Jasmine’s Story

Our little girl, Jasmine Elizabeth Ann Hughes, died on 15th February 2011. She was 20 months old.

Jasmine was the centre of our world, a very funny, very feisty, very pretty little flower!

At Christmas 2010 she got a virus. She got ‘better’ but wasn’t herself afterwards. Just over a month later, after many missed opportunities to listen to our concerns and act, a great number of breakdowns in communication within the NHS teams looking after her, a lack of attention to some of her basic observations, and a failure to adhere to safety guidelines by those responsible for administering her treatment, she died.

Jasmine had developed an illness called Acute Disseminated Encephalomyelitis, ‘ADEM’, a rare reaction to a common, in Jasmine’s case ‘cough and cold’ virus that caused inflammation within her brain. This is usually investigated as a matter of urgency, treated promptly and safely with steroids by experienced teams if the child is contnuing to get worse, and thankfully, the mortality rate for this illness is extremely low. 

Jasmine received neither urgent investigation, prompt treatment, or safe treatment by an experienced team. I hope reading her story will inspire healthcare providers to think about wether something like this could happen where they work and seek to do something about that, and inspire parents to speak up about concerns they have or feelings that things just aren’t right.

This is our story..

I took Jasmine to see our GP in Hitchin on 13th January because she had not been herself since getting over a virus. She was clingy,  wanting to be carried, not eating very much and more tired than usual. She didn’t seem enthused by her playgroups and activities which had just restarted after the Christmas break. She had also developed a barely there, off and on’ lazy’ eye, but I wondered if that could be a seperate issues and inherited from her Daddy who had eye patches to correct a squint as a child.

Jasmine’s GP , Dr Helen Davies, was fantastic. She listened to my concerns, and in her own words felt Jasmine was probably ‘just a bit post viral’ until I mentioned the recent onset of the lazy eye. She also noticed that when Jasmine went over to a toy box in the room she walked with a wide based gait. She asked me how long Jasmine had been walking for and when she found out Jasmine was an experienced walker we discussed how she was walking today and both agreed the walk was unusual. Dr Davies instantly recognised Jasmine might be suffering from a post viral neurological condition, and phoned the Lister Hospital, Stevenage to make an immediate referral to the paediatric team.

That evening, at the Lister Hospital, Jasmine was seen first by a nurse, then by a junior doctor , Dr Dayha, who recorded ‘Post Viral Ataxia’ which means abnormal walking following a virus. The specialist registrar , Dr Mei Ling Wong, then spent time really listening to me, and concluded the clear history I gave was worrying. She informed me that a neurological problem was suspected, and the first action to be taken was Jasmine must be admitted for neurological observations, basic observations including close monitoring of blood pressure and temperature, undergo a brain scan to rule out a tumour, and have a review of her eye by an ophthalmologist to determine if there was a neurological cause for this. I was naturally very upset by the news but happy with the plan.

The next day, a locum doctor did not perceive Jasmine’s symptoms to be as concerning as myself and previous doctors. An urgent CT scan that day was not in his opinion necessary. An MRI brain scan was scheduled for the 20th January, a wait of 6 days.

I was upset by the change of plan and said I would like an earlier scan as per the previous plan to find out what was going on, but was told this was not possible as there was only one children’s MRI clinic per week available, and not at this hospital, but another one, the QE2 in Welwyn Garden City. I said I had private medical insurance and was prepared to pay privately for an earlier scan, but again was told private or NHS, an earlier scan just would not be possible.

During Jasmines admission she spent a lot of her time on the bed, having cuddles, being read stories, having snoozes, generally being quite quiet. I noticed her blood pressure measurements were consistently high, and raised a concern about this but was told that it was likely to be simply because Jasmine did not like having her observations taken and I needn’t worry. I did not know that these Blood pressure measurements were highlighted to Doctors as ‘elevated’ by the nursing teams but not acted upon and investigated.

On the 15th January Jasmine did some short walks with a pram from the ward toy room to her bed. Perhaps the pram gave her more stability, who knows? I was encouraged that she had got off the bed and had a period of being interested in play, and in conversation with the nurses said she seemed a little better in herself. Despite still having abnormal blood pressure observations and having not yet had any tests or investigations Jasmine was recorded as ‘improving’ by the doctors and nurses.

On the 16th January, whilst still in Lister hospital, Jasmine had an isolated vomit. She did not want to do any playing and was tired. A different locum consultant to yesterdays on a ward round was unable to assess Jasmine as she was sleeping, but suggested she be sent home anyway as she had  ‘improved’ and a plan was in place to have the scan the following week ‘just to make sure’ The high blood pressure readings were ignored, and an appointment for an eye review was not made.

At this stage, since the doctors and nurses were not worried I was falsely reassured and happy to take her home. I was not aware of any significance of the blood pressure readings as I had been told this was nothing. I was concerned about Jasmines lazy eye but was told by the locum consultant she thought it was just ‘an innocent squint’, she also suggested Jasmines hips might be sore following the virus as an explanation for her igait and intermittent reluctance to walk. I was not given any advice about worrying signs or symptoms to look out for.

Before we left I asked who was in charge of Jasmines care and was given the name of a consultant, Dr Chawla. She had not seen Jasmine once, (and never did).

After four days at home, on 20th January Jasmine had her MRI scan at the QE2 Hospital in Welwyn Garden City, . I was naturally concerned and asked the team who performed it to tell me if they had seen anything abnormal. The team would not tell me anything and said I would have to wait for the report to be sent to Dr Chawla, the referring clinician, who would contact me, which routinely could take up to two weeks. 

I was annoyed that nobody would tell me anything, but assumed there could not have been anything found on the scan if Jasmine was being sent home so readily to wait for a phonecall sometime over the next two weeks.

However,  just in case, I booked the earliest available private appointment, funded by our medical insurance with Dr Chawla. This was 24th January, and I requested the secretary making the booking inform Dr Chawla that I would want to review the scan results during the appointment, so she would chase them before we met.

Over the next two days whilst back at home I felt Jasmines squint was becoming more obvious, but since I had been told when we were sent home from the Lister hospital that this was probably ‘innocent’ and had not been contacted by anybody to say there was anything on the brain scan, I continued assuming it was probably not serious and something similar to what Daddy had corrected as a child.

However, Jasmine then developed tremors and shaky movements, and she seemed even more tired. Despite having an appointment for the Monday afternoon with Dr Chawla, I took Jasmine back to the Lister Hospital A&E department on Sunday 23rd January over concerns that her symptoms were getting worse.

(Since Jasmine’s death it has been discovered that the MRI was ‘very abnormal’ and the report was given to the Lister Hospital team on the 21st January, describing worrying changes. The clinicians who read the report could not find Jasmines medical notes from her previous admission to read the history, because they were still over at the QE2. Instead of taking action anyway and phoning us to bring Jasmine in for a review, they appear to have prioritised waiting to read the notes. Something then went wrong with communications, as the notes were never sought and we were never contacted.)

In A&E thankfully the same registrar responsible for admitting Jasmine previously, Dr Mei ling Wong,  saw Jasmine again. This continuity of care meant that she recognised Jasmines symptom progression over time. She then found the MRI report in the notes and told us the MRI scan was reported by a radiologist , that there was breakdown of the white matter in Jasmines brain, and two potential causes has been suggested by the radiologist.  ‘post viral encephalomyelitis’ (which is another phrase for ADEM) which was treatable she told us, or  Leukodystrophy, a rare genetic disorder, which she told us was not treatable, but we shouldn’t start worrying about that, as it was more likley given the history Jasmine had the post viral illness. 

Dr Wong told me the diagnosis was not yet certain, so the plan was to start Jasmine on IV antiviral and antibiotic medications immediately, just to cover for any possible on-going infection, perform a Lumbar Puncture procedure, to test Jasmines spinal fluid to help confirm the diagnosis, and to telephone Great Ormond Street neurology unit asap for advice and possible transfer for a review.

Whilst devastated by the news, I was happy with the plan to immediately commence some treatment and carry out the tests needed to help get a firmer diagnosis.

Dr Wong then handed over to another doctor, as she had reached the end of her shift.

It was this new doctor, Dr Bhatia,  who liaised with the Great ormond Street neurology unit via telephone. They suggested it was unlikely, as Jasmine was not feverish, that she had an ‘on-going’ infection, and that the infective cover medications due to be started were not required. Jasmines medical notes record that  Great ormond Street said that steroids (the treatment for ADEM) were likely to be beneficial instead, but not to commence Jasmine on these just yet, or perform the Lumbar puncture until they had a chance to review the scan images. They asked the lister Hospital doctor to fax over a letter outlining Jasmines history and current presentation so they could review her clinical symptoms alongside the scan pictures.

I was told the plans had changed, and Jasmine was not to have IV treatment of any kind or the Lumbar Puncture until after Great Ormond Street looked at the scan pictures. I wasn’t told that Jasmine most probably needed steroids, but they weren’t being started until after the MRI review.. Naturally I was very upset by the u-turn in the plan, but thought if that was the advice from ‘neurology experts’ it must be ok. Jasmine would be admitted to the ward at Lister hospital for observations and no other action was to be taken until Great ormond Street gave specialist advice about how to proceed after their review of the scan.

The next day a registrar and Dr Raffles, a paediatric consultant saw Jasmine. She still had high blood pressure but this was not picked up. Despite us having come into A&E because Jasmine was getting worse, they recorded that there had been no deterioration since the previous admission. (Given that I was not permitted to read the medical records I couldn’t pick up these mistakes that were happening with infomration about Jasmines presentation and progression) They simply recorded that Jasmine was awaiting an opinion from the neurology unit. Dr Raffles told me given the history he thought it was likely she had a post viral illness and I shouldn’t scare myself by looking up information about leukodystrophy.

Later on 24th January Dr Raffles told me the opinion from the neurology unit (who hadn’t seen Jasmine) was that her illness was most likely neuro metabolic in origin. I knew this meant that a Leukodystrophy was being considered as the more likely diagnosis. This was a huge shock as up until now, the Lister Hospital doctors had all thought that given the history she more likely had a post viral illness that could be treated.

I was under the impression the Great Ormond Street neurology unit could tell this was more likely a leukodystrophy from their review of the scan pictures. With the infomration I had been given, this was an obvious conclusion to make. I was devastated and terrified, as I knew there was no treatment and that this was a terminal, degenerative illness.

(The inquest into Jasmines death uncovered that the Great ormond Street neurology department reviewed the MRI scan pictures alongside the letter about her history and symptoms they had asked the doctor who phoned them to send. This letter was not accurate, and suggested Jasmine was stable and improving. There was no mention of our parental concern over her worsening symptoms, and no attention was brought to Jasmines continued high blood pressure. The letter stated we had been called at home following getting the MRI report to bring Jasmine in, when in fact we’d not been called at all and  had come in via A&E concerned. This gross inaccurancy didn’t convey any parental anxiety, or that Jasmine was getting worse, to the Great ormond Street team . there was no information in the letter about her not being motivated to play or her excessive tiredness. It merely mentioned her abnormal walk and eye. The full, and relevant, history we had given was ‘lost’ This misinformation appears to have heavily influenced the opinion of the neurology team as their notes state “not encephalopathic, therefore more likely neuro metabolic in origin” The actual report of the scan produced two days later at Great Ormond Street stated that it was not typical of any neuro metabolic illness. However the Lister team had already been advised GOSH felt this was more likley neuro metabolic )

There now arose a situation whereby the Great Ormond Street neurology unit had received information about Jasmine which they did not know was inaccurate, they had not seen Jasmine or spoken to us, they had made an assumption about the most likely diagnosis based on the information they had received, which was not fully supported by what they were seeing on the scan pictures, and had passed this down as a ‘specialist opinion’ to the referring team at Lister Hospital. The referring team had accepted the opinion, without question; despite up to that point believing Jasmine was suffering from a post viral illness, and passed that expert opinion onto us. And we believed the Great Ormond Street neurology team had the right information when they made their assumptive diagnosis.

We were then told that an urgent appointment would be made at the Great Ormond Street neurology unit for her to go there as an outpatient for tests which would reveal exactly what was going on. Additional tests to look for leukodystrophy features, in addition to the previously planned Lumbar Puncture. We were told we should take Jasmine home, despite her worsening symptoms (and her raised blood pressure that continued to go unnoticed), still having received no actual tests or treatment, and wait to be told when to go to the neurology unit. I was very worried, but Dr Raffles told me he expected it to be the next day, or the day after that, a rapid assessment.

The next morning I was phoned at home by the Lister hospital team and  told an appointment was made for the following day, 26th January. The Great ormond street neurology unit then called and delayed the appointment until the 31st January, the following week! I was again, not happy with the sudden change of plan, and expressed concern over the delay, but the plan was not altered.

Investigations since Jasmines death show that due to a lack of awareness that Jasmines symptoms were worsening and due to the incomplete history, the Great ormond Street neurology department did not recognise any urgency, and had delayed the appointment so that all the tests they planned could be conducted on the same visit. They were not willing to take much notice of my desire for an early appointment , because they had not received any sense of urgency from the referring clinicians. It was also revealed after Jasmine died that the Great ormond Street neurology unit clinician making decisions about her was unaware Jasmine was at home, believeing she had remained an inpatient at the Lister hospital under observation. Great ormond Street have told us they would unlikely have delayed the appointment if they had the full picture.

Whilst at home I read up about Leukodystrophy. Whilst some of Jasmines symptoms were within the descriptions I read, I felt Jasmines symptoms were getting worse more quickly than would be expected for a child with this condition. Sadly, I had not been told anything about the alternative diagnosis, the phrase used with me was always just ‘it could be post viral’ . It would have been useful to me to read about both ADEM and Leukodystrophy at this time. In hindsight, I feel had this occurred, I would have had an opportunity to inform the medics that Jasmines symptoms, in my view,  fit the ADEM profile better.

On 27th January Jasmine finaly had her eye assessment, but at another local hospital, Hertford this time, and the ophthalmologist commented that he thought what he was seeing was a consequence of her virus. Jasmines GP also visited, and said she was a little concerned about the wait for the neurology review and she would call the Great ormond Street unit. Sadly the unit still did not change their plans despite her call.

That evening I took Jasmine back to the Lister hospital and explained that I was worried Jasmines symptoms were continuing to get worse at home whilst waiting for the neurology review at GOSH.. Sadly, the doctor I saw had no previous notes to refer to (this time they were at Hertford where she had her eye looked at) and asked me for the history to date. I explained this had all happened since a virus so I wasn’t convinced the more likely diagnosis of a neuro metabolic illness given by Great Ormond Street was correct, , I felt Jasmine’s progression was faster than would be expected for Leukodystrophy. I said it didn’t make sense to me to be sitting at home with no tests or treatment unless someone actually ‘knew’ Jasmine had something that couldn’t be treated. I asked if someone was not telling me something that would explain why Jasmine kept being sent home. To my utter distress, the doctor told me that the virus could be a red herring, that the Great Ormond Street neurology unit felt Jasmine had a leukodystrophy, that sometimes viruses could speed up leukodystrophy which might explain why it appeared to all be happening since the virus, and simply to stick to the plan. He said it was terribly sad and he was terribly sorry. He recommended a prescription of diazepam to calm my anxiety. I believed he had contacted Great Ormond Street, but he did not  The GOSH neurology unit remained unaware, still, of Jasmine’s symptom progression and our parental anxiety over her deterioration. During this assessment Jasmines blood pressure was still high, but again, this was ignored.

The notes show that the consultant, Dr Raffles,  was informed the next morning that Jasmine had presented to A&E again with parental concern over worsening symptoms, and he too suggested the plan as it was just continued. There was no attention paid to my concerns whatsoever.

Having been sent away again, being told the virus may be a red herring, and that the neurology unit thought this was a leukodystrophy, I started to believe this must be true. I honestly felt “surely they wouldn’t keep sending us away unless they are sure it’s a leukodystrophy, and not something they should be getting on and treating to make Jasmine better” I went through hell, thinking about how I would be able to make Jasmine happy as she slowly lost her senses before eventually losing her life. I was terrified .

Jeff and I chatted about what we might of missed. Were they any signs of leaukodystrophy style symptoms before Jasmine got the virus. We talked about Jasmine having been a bit reluctant to walk up the stairs herself. She would sit on the bottom and put her arms up to be carried. This had happened a few times before she got the virus. Was it something we missed? Was her vision playing tricks on her then, so she couldn’t make sense of the stairs? Is that what had been going on, rather than her just messing about? 

On the 31st January, at the Great Ormond Street neurology unit assessment, we were seen by a registrar, who asked us for the history. We gave it to her. It sticks in my mind that she wrote her notes on a laptop computer as we spoke. We told her we were now starting to wonder if there may have been a  sign something might be wrong before the virus, and mentioned the stairs. She seemed very interested in this and asked specifically when we thought that may have started and we said ‘around November’  (This is significant, as the notes she typed say ‘all started with difficulty going up the stairs late November’ This was not the history we had given, but it was the way she recorded our conversation) 

When we eventually saw Dr Cheryl Hemingway, she told us that the MRI was not typical for a leukodystrophy. We told her we were angry to hear this, we had been told at Lister hospital the MRI was considered ‘most likley’ to be a leukodystrophy. She told us Jasmines history wasn’t typical for a post viral illness. We didn’t question her as to why that was. If we had, we could probably have corrected her assumptions. (We now know, the history she was referring to, was her misinformed view that ‘this started in November with the stairs, that she had been given by her colleague who took the history from us, and also from the referral letter from lister which suggested she was stable and not encephalopathic)

Dr Hemingway said Jasmine might have a post viral illness, or a leukodystrophy, but it was not clear which. I was furious since this level of information had been available on 21st January as a result of the MRI scan, 10 days earlier. There had been no progress in attempts to find out what this was and care for Jasmine for 10 days, despite her symptoms getting worse. Dr Hemingway then proposed another MRI scan and a lumbar puncture. This made sense until she suggested these tests be undertaken in a further 4 weeks time!

I explained I was concerned about Jasmine’s worsening symptoms, and  that since 13 Jan I had been in to Lister Hospital 3 times because Jasmine was getting worse and each time plans were made to do tests and start treatment and then cancelled and I couldn’t bare to be sent away with no action yet again. I said I  wanted the tests done now, as our appointment letter set out they were to be. Dr Hemngway asked me to show her the letter. It clearly stated Jasmine was there for a review and a Lumbar Puncture. .

Dr Hemingway agreed to perform a Lumbar puncture but a further MRI was declined. I remember clearly her saying to the registrar ‘”Let’s do the LP, in case we are msising something and steroids might help'” As it was late in the day, we were told to take Jasmine all the way home again, and make the same journey back tomorrow for the Lumbar puncture. There is no evidence in the notes of any basic observations being taken during this two day outpatient assessment at the Great Ormond Street neurology unit, so again, any high blood pressure went unoticed.

Following the Lumbar Puncture procedure on 1st February Jasmine was again sent home, this time by Great Ormond Street neurology experts, to await tests results. I raised concerns again that the plan not to admit her and try to treat her didn’t make sense to me, and again questioned if there was something I was not being told. I was sure the doctors were somehow still more confident this was a leukodystrophy than they were telling me, otherwise I couldn’t understand why we were being sent home.  I was assured the best course of action was for Jasmine to be at home in her own environment whilst ‘no active care’ was being undertaken. I expressed concern that I kept taking Jasmine to the local hospital due to progressing symptoms, but that nothing was happening.

The neurology team advised me to take Jasmine to hospital if I  felt her breathing deteriorated or she developed swallowing difficulties. Otherwise she was better off at home for now.

Three days later I was still worried but Jasmine had not developed any breathing or swallowing problems. She was needing a lot more sleep and her symptoms were not improving. I asked our GP to visit. It was now the 4th February, over three weeks since the GP had first referred Jasmine to hospital. She was alarmed at Jasmines presentation, and called the Great ormond Street neurology unit and was informed the Lumbar Puncture results were available and the advice was Jasmine should be treated with steroids. The Lister hospital had apparently been informed of this the previous day (We had not been contacted, again) 

The plan was made for Jasmine to attend the Lister Hospital for treatment with high dose intravenous Methylprednisolone. Jasmine was given the first dose of steroid at 5:15pm that Friday evening, but sadly, by staff inexperienced in giving steroids for neurological illnesses, and instructions for giving the medication safely including very close monitoring of blood pressure were not followed. No neurological observations, or blood pressure monitoring, were carried out at all.

We now know that the steroid was indeed te right chice of medication to treat Jasmines ADEM, but that it was a ‘use with caution’ drug for patients with high blood pressure. All of Jasmines BP readings had been high, she was actually in the Grade 2 Hypertensive category. These patients should ideally have their BP lowered before being given steroids, as a minimum their BP should be monitored very closely during the administration and afterwards. If the BP starts to rise, this needs to be managed promptly with antihypertensive medications. 

Despite my concerns about Jasmines very alarming symptoms following being given the drug, which included vomiting almost immediately, becoming pale and clammy, becoming increasingly agitated and distressed, and developing a strange looking face, and my repeated requests for her to be reviewed by a senior doctor and given something to ease her distress, Jasmines blood pressure was never checked, and neurological observations were not undertaken, not once. Instead I was falseley reassured by nurses and a very junior doctor that this was an expected ‘hyperactivity’ style reaction to the medication. I asked for pain relief and sedation for the ‘hyperativity’ which was clearly causing Jasmine extreme distress. Jasmine had to wait a very long time to be assessed by a senior doctor. In the early hours of 5th February Jasmine developed seizures which were terrifying and traumatising for us to witness. 12 hours after being given the drug, and after suffering from distress for many hours, her neurological status and blood pressure was finally paid attention to. It was noted that Jasmines blood pressure was now very high. I clearly remember seeing a systolic BP of 202!

Due to the obvious panic of all the staff, who were now, finally alert to Jasmines deterioration, and the fact that Jasmines cannula had been removed (she had been thrashing her arms so much it had become dislodged) only minutes before we demanded Jasmine be reviewed by a senior doctor and she was discovered to be seizing,  there was a significant delay in Jasmine being given medication to try and stop her seizing, and she developed status epilipticus, seizures that were really difficult to control. Jasmine had to be put onto life support, a CT scan was carried out, and she was transferred to Great ormond Street Intensive Care. The Lister hospital consultant and the CATs transfer team, both recorded that they suspected Jasmine was suffering from Hypertensive Encephalopathy with partial/Generalised seizures. The Ambulance Transfer Team gave ?Methyl Prednisolone Induced Hypertensive Encephalopathy as part of their handover information

No information about how the medication had been given, without following safety guidelines, was passed on to the Intensive Care team. It is also clear from the statement provided to the coroner, that the receiving Intensive Care doctor, Dr Paula Lister had misread an observation chart, and had thought Jasmines Blood pressure had been appropriately checked throughout the methylprednisolone infusion and afterwards,  and had been relatively stable. It had not.

The handover diagnosis of a potential MP induced hypertensive encephalopathy was therefore  rejected by the intensive care team,  They seem to have instead questioned wether an underlying infection had caused the alarming reaction to the steroids, but of course an infection was never found.

The intensive care team set Jasmines BP targets as those for a child with a normal BP history. This has come under very strong criticism by experts in paediatrics, BP, and Intensive Care as part of legal proceedings, with those experts identifying this as an inappropriate BP target for Jasmine that would have resulted in a lack of perfusion of her brain with oxygenated blood. She was kept at this target level for 11 hours, until the target was altered to more appropriate values. The experts identify Jasmine showed signs of having developed irreversible brain damage at that time, and suggest that oxygen starvation of her brain due to inadeqaute blood pressure during that 11 hours was a major contributor to her fatal brain injury, without which she would have survived.

At the time, we knew nothing of this having happened, and there remains an unanswered question of who recognised the target was inappropriately low and changed it at the end of the 11 hour period. What we were told on 6th Feb, after this 11 hour period had already caused likely fatal damage, was that Jasmine was seriously ill, and if she ever woke up would be a very changed child.

Jasmine passed away on the 15th February 2011., 9 days later. It took until then for sedation medications given to stop her seizing (the same ones that caused the dangerous blood pressure drop) to wash out of her system sufficiently for accurate results from brain stem testing to be ascertained.

Neither Lister Hospital or Great Ormond Street recognised any need for an incident investigation to be undertaken into the events leading up to Jasmines death, despite us obtaining medical records, identifying communication issues and highlighting our concerns about miscommunications and assumptions and that the MP led to Hypertensive Encephalopathy. 

An inquest into Jasmines death, which relied only on the opinions of the clinicians involved (the coroner refused to request any independent opinion) concluded she died of ADEM which presented in an unusual way. 

We were traumatised by this verdict. It was clear to us that errors had occured, and Jasmines ADEM had been mismanaged. It’s presentation was not unusual, the treatment Jasmine received was severely delayed, and then when it was eventually offered, was given unsafely and led to Jasmine’s brain being subject to additional sources of harm, not ADEM alone. Without identifying the additional causes of harm (Hypertensive Encephalopathy and 11 hours of inadequate BP after that) that had contributed to the clinical picture, the truth about what happened and the learning needed was missed.

It was only after the inquest that our legal proceedings resulted in independent review of the evidence by medical experts instruced by our solicitors. Click here to read the expert report of Dr Malcolm Coulthard into Jasmines care.

The experts concluded that Jasmine’s treatment with steroids was severely delayed because of the miscommunications and delays that occured up until the point GOSH told Lister hospital to commence treatment, but, in their view, SAFE treatment with steroids even at that point of time would, very likely, have avoided Jasmines death. Jasmine died because due to the lack of BP monitoring and her previous hypertension putting her in a ‘caution’ category she was given the steroids unsafely, and this led to her unexpectedly developing the complication Hypertensive Encephalopathy. On transfer to Great Ormond Street ICU, this Hypertensive Encephalopathy was mismanaged, by dropping her BP too fast and too low given the BP history, and resulting in a lack of oxygen to the brain for 11 hours. It was this additional blow, on top of having had ADEM left progressing for 3 weeks,  that Jasmine was unable to survive.

In November 2017, over 6 and a half years after Jasmine died, Great Ormond Street and Lister Hospital settled our Clinical Negligence claim for compensation. They chose to do so without providing any infomormation to us about the basis for this decision, so there was none of the  acknowledgement we sought for Jasmine that any of the poor care she received had contributed to her death. We found it cruel to ‘pay money’ to make us go away and refuse to give us what it was so clear we desperately wanted for our child. 

The legal process was a distressing and frustrating process, it seemed deny delay and defend tactics were used until the trusts finally settled. The process didn’t result in any meaningful investigation of what happened, any apology, and failed to ensure much needed learning about paying attention to BP when making these kinds of diagnoses, giving MP, and the correct management of suspected Hypertensive Encephalopathy would be shared. The legal process hindered all other opportunities for the learning to be identified and shared.  

There had been a Root Cause Analysis investigation undertaken jointly by both trusts but this only occurred after the inquest (they didn’t identify any requirement for one in the 14mnths prior to the inquest which I find astounding) The RCA team used the inquest findings to determine the terms of reference. They would not thoroughly investigate the effect of BP and the unsafe administration of MP, and no issues with the BP targets on arrival at PICU were identified or reviewed. As a result, the RCA fell very short of the quality of investigation required for all the necessary learning to be established. 

However, I am sharing their learning outcomes from those issues they did agree to look at here, as there are many important recommendations particularly around communication between teams and organisations that should be widely considered.

I hope that one day there will be an independent, thorough inquiry into Jasmines care and a set of recommendations produced, acknowledging the failures around BP, in the future. I am actively working towards achieving this, alongside using my story to raise awareness in the paediatric community of the need for more attentiveness to BP in children. 

 To read the NHS Learning Outcomes identified so far, please click here.

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