a message and the delivery IP address with this message “Your message was successfully delivered to the destination(s) listed below. If the message was delivered to mailbox you will receive no further notifications. Otherwise you may still receive notifications of mail delivery errors from other systems.”
I received no bounce back or delivery failure so I considered my formal complaint with all the attached minutes had been delivered, wouldn’t you?
I am not surprised by the response from the Ipswich Hospital and have spent many months fighting the/their system, the personalities we met at board level don’t seem to understand the ‘duty of candour’ or the difference between honesty and an admission.
Clare Marx President of The Royal College of Surgeons
Finally, after the CQC’s intervention and them forwarding my email onto PALS, the CEO Nick Hulme, and the Medical Director a meeting was arranged which Clare Marx. Myself and Jessica’s Mother Sue met with Miss Marx at trust headquarters in August 2016.
We slowly, very slowly began to move forward after that meeting. Someone was actually listening to us and understood our concerns. She had understood and made recommendations to the Trust and produced a written report on her findings. A profound apology letter was posted to the family highlighting Clare Marx comments and a conclusion recommending an Investigation on the lines of a “Maternal Death Inquiry.”
This would go back to Antenatal and Jessica’s Maternity presentation back in July 2015.
May 30th, 2017 – 21 Months since Jessica’s Serious Incident
Having waited nearly six months since the new medical investigation into Jessica’s care started in 2016, we finally received information we would get to see a draft report after being let down on three earlier occasions. We would be able to read the findings from this independent investigation and we hoped it would be far broader than the previous SIRI. There were still many unanswered questions and our expectations were high.
Sadly we found although the report did offer more insight and had been a more comprehensive investigation in line the best practices it fell short in its presentation and lacked any supporting evidence from the expert panel.
The Ipswich Hospital NHS Trust assured the Investigator in 2016 after the first SIRI investigation that measures had been taken by the Trust to reduce the problems identified in the first SIRI report. Particularly in the process and lack of experience of the first investigator and training of Root Cause Analysis (RCA) and this was published in their Appendix A.
In August 2016 the Trust has informed me of the following actions that have been undertaken since but not necessarily as a result of the events involving PATIENT J and her family on 2/3 August 2015:
- Trained 7 staff members (majority governance managers in the divisions) in ‘train the trainer RCA’ to enable them to support and train staff following the commissioning of an external provider in December 2015.
- Provided training to the Executive team on the criteria for SIRI and chairing a serious clinical incident group and onward immediate actions and reporting.
The RCA methodology is supposed to be embraced as ‘best practise’ within NHS serious incident investigations so we await their response. We wrote to the Trust on 16th May 2017 but have not heard back from them.
In Conclusion, we have wasted our time with the Trust
The Trust has failed to communicate effectively with the family consistently over a two year period despite the family exercising considerable patience. The investigations and reporting processes conducted by the Ipswich Hospital NHS Trust has been judged to be ineffective, narrow in their focus and key lines of enquiry had failed to be investigated. The CCG commissioned Independent Review found Trust wide failings.
After many emails and phone calls, we finally received a report (V3) report from the Trust July 19th, 2017, the Trust considered this report concluded their investigations process. The report had omitted the initial misdiagnosis of Jessica and the trial of beta blockers, many key emergency medicine procedures were no longer detailed including the omission of consent to cardiovert a postnatal patient in a remote setting. From presentation to CCU admission there were alarming differences in the account witnessed by the Mother. The Trust had made 877 deletions from the previous draft report and in our view was not fit for purpose.
The CEO of the Trust Nick Hulme had never responded to any correspondence in two years, despite copying him into many emails. Now he firmly closed the door to any future engagement, referring us to the PHSO.
A few days later after contacting the CCG, they also followed the same instruction, closing the door to any further engagement and referring the family to the PHSO.
References and Guidelines for investigations:
SCIG reference here
SIRI reference here
The GMC here
The NMC here
The Ipswich Hospital NHS Trust Complaints Handling Policy V5 Document here
Original Serious Incident requiring investigation report here (will be updated soon)
Investigations report into SIRI conducted by (IHT) (will be updated soon)
Independent Investigation Medical report conducted by (IHT) (will be updated soon)