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Stroke victim’s family: ‘We’re not being listened to’

Jenny Rose [pictured with husband Donald] suffered a debilitating stroke after a change to her warfarin dosage – her family want answers. PHOTO/SUPPLIED

‘Victim of a chain of errors’ – family
In 2018, Jenny Rose suffered a stroke that left her requiring 24-hour care. An independent report by ACC found a series of errors caused the stroke but the Health and Disability Commissioner has refused to investigate further. Arthur Hawkes reports.

Two years ago, Jenny Rose was described as the “matriarch” of her family. She was active in the community and relished spending time with her children and grandkids.

In 2018, the now 70-year-old suffered a debilitating stroke that left her requiring 24-hour care, confined to a wheelchair, and with severe aphasia, meaning she can now only communicate through gestures, facial expressions, and a select few words.

Her family have identified several significant problems related to the administration of the blood-thinning medication warfarin, given to prevent strokes, which an independent report from the Accident Compensation Corporation confirmed to them.

Today, her family are questioning the Health and Disability Commissioner’s decision, made public at the beginning of this year, to not investigate further. They are demanding a fresh investigation into what they are calling “a gross miscarriage of justice”.

Rose first went on warfarin after a heart procedure in 2004, to fit a mechanical St Jude’s valve, and stayed permanently on the medication, which became part of her daily routine.

When patients take warfarin, their blood’s ability to clot is constantly monitored, achieved using what’s called an international normalised ratio test.

This allows for warfarin dosages to be regulated to keep INR levels within a healthy range.

For most people on warfarin, INR levels should fall between 2.0 and 3.0. Going below two poses the danger of clotting and above 3, there is a risk of haemorrhaging.

For 14 years, Rose was stable and experienced no problems with the medication.

For the two years before the stroke, the dosage guidance and INR monitoring had been provided by Wellington SCL, a dedicated medical pathology practice that provides world-class services to the Wellington and Wairarapa regions.

However, at the time of Rose’s stroke, Wellington SCL had been actioning a planned phasing out of their warfarin dosage support, which meant that the onus was shifted to local primary care providers; Rose’s was Carterton Medical Centre.

In an article on the medical news site New Zealand Doctor, journalist Virginia McMillan said that, according to Wairarapa DHB, the GPs were “concerned” about this and “saw an obligation on SCL, if it withdrew, to provide an alternative”.

McMillan also quoted Dr Tony Becker of Masterton Medical, who said SCL’s long term administration of the dosages “was how it was sold to us, and it was one reason we supported SCL … so it was for some of us a bit disappointing they could get out of a contracted service”.

Dr Garry Brown authored the ACC’s independent report into Rose’s stroke, which uncovered a chain of mistakes leading up to the event.

“There is a close temporal link between the three- to four-week period when Mrs Rose’s INR levels were sub-therapeutic, and the formation of a cardiac thrombus that led to a major embolic MCA [middle cerebral artery] stroke,” Dr Brown said.

“Mrs Rose had been apparently stable on INR for 14 years before this period.

Long-term management of her INR was recently transferred from SCL Laboratory to her primary care team,” he added.

Stuart McKay, the Roses’ son-in-law, said that during this changeover, her INR levels were inadequately communicated to her primary care team, a claim supported by a letter from Sandra Moore, practice manager at CMC.

According to Moore’s letter, a communication from Dr Malcolm Abernethy of Wakefield Heart Centre [where Rose had the 2004 valve operation], stated only that Rose’s INR levels were “typically running in the mid-2s”.

Moore said they could find no other notification regarding a target level change, and added that CMC had been dosing Rose “based on a target level of mid-2s”.

McKay was “stunned” when he read Moore’s letter – he knew that for those with a St Jude’s valve replacement, INR levels should be higher: between 2.5 and 3.5, rather than 2.0 and 3.0.

Moore also stated that, in the month after Rose’s stroke, CMC’s Dr Craig Cherry called Dr Abernethy to ascertain the exact advised range that was held on Wakefield Heart Centre’s records.

“They advised a higher INR target range of 2.5 to 3.5,” Moore said.

“We have now reviewed our processes to ensure that we confirm and document a target range indicated by a specialist in the patient record.”

Concluding the ACC’s independent report into the stroke, Dr Brown stated that BPAC [Best Practice Advocacy Centre] guidance was not followed by CMC.

“In the case of Mrs Rose the nurse practitioner made a substantial reduction in the weekly dose by 25 per cent [4mg daily to 3mg daily] with advice to retest in four days on 26/3/2018”

“The 23/3/2018 INR result of 3.7 was slightly above the upper limit of the desired range. Over anticoagulation is considered when INR levels exceed 5.0.

“The BPAC guidance for no change in warfarin dosage, and to recheck INR levels in one week, was not followed.”

Rose then had another test, which showed her INR was marginally lower at 3.3 [within the recommended mechanical heart valve INR bounds], but no dose change was recommended and she was maintained on the substantially lower regime of 3mg per day.

According to the ACC report, this was likely to have caused the clot that led to Rose’s stroke.

As her INR levels continued to drop, Rose was reportedly heard on the phone telling CMC “there’s a mistake with my warfarin”, which was a concern she had simultaneously been voicing to friends and family.

McKay called this a “breakdown in patient-led care”, particularly as Rose had considerable experience, having taken warfarin for over a decade.

McKay said Rose’s concerns were ignored, and that she was the victim of a chain of errors.

On January 31, 2020, Rose Wall of HDC said the Crown entity would take “no further action” on a complaint McKay had formally lodged.

McKay thought the decision stemmed from a lack of investigative rigour.

The family said they had not been listened to, and now want answers and a fresh investigation from HDC, that takes into account the breadth of evidence, including the report from the ACC, the changeover of
warfarin administration, and the concerns raised by the patient before the stroke.

3 COMMENTS

  1. dear editor i’m not happy and I would like the investigation open again.Me and my family want to know what happened.

    We need answers of what went wrong and what caused the severe stroke.So we can stop being sad and feeling like were not being listened to. We don’t want another one to happen and we want to know what went wrong ,so we can prevent this from happening again.

    I just don’t want the investigation open for my aunt, but for those who had/might have this happen to them. I want to get answers to help others through this .I don’t want people to go through what my aunt Jenny did, and for that to be possible we need the investigation open again.

    I want to be able to help her enough so she can talk and maybe walk again. But that might not happen unless the investigation doesn’t open again, We wan to be able to see the old active aunt Jenny again. but we can’t cause we don’t know what went wrong, or if she can ever walk again.

    Thank you for reading my letter of concern and worries. I just needed it to be said and sorted out ,but please run this by who decided to stop the investigation . So we can help fix this for people. Have a good day/night sincerely kaitlyn.bogue

  2. Needs to be addressed so others don’t have to go through what she has. Also, I feel she needs an apology as she through no fault of her own is now sadly lacking the ability to live her life as she should have been able to expect to

Comments are closed.

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