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 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.
Sadly, Jasmine received neither urgent investigation, prompt treatment, or safe treatment by an experienced team.
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 inherited from her Daddy who had patches 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 I 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. Inoticed 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. Blood pressure measurements were highlighted to Doctors by the nursing teams but not 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. 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 seemed to have ‘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 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 contacte 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 beofre 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.
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 told us the MRI scan was reported by a radiologist , that there was breakdown of the white matter in Jasmines brain, an 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 a post viral illness.
Dr Wong told me 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.
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.
This Wong then handed over to another doctor, as she had reached the end of her shift.
It was this new doctor 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 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 steroids were the likely treatment of choice once that happened. Naturally tI 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 Jsmine was getting worse, they recorded that there had been no deterioration since the previous admission. 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 likley 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 solely from the scan pictures. 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 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 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. to the Great ormond Street team The history we had given was ‘lost’ This misinformation appears to have heavily influenced the opinion of the neurology team as their actual report of the scan stated that it was not typical of any neuro metabolic illness.)
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 cause based on the information they had received, which was in contrast to 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 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 local hospital and explained that I was worried Jasmines symptoms were continuing to get worse at home whilst waiting for the neurology opinion. 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 neurology unit remained unaware, still, of Jasmine's symptom progression. 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 .
On the 31st January, at the Great Ormond Street neurology unit assessment, I was shocked to be informed that her scan had been reported as ‘not typical’ for a Leukodystrophy. I explained the information I had been given by Lister Hospital was that this Great ormond Street neurology unit felt this was the most likley diagnosis.
The neurology consultant, Dr Cheryl Hemingway, said Jasmine might have a post viral illness, or a leukodystrophy, but it was not clear which. I was furious since this 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. 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 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 deterioration, 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 (Jasmines parents 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 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 have their BP lowered before being given steroids, and their BP should be monitored very closely during the administration and afterwards. If the BP starts to rise acutely, this needs to be managed.
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, Jasmines blood pressure was never checked, and neurological observations were not undertaken, not once. 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. 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.
After seizing for almost two hours uncontrollably, 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 her signs, symptoms meant Jasmine could be suffering from Hypertensive Encephalopathy with partial/Generalised seizures. The Ambulance Transfer Team gave ?Methyl Prednisolone Induced Hypertensive Encephalopathy as their handover diagnosis.
No information about how the medication had been given, without following safety guidelines, appears to have been 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 hypertensive encephalopathy appars to have been 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 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.
The experts concluded that Jasmine died because she was left for far too long before she received any treatment for her ADEM, and that when given that treatment, due to her hypertension she was given it unsafely, and this led to her developing the complication Hypertensive Encephalopathy. On transfer to Great Ormond Street ICU, this Hypertensive Encephalopathy was mismanaged, resulting in a lack of oxygen to the brain , which made a significant contribution to her death.
In November 2017, over 6 and a half years after Jasmine died, Great Ormond Street and Lister Hospital chose to settle our Clinical Negligence claim for compensation as an out of court settlement.
The legal process was a distressing and frustrating process for me, it seemed to me deny delay and defend tactics were used until the trusts considered the risk of continuing in that way were too high and settled. he process didn't result in any actual investigation of what happened, acknowledgement, or much needed learning. The legal process hindered all other opportunities for the learning to take place.
Only now do I feel I can make a true difference by speaking out about what those experts say really happened to Jasmine, and campaigning to ensure neurological illnesses like ADEM are better understood by General Paediatricians, Communication between Healthcare professionals and with parents is improved, and BP is not overlooked when investigating and treating children.
A Root Cause Analysis investigation was undertaken by both trusts after the inquest (they didn't identify any requirement for one prior to the inquest which I find astounding) The RCA team would not fully investigate the effect of BP and the unsafe administration of MP, and no issues with the BP targets on arrival at PICU were ever identified by them. However, I am sharing their learning outcomes here, as there are many important recommendatiosn other trusts could learn from. I hope there will be a more robust analysis undertaken, and set of recommendations produced, in the future.
To read the NHS Learning Outcomes identified so far, please click here.