Debra’s story

How AvMA helped me

The advice and support I received from AvMA was invaluable. My telephone calls were always dealt with in a supportive and compassionate manner. I will be forever grateful to AvMA for allocating the support, guidance and advice provided by the caseworker.

I applied to AvMA for support and while they were unable to provide me with personal representation, they were able to offer me support and advice via the telephone. I was assigned an experienced AvMA casework who has a special interest in inquests, she remained my contact throughout. She always listened and provided support and advice explaining things clearly so that I could understand them.

One of the things, in particular, I really appreciated was when she would caution me about my expectations and what might not happen. There were a number of occasions when I did not achieve the outcome I wanted or expected but because I had been prepared for them, the impact wasn’t so hard.

After the delays with the inquest and as the final date approached, I began to lose my confidence and I was scared of letting Jackie down. I had a call with my caseworker, and she was very complimentary of the work that I had undertaken in preparation for the inquest. I can honestly say that after that call, I was confident that I was going to get through it, and I did.

Background

On Sunday 21^st March 2021, my sister Jacqueline (Jackie) Sheehan, died in the Intensive Therapy Unit (ITU) at Wexham Park Hospital, Slough.  She was 57 years old.

I became aware Jackie had started feeling unwell in January 2021.   She had been feeling very tired, was experiencing headaches, breathlessness and had low blood pressure.  She was referred to Frimley Park Hospital, Frimley by the GP on the 20^th January 2021 and returned home the same day.  She was not very happy as she felt the doctor had not listened to her and was convinced she had Covid, despite her telling him she was regularly tested by her employers.

Jackie was a Care Assistant.  She loved her job and was committed to the residents she looked after.  Jackie worked very hard during the Covid pandemic and had worked many additional hours and thought this may be the reason she was feeling unwell.

Treatment at Frimley Park Hospital and by the GP

On the 14^th February 2021, Jackie was admitted to Frimley Park Hospital after a blood test had shown deranged liver function – she was also jaundiced.

Various tests were undertaken and Jackie was treated with antibiotics and fluids.  She was discharged on the 17 February 2021 but the cause of her illness remained undiagnosed.  Her discharge papers contained a request for her GP to carry out a number of actions.  The GP arranged a further blood test two weeks later which revealed Jackie’s liver function remained abnormal and she subsequently had a telephone appointment with a consultant at Wexham Park Hospital on the 15^th March 2021.

Treatment at Wexham Park Hospital

In the early hours of Thursday 18^th March 2021, Jackie called an ambulance and was taken to Wexham Park Hospital.  In a text message to me, she wrote that she had deteriorated, was very ill and couldn’t cope any more.  Later that day, she sent another text informing she was being treated for sepsis. It never occurred to me that Jackie wasn’t going to come out of hospital.

Later that day, I was told that Jackie had urosepsis and an acute kidney injury.  The word ‘sepsis’ terrified me and I had never heard of urosepsis.  Jackie was later diagnosed with biliary sepsis, not urosepsis.  Jackie was transferred to a ward in the evening, and we spoke on the phone for a little while.  She was very worried and all I could do was try to reassure her that she was in the right place.  She told me she loved me and asked me to tell the family that she loved them.  We didn’t usually say things like that.

Jackie called me early the following morning and told me that she wasn’t getting any better, she was not passing any urine – her kidneys weren’t working.

That afternoon, I received a telephone call from an ITU Consultant informing me that Jackie was being taken to the ITU as her blood pressure was very low and she had not responded to a fluid bolus she had been given.  It still did not occur to me that Jackie would not be coming home.

On Saturday 20^th March 2021, Jackie called me but was struggling to breathe and I found it difficult to understand what she was trying to say – she wanted me to call her employer. “Is there anything you need?” I asked.  “Not right now” she replied.  They were Jackie’s last words to me.

Around 2pm, I received a call from a Consultant informing me that Jackie was not responding to treatment as they would have hoped.  It was suggested the family might want to visit.  I immediately called my Mum and Jackie’s son, Daniel.  This was all happening during the Covid pandemic, and I will always be grateful to the Consultant for arranging the visit.

I remember walking through the ITU ward and finding myself looking through the glass of a side room and saw Jackie.  She had been intubated and there were machines, wires and tubes everywhere.  Although I knew she had been intubated, for some reason it hadn’t registered that she wasn’t going to be able to talk to me – in my head, I thought we were going to have some time to talk to each other but of course, it was too late.

Daniel arrived next and, needless to say, he broke down uncontrollably.  Daniel and I had a long conversation with the Consultant who explained everything they were doing.  We voiced our concerns about the lack of diagnosis during Jackie’s admission to Frimley Park Hospital and her subsequent discharge.

The Consultant suggested I go home and said they would call me if things changed.  I didn’t want to go home as I was scared of Jackie dying without me being there, but the Consultant reassured me, and I returned home.  Sometime after 11pm, I received the call I was dreading.  I was told Jackie’s condition was worsening and that the decision had been taken to withdraw support.  I was by Jackie’s side and held her hand while they turned off the machines.   Jackie died at 1.04am.  I kissed Jackie’s forehead and made her a promise.  Once again, I expressed my concerns to the staff about Jackie being discharged from Frimley Park Hospital without a diagnosis and now here we were, just five weeks later, and she had just died.

Coroner’s Involvement

On Monday 22^nd March 2021, I called the hospital’s Bereavement Office to raise my concerns.  The following day, I was informed that Jackie’s death had been referred to the Coroner.

I contacted the Coroner’s Office and told them everything that had happened and shared my concerns.  The Coroner requested a post-mortem and about three months later, I received the interim cause of death:

1A – Recurrent biliary sepsis and acute kidney injury

1B – Common bile duct compression

1C – Para-duodenal nodal mass involved by diffuse large B-cell lymphoma (stage 4S disease)

While I was awaiting the outcome of the Coroner’s investigation and whether an inquest would be opened or not, I started researching sepsis, acute kidney injury, lymphoma, NICE guidelines, NHS frameworks, etc.  I was desperate for answers.

Formal complaint to Frimley Health Foundation Trust and declaration of a serious incident

During my research, I came across AvMA.  I called AvMA’s helpline as I had been drafting a complaint to the Trust but had not completed it pending the Coroner’s decision.  I was reminded that there is a time limit on submitting complaints and I was advised to submit it.

I submitted my complaint to the Trust on the 27^th August 2021. During a call with the Trust, I discovered that the hospitals did not share medical records – I had assumed they did as both hospitals are part of the same Trust.  This information really upset me, and I became even more concerned.  I raised a number of additional questions to those within my complaint and one of these was “On what date and at what time did Wexham start treating Jacqueline for sepsis?”

In September 2021, a decision was taken to open an Inquest.  The full Inquest was scheduled to take place on the 16^th February 2022.

There were delays by the Trust in fully responding to my complaint and then a decision my complaint required a patient safety review with the Trust which resulted in declaring a Serious Incident being declared into Jackie’s care.

The significant delay to declare a Serious Incident resulted in the inquest being delayed until the 30^th June/1^st July 2022.  I was devastated.

The Trust failed to meet the timeline to prepare the report which resulted in the inquest being rescheduled a second time to the 20^th/21^st October 2022.  The continual delays by the Trust were very distressing and added to, what already was, a very stressful situation.

On the 6^th July 2022, I was invited to a meeting with the Chair of the Review Panel to provide me with the clinical findings of the Trust’s investigation.  During the meeting, I heard there had been a catalogue of errors with Jackie’s care.  They failed to initially diagnose sepsis in A&E and when they did, there was a delay in treatment as the charts had been incorrectly completed.  They failed to provide appropriate treatment for acute kidney injury.  They failed to monitor Jackie correctly and on at least two occasions, did not activate a NEWS call, one when she was NEWS8, and there were numerous incidents of poor completion of records and a lack of documentation.

I had also raised questions about the Trust’s policies and processes which had completely failed, and I had to wait a further seven weeks before I received the Trust’s response. Within the response, there was reference to an incident report submitted two days after Jackie died by the ITU Consultant who had had concerns about Jackie’s care. This was the first time I had been made aware of this.  By failing to provide me with this significant piece of information, I felt the Trust had not only failed Jackie, but they had also failed me.  I felt unable to trust the Trust any more.

I requested a copy of the draft response to my complaint, and it was clear that the Trust had known there had been a delay in the diagnosis and treatment of Jackie’s sepsis in September 2021 but did not inform me.

If AvMA had not advised me to submit my complaint, I am not sure that any of the findings would have come to light.  I believe that it is my complaint which led to questions being asked and a Serious Incident being declared.

The inquest concluded that sepsis had not played a part in Jackie’s death and that she died of natural causes (multiple organ failure and lymphoma which was said to have been very aggressive and fast growing).

People ask me if, in hindsight, would I do it again?  The answer is yes, because I kept my promise to Jackie, and I truly believe I did everything I could.   In her summing up, the Coroner referred to me as having gone through Jackie’s medical records with a forensic approach and said that I had been Jackie’s champion throughout.  I can only hope that the actions from the lessons learned will be implemented by the Trust, so that other patients and families do not have to go through what my family has been through.