Married mother-of-four describes the hospital blunder that cost her job and health

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Janice Johnston typically took a shower totally clothed, in order that if she had the stroke she feared could also be imminent, her dignity can be preserved in entrance of her youngsters.

It was one among many determined changes she made as she tried to come back to phrases with having a life-threatening blood most cancers which additionally got here with a a lot increased danger of deadly blood clots and strokes.

‘For months, I actually thought I may drop down lifeless at any second,’ she says.

In a state of close to everlasting nervousness, the mother-of-four’s fears in regards to the future have been compounded by the truth that, as time went on, the oral chemotherapy medicine she had been instructed she would wish to take for the remainder of her life have been merely not working. As an alternative, she felt worse with each passing month.

However then the medicine have been by no means going to work — as a result of Janice, from Whitstable, Kent, didn’t have most cancers in any respect. It’s one thing that may have been clear had consultants undertaken a routine bone marrow biopsy early on.

As an alternative, for 19 months she lived beneath most cancers’s scary shadow, in addition to affected by spiralling in poor health well being from the more and more aggressive chemotherapy — weight reduction, bleeding gums, thinning hair, nausea and fatigue — which in time pressured her to surrender the job she cherished in a neighborhood care house.

East Kent Hospitals University NHS Foundation Trust in early December admitted liability and agreed to pay Janice £75,950 damages

East Kent Hospitals College NHS Basis Belief in early December admitted legal responsibility and agreed to pay Janice £75,950 damages

Her anxious husband Garth and her daughters, in the meantime, may solely look on helplessly because the beforehand bubbly 53-year-old grew to become more and more withdrawn and depressed.

It’s little surprise that two years after being given the all-clear — or relatively, being instructed the astonishing information that she by no means had most cancers within the first place — Janice remains to be struggling to come back to phrases with what occurred. ‘I’m undecided I’ll ever get again to being the individual I used to be,’ she displays. ‘My daughters and husband inform me I’ve modified, and I do know I’ve. While you undergo one thing like that it’s onerous to recover from it. It has had a huge effect.’

It’s one motive she determined to convey a negligence case in opposition to East Kent Hospitals College NHS Basis Belief, which in early December admitted legal responsibility and agreed to pay her £75,950 damages. It’s closure of a kind, though Janice — talking to me from her homely front room — would give something to show again the clock. ‘I wouldn’t want what I went by means of on anybody,’ she says. ‘For me it wasn’t in regards to the cash however serving to to make sure that hospitals observe appropriate process sooner or later.’

Janice, who is also a keen horse-rider, had enjoyed good health aside from a diagnosis ten years ago of secondary polycythemia

Janice, who can be a eager horse-rider, had loved good well being except for a prognosis ten years in the past of secondary polycythemia

It will actually have saved an enormous quantity of heartache for Janice and her close-knit household — daughters Odette, 31, and Brogan, 26, by her first husband, and Bailey, 23, and 21-year-old Tatum, her youngsters with husband of 20 years, Garth.

The household numbers have been swelled by the arrival of Odette’s son, Ethan, now 5, and Brogan’s daughters, Heidi, 4, and ten-month-old Phoebe.

An energetic and concerned grandmother, Janice, who can be a eager horse-rider, had loved good well being except for a prognosis ten years in the past of secondary polycythemia, a non-cancerous situation which causes the physique to provide too many purple blood cells.

‘I’d been feeling fairly sluggish for some time, so I lastly went to the physician and had some blood exams. I used to be instructed I had this situation which was thought-about fairly uncommon and often affected aged males,’ she recollects. Her physician instructed her little could possibly be achieved aside from keeping track of it, and that once in a while she is likely to be given a therapeutic venesection — a process just like giving blood, which might assist decrease her purple cell rely.

Years handed with no additional incident. ‘It wasn’t affecting my day-to-day life,’ she says. However by the top of 2016 Janice had began to really feel unwell once more, and after what felt like an countless cycle of infections, determined to contact her docs’ surgical procedure, who organised one other blood check.

This time she was given a brand new GP who rang shortly afterwards to say her purple blood rely was once more excessive, and he had organized for her to have her first venesection on the hospital.

Janice is now having counselling for her ongoing anxiety and post-traumatic stress disorder

Janice is now having counselling for her ongoing nervousness and post-traumatic stress dysfunction

‘He appeared stunned that I hadn’t been referred to the hospital’s haematology division,’ she says. ‘Clearly that fearful me a bit as abruptly it sounded extra severe.’

She was reassured when, following her venesection appointment at a day clinic in January 2017, her physician phoned to say her purple blood rely ranges had come down once more.

Not lengthy afterwards, nonetheless, Janice was at work when the room began spinning and he or she noticed flashing lights earlier than her eyes.

‘One of many different carers instructed me to go straight to A&E, the place docs discovered my blood strain was sky excessive,’ she recollects. ‘It was very scary because it felt uncontrolled, however my blood strain settled down over the following couple of hours and the docs instructed me I wanted to return to my GP and have extra blood exams.’

But extra exams adopted, after which her physician stated he had organized for her to see a guide at Canterbury’s haematology division.

Earlier than that appointment got here by means of, nonetheless, Janice obtained a letter telling her she had been booked for an additional venesection within the hospital’s Cathedral ward which, on Googling, she discovered was the place chemotherapy passed off.

She felt the primary of what can be many pricklings of unease. ‘I did surprise why they have been sending me there’, she recollects. ‘And once I arrived it was fairly stunning with plenty of very in poor health individuals present process some very traumatic therapy.’

With Garth by her facet, Janice recollects questioning out loud what would occur to her blood, because it clearly couldn’t be donated.

‘The nurse instructed me that usually they’d incinerate it however mine can be despatched to King’s Hospital,’ Janice says. ‘I requested why it was being despatched there and was it as a result of they thought it is likely to be most cancers which was the one motive that I may consider. She stated possibly — however I would wish to attend for an appointment with the haematologist.’

Over the three-week watch for her appointment Janice grew to become so anxious that she needed to ask her physician for tranquilisers. ‘I used to be getting myself horribly labored up,’ she recollects. ‘The very first thing I stated to the guide once I noticed him was, “What’s unsuitable with me?”’

The reply was that he wasn’t fairly certain: whereas one blood check confirmed cells that have been ‘pre-malignant’, the outcomes from different blood exams weren’t prepared.

It meant an additional agonising 4 weeks earlier than Janice bought the information she had been dreading at a clinic appointment she attended with Garth and Bailey. ‘The guide instructed me it was a blood most cancers referred to as Polycythemia Rubra Vera (PRV). I bear in mind asking if he was certain it wasn’t secondary polycythemia as I had been identified with that earlier than, however he stated no, it was PRV.’

A illness of the bone marrow that causes the overproduction of purple blood cells, Janice is aware of now {that a} easy bone marrow biopsy, in addition to a scan of the spleen, would have proven this to not be the case. As an alternative, she was left to confront the truth of a prognosis which may result in leukaemia in addition to going hand-in-hand with a excessive danger of getting a coronary heart assault or a deadly blood clot.

Untreated, most victims will die inside three years, though these youthful than 60 can have lengthy lifespans with remedy — in Janice’s case oral chemotherapy capsules she was instructed she would wish to take for the remainder of her life.

‘I had gone from somebody with a manageable, low-level situation to somebody with a probably deadly most cancers. It was horrendous. There was no assist — the guide principally shoved some leaflets for Macmillan nurses at me and that was that. We have been all in shock.’

Her voice quivers as she recollects returning house, breaking the information to her different daughters. ‘It’s a name nobody needs to make,’ she says.

Regardless of her fears nonetheless, it took her 4 days to take her first chemotherapy pill. ‘I knew it was meant to assist nevertheless it felt like taking a cyanide capsule,’ she says.

The side-effects got here rapidly, with Janice overcome with spells of nausea, dizziness and night time sweats, alongside weight reduction and receding gums which led to loosened tooth.

‘I used to be additionally getting each an infection going as a result of my immune system was shot,’ she recollects.

It meant that by August 2017 she had to surrender the job she cherished in a nursing house. ‘I used to be so upset because the place was a house from house. I by no means felt I used to be going right into a job.’

The psychological signs have been even worse. ‘I used to be actually struggling,’ she says. ‘It was on my thoughts the entire time and I went into a really darkish place. I actually thought I may die at any minute.’

She recollects her fiftieth celebration in a neighborhood pub 5 months after being identified, and her daughter Odette’s marriage ceremony in June the next yr, as specific lows.

‘They’re such milestones, however at Odette’s marriage ceremony all I may consider was that I won’t see my different daughters stroll down the aisle,’ she displays. She even passed off in a Race for Life occasion as a visitor of honour, tasked with giving a speech in entrance of a crowd of two,000 during which she spoke about her fears and anxieties.

‘I used to be terrified however afterwards the organiser stated you would hear a pin drop,’ she says. ‘Now I really feel like such a fraud. There may have been individuals in that crowd who’ve misplaced family members — but I didn’t have most cancers in any respect. I simply didn’t comprehend it.’

In the meantime, a irritating sample began to unfold: at her six-weekly medical appointments, Janice would uncover that her blood rely ranges hadn’t gone down, save for a quick interval after the venesection process she was additionally booked in for fortnightly.

As an alternative, with Janice questioning why the capsules weren’t working, over time her consultants selected to extend the dose. ‘I used to be taking three tablets a day at one level. There have been days once I may fairly simply keep in mattress all day as I used to be so exhausted,’ says Janice. It was equally disturbing for her household, specifically her fuel engineer husband.

‘He had misplaced each his dad and mom to most cancers and thought he was now going to lose his spouse, too. It was actually onerous for Mum as effectively — she had misplaced my older brother when he was 24 after he had taken his personal life and was terrified she may need to bury one other of her youngsters. It affected so many individuals.’

Not as soon as did it happen to her to doubt the prognosis. ‘Why would I? You belief the docs, don’t you, and I had had countless exams.’

Because the summer time of 2018 drew to an in depth nonetheless — and feeling more and more in poor health — Janice’s despair was such that she determined to request an alternate type of chemotherapy. ‘I had achieved numerous analysis and discovered there was a costlier, simpler type of chemotherapy which after 18 months I felt I ought to attempt.

‘I used to be instructed that they couldn’t prescribe it at that hospital, however I’d be referred to a different specialist at Man’s Hospital in London. It was the primary time in 18 months I felt a ray of hope.’

She may little have anticipated what she would uncover when she and Garth arrived for her appointment in November.

‘The guide stated she had regarded by means of my notes and blood outcomes and he or she didn‘t suppose I had PRV in any respect, though she couldn’t affirm it and not using a bone marrow biopsy or a scan which after all I had by no means had,’ Janice says. ‘However her intuition instructed her it wasn’t most cancers. I used to be in whole and utter shock. It didn’t appear actual.’

Nor, regardless of this increase, may she make certain: it will take a bone marrow biopsy in early December and one other agonising 4 weeks of ready earlier than, in January 2019, Janice obtained the decision she didn’t dare to dream of. ‘It wasn’t most cancers, and by no means had been’ she says.

As an alternative of reduction, nonetheless, she felt anger. ‘After all, I used to be glad — however I’d misplaced my job and suffered two years of feeling horrible and worrying about dying — all for nothing.’

And naturally, one thing that would have been prevented if primary procedures had been adopted — the idea for her negligence declare, as Shantala Carr, accomplice at Girlings solicitors, which dealt with Janice’s case, explains.

‘It is a case the place easy investigations comparable to a repeat blood check, ultrasound scan of the spleen and bone marrow biopsy weren’t carried out, which might have proven conclusively that Janice didn’t have most cancers,’ Shantala says.

‘Had this negligence not occurred, Janice may have prevented the immense bodily and emotional struggling that she went by means of and continues to undergo.’

A spokeswoman for East Kent Hospitals stated: ‘A misdiagnosis of this sort is exceptionally uncommon, and we wholeheartedly apologise to Ms Johnston for the omission in her care.’

It’s chilly consolation for Janice, who’s now having counselling for her ongoing nervousness and post-traumatic stress dysfunction in a bid to shake off the underlying fears that also haven’t left her.

‘I do know I’m fortunate, as some individuals by no means get that excellent news,’ she says. ‘However I additionally know I can by no means belief a physician once more.’



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