In October 2021, a “Level 2 Serious Incident Investigation” led by pathologist Dr Peter Southall found Health and Care Jersey responsible for “many significant failings” in the management of a female Islander under their care.
Spanning eight months between first referral on 16 July 2019 and discharge on 25 March 2020, the 68-page report seen by the JEP uncovered a catastrophic series of mistakes emanating from “chaotic handovers,” “unexplained cancellations,” “system failures,” and “unacceptably long” waiting times.
The subject of the report – a formerly “fit and healthy” 49-year-old mother-of-two referred to here as ‘Emily’ – was first admitted to Jersey General Hospital with symptoms of dizziness, numbness, and a sudden loss of coordination.
However, “dysfunctional team working” and a “lack of attention” meant she was prematurely transferred from the hospital to a “rehabilitation” ward, despite no “firm diagnosis” and mounting evidence of severe neurological deterioration.
During her three months in the Samares Ward at Overdale, Emily “languished” with neither clinical support nor proper neurological assessment; the report finding evidence of insufficient medical clerking, inaccurate note-taking, and false statements about onward referral to Queen’s Hospital in London.
A referral to the specialist neurology hospital was only made, the family said, following the then-consultant neurologist being “dragged” to her bedside to perceive Emily’s “obvious” deterioration firsthand.
After just one day at the specialist Queen’s Hospital, she was correctly diagnosed by clinical neurologist Professor Mary Reilly as suffering from “paraneoplastic cerebellar syndrome” resulting from undetected breast cancer.
Then, on 13 March 2020, Emily was transferred back to Jersey “for further care with a particular focus on physiotherapy and speech therapy.”
But now – six years after her return – Emily’s family is speaking out to say that the Health Department has not even been “willing to try” putting into place the recommendations explicitly made by experts at Queen’s Hospital.
Instead, they say, the Island’s healthcare system is “back to square one” and unwilling to facilitate the intensive physiotherapy required to help improve their loved one’s state of ill-health – a state that, it is suggested, might have been mitigated had the correct diagnosis not been stalled for so long.
“We were waiting for this neurology appointment that never came”
Emily first attended her GP on 16 July 2019 with pain in her lower back and right leg – the discomfort causing her to wake frequently throughout the night.
“I remember her not being well that summer,” her mother-in-law recalled over a cup of tea. “It was my son’s 50th birthday party and she went home early, and she was always the last to leave.”
She was referred to the Spinal Assessment Surgery, but “for reasons unknown,” the report states, the referral letter was not received.
The report says: “This failure in the referral resulted in her not being seen until November 2019, by which time the symptoms and neurological abnormalities had progressed.
“This is a systems failure in the referral process from Primary Care to Secondary Care services.”
Emily’s partner, speaking over the phone over half-a-decade later, remembers the frustration clearly.
“From the very beginning she was getting worse and worse, and we were waiting for this neurology appointment that never came, because the actual GPs messed up and didn’t contact them to make the appointment.”
The family even tried sourcing an outpatient appointment with the Neurology Department specifically, but were met with dead-end after dead-end.
A GP referral on 17 September scheduled in a follow-up appointment for 11 weeks later – an “unacceptably long” time, the report notes.
When her case was upgraded to “urgent,” she was informed that an appointment would be forthcoming should a “cancellation” arise, but it never did.
Dr Peter Southall observed in his report that such an “unhelpful response” only “compounded” the issue.
Her failure to be seen by a single neurology specialist throughout this period was therefore identified as a lost opportunity “for an early clinical assessment and management plan.”
Emily’s partner remains exasperated at how “impossible” it proved to impress the gravity of the situation upon medical professionals across the Island.
In the end, the family was forced to rely on the expertise of a trainee GP during one of several “desperate” visits to A and E.
“He said ‘oh maybe you just need to go in a field and have a good scream’ – and basically they just sent us home, and the next day she couldn’t even stand up.”
“How can you put someone in for rehab when you haven’t even diagnosed what’s wrong with her?”
After more delays, Emily was eventually admitted to the Corbiere Ward – for acute patients – on 27 November 2019, where an “appropriate management plan” was agreed following a provisional diagnosis of a rare autoimmune disorder called Chronic Inflammatory Demyelinating Polyradiculoneuropathy.
However, during her 16 days on the ward, neither the consultant neurologist nor the associate specialist once attended to her – despite concerns about Emily’s worsening symptoms being raised by both the patient and her family.
Inexplicably, the family argues, she was later declared “medically fit for transfer” to the rehabilitative Samares Ward on 10 December during a handover between two medical teams.
This was in spite of one doctor “correctly” noting that Emily needed to stay in the acute ward for ongoing assessment in light of no “firm diagnosis,” with a referral to Queen’s Square in London slated as a viable option for future care.
During a subsequent interview, the consultant neurologist responsible for overseeing Emily’s care claimed to “not recall” a discussion with the charge nurse in which he signed off on the transfer.
Crucially, the transfer meant the referral to Queen’s Hospital was postponed indefinitely, and an antibody test that might have helped diagnose the paraneoplastic syndrome was not done.
The report states: “The failure to perform tests, either on Corbiere Ward or Samares Ward, was a root cause that almost certainly contributed to the final diagnosis not being made in Jersey.
“Had the tests been undertaken, the specific auto-antibodies would very likely have been identified by the Birmingham Laboratory with an expected turnaround time of seven days.
“Further targeted investigations for breast malignancy, that could have been performed locally would have then identified the breast cancer as the cause of the paraneoplastic degeneration and peripheral neuropathy.
“This behaviour demonstrates dysfunctional team working that severely compromised [her] care.”
Emily’s partner echoed the findings of the report: “We’ll never know that if they would have been more on the ball in the start [whether] she would be in a better condition now than what she is.
“Nobody can ever know that, but it’s always going to be playing on your mind.
“If they’d listened to us in the first place, at least we’d know we did things as quick as we could, whereas they were faffing around for over a month before they actually did anything positive, and that was only for me being forceful.”
Eventually, he said, he took matters into his own hands and forced the consultant neurologist to re-evaluate his decision to have Emily stay in the rehabilitation ward.
“I practically dragged him into the room, I said ‘look at the difference from when you’ve last seen her’ and he went white, and then he jumped into gear and flew her to England.
“But, how can you put someone in for rehab when you haven’t even diagnosed what’s wrong with her?”
“You never meet anybody that would ever say anything but how wonderful she is”
Speaking to the JEP, Emily’s mother-in-law said their “special” family member continues to inspire them all in the wake of her diagnosis from Queen’s Square.
“She’s as alert as you and me, her memory is unbelievable, she remembers stuff I forget.
“She’s been ill for six years, and every week without fail her friends tip up and take her out.
“How many people would do that for six years? She’s got to be a special person, and she is a special person. She’s a special person to us and she is to all her friends.
“You never meet anybody that would ever say anything but how wonderful she is,” she explained.
But the shape of their family unit, she acknowledged, has been irrevocably changed by an illness she believes to have been avoidable.
“All six years she sleeps in a room downstairs, in her lounge, with her wardrobe there and everything.
“They haven’t even got a proper home anymore – [her partner] keeps it nice, but at the end of the day their lounge is one big hospital ward,” she said.
The family, while harbouring deep frustration with the “lack of care” given to Emily across the board, have since turned their attention to the “appalling” lack of physiotherapy and speech therapy she has received.
They feel as if their loved one has been made to feel like a “lost cause” by the Jersey healthcare system.
Her partner said: “She had to go up to Les Quennevais yesterday and see the physio department, and the physio said to her ‘we’re not going to do anything, because you’re not going to get better,’ and that really sort of upset her yesterday.
“[Queen’s Square said] the things that can make life easier and make things better is physiotherapy and speech therapy and she needs it intensely when she gets back to Jersey.
“I said ‘can you relay that to Jersey?’, and they did relay it to Jersey, and we never, ever got it, and we’ve asked multiple times, but they always say it’s not worth it.
“They haven’t even tried. They’ve done assessments, they’ve said pick up this cup and do this and do that, and they’ve gone, well, if she can’t do that now then it’s not worth trying anymore.”
He added: “[The health department’s] idea of physiotherapy is to write a note out with some exercises on it and say, ‘right, do those exercises at home’.
“It’s not doing anything, she needs, like [Queen’s Square] said, intense physiotherapy, she needs to work at it.
“You need someone there who knows what they’re doing, and knows the case, who is a professional at their job to do it.”
Emily, her partner insists, continues to show signs of improvement – but needs a focused, not piecemeal, regimen of physiotherapy to help her progress.
His proposal is for intensive physiotherapy “at least twice a week to start with, and get her built up again and get her moving.”
“That would be the ideal thing – to get her moving more, just to see if things change, even just for her mental wellbeing, even just doing something,” he said.
“It seems to have gone round in circles and back to square one again anyway.”
Emily’s partner noted that Emily’s case triggered a host of “recommendations” being put in place across Jersey Health and Care.
It is also noted in the report that Professor Mary Reilly “did not think that if an earlier diagnosis had been made in Jersey that it would not have changed the final outcome”.
But for Emily’s family, they say the struggle securing proper physiotherapy points to a health system that does not serve its most vulnerable, tax-paying Islanders.
“I think a lot went on behind closed doors,” Emily’s partner stated. “I think they have used it to improve the Hospital, basically to improve the service, but it seems to have gone round in circles and back to square one again anyway.”
Responding to a request for comment, medical director for Health and Care Jersey Simon West said: “I’m always sorry to hear when a patient or their family feel that the care that they have received from Health and Care Jersey is not to the standard that they would expect.
“While I cannot comment on the specifics of an individual patient’s case, I would like to reassure Islanders that we investigated when the patient raised concerns about their care in 2020 and implemented changes to improve patient care going forwards.
“HCJ is currently reviewing the provision of Allied Health Professions, including the physiotherapy team, to identify opportunities to enhance and better integrate our services.
“We are also in the process of procuring and implementing a Shared Care Record which will bring together patients’ medical information into one secure place.
“The Shared Care Record, which will be accessible by GPs, hospital clinicians, community teams, and mental health and adult social care, will enable faster clinical decisions, fewer gaps in a patient’s medical history and less repetition for patients and families.
“Health and Care Jersey remains committed to learning from incidents and improving the delivery of care to Islanders. If the patient or their family would like to meet me to discuss their care further, I would be happy to meet with them.”
PALS provides confidential advice, support, and information on health-related services or care. To contact PALS call 443515 or email PALS@health.gov.je
