Family of QEUH Cryptococcus patient 'suspicious' NHS statement timed to avoid post-mortem

"We were always suspicious of that," said Armstrong.

"This was the first we had heard of another death and if we had known before we would have insisted on a post mortem."

Gail Armstrong holidaying in Turkey before her illness

Sandie said her mother had been a "fit and well" 73-year-old despite living with incurable lymphoma, a form of blood cancer.

The mother-of-two, a social scientist and retired director of Castlemilk East Housing Co-op, had travelled to Australia and Vietnam in the two years following her diagnosis and was visiting Sandie at her home in Hove when she suffered a relapse in October 2018.

READ MORE: Families 'failed by secrecy' over confidential QEUH infections evidence 

Gail was admitted to hospital in Brighton before being transferred to the Queen Elizabeth University Hospital in Glasgow, where she began chemotherapy on November 12.

The treatment was halted one week later, however, when she developed symptoms of a rare infection caused by Cryptococcus neoformans - a fungi common to pigeons and their excrement.

"It really took a toll on her, " said Sandie. "She basically lost the use of her legs, she couldn't get out of bed. At one point when she was really deeply in the illness she was talking jibberish."

The bug is widely present in the environment and usually harmless, but in immuno-compromised people it can lead to a potentially fatal meningitis.

It is virtually unknown as a hospital-acquired infection, however, leading Andrew Streifel - an American infection control expert who advises on hospital design - to tell BBC's Disclosure recently that he wouldn't expect any patient to contract it "unless [they] were around the rookery or some kind of intense bird sanctuary".

READ MORE: QEUH whistleblower says staff told 'not to put anything in writing' in case of future inquiries 

Sandie, 54, said medics at the QEUH "played down the rarity" of the infection, but the family became uneasy when they were told in December of a second case at the hospital.

"I asked 'are they alive or dead?', but they told me they couldn't tell me anything due to patient confidentiality," she said.

Gail was treated with a £30,000-a-week course of anti-fungal therapy and was well enough to spend Christmas Day with her family.

At that time medics said the infection had cleared but they would continue prescribing another anti-fungal drug for a year as a precaution. There were plans to restart chemotherapy.

Gail Armstrong (right) with husband Jim Cowan and daughter Beth

However, within days of the new year, Gail rapidly deteriorated and died at the QEUH on January 7.

"They just said it was because of the cancer, and I kept saying 'has Cryptococcus had some impact on the speed of her decline?'," said Sandie.

"They couldn't really answer that question. But the atmosphere was very charged and very tense."

She said she wanted a post-mortem to determine the cause of death but backed off because her stepfather Jim Cowan was "absolutely bereft".

"I was very aware that they [NHS Greater Glasgow and Clyde] really wanted lymphoma to be signed off on the death certificate and I wasn't happy about that," said Sandie.

"They were very keen - and constantly repeating to the family - that it was lymphoma that she died of, that they couldn't find any traces of Cryptococcus in her blood anymore.

"Yet they were keeping her on this anti-fungal maintenance therapy.

"We know now that to be sure they would have had to do a lumber puncture [when she was alive], and they said they couldn't do that because she wasn't fit enough.

"They would have been able to find out from a post-mortem though, but of course by then they knew a child had died with the infection."

In December, Cryptococcus neoformans was detected during post-mortem of a 10-year-old leukaemia patient treated at the QEUH, and later cited as contributory factor in the boy's death.

This was not made public, however, until a press release issued by NHS GGC on January 18 - the day after Gail's cremation - which described "two isolated cases of an unusual fungal infection".

READ MORE: Family in FAI plea over death of baby daughter with rare toxin 

The health board confirmed to press that both patients had died, saying the circumstances behind the child's death were "still under investigation" but the "elderly patient" had died from an "unrelated cause".

Both deaths were subsequently referred to the Crown Office, however, and the Armstrongs were told in February this year that an independent haematologist hired by the procurator fiscal has concluded that the infection was a contributory factor in Gail's death.

The evidence for his findings has not yet been shared with the family, however, pending a decision by the Crown Office on potential criminal proceedings for negligence.

An Independent Review - chaired by former NHS Fife chief executive Dr Brian Montgomery and NHS Health Scotland's director of public health science Dr Andrew Fraser - found that blood cancer patients had been "exposed to risk" by design flaws in the QEUH's ventilation and water systems, but concluded that there was "no clear evidence" linking these to avoidable deaths.

It also ruled out any "sound evidential basis" linking the Cryptococcus infections to pigeons or their excrement at the site.

This was based on confidential witness testimony and internal reports commissioned or carried out by NHS GGC which they said had discounted the possibility of fungal spores spreading through ventilation shafts to where the patients had been treated.

None of this evidence has been shared publicly, however, as a result of the forthcoming public inquiry involving the QEUH, scheduled to start on August 3.

Sandie said: "It's all closed evidence - that's quite Orwellian. You wouldn't ever be able to say in a court 'we've got evidence that disproves everything but we're not showing you any of it, and we're not disclosing the identity of any of the people who have said this'.

"That is one of the things that I'm most angry about - that these doctors can go public saying we've discounted these links, and give no evidence.

"The Cryptococcus was there, whether they can find it or not, they know it was there because two people got it."

She added that the family has been unable to grieve properly in the past 18 months due to their ongoing fears that circumstances around Gail's death have been "covered up".

"Quite apart from the fact that [the infection] increased Mum's suffering terribly, it might have shortened her life by years, let alone months - we'll never know because her cancer treatment stopped.

"But it definitely shortened her life, and it definitely affected the quality of her death.

"And [NHS GGC] have made it even worse because they have not been straight with us.

"We feel they've been shadow boxing with us the whole way along."

A spokesman for NHS GGC said: "Our sympathies remain with Mrs Armstrong’s family. We are sorry that questions remain for them and are committed to providing answers wherever we can.

"We would welcome the opportunity to meet the family to discuss these issues and will be in touch with them to offer a meeting.

"We appreciate how important it is for relatives to be fully informed of the circumstances when a patient dies whilst in our care.  Mrs Armstrong’s death continues to be investigated by the Procurator Fiscal.

"We have also investigated a number of concerns from Mrs Armstrong’s family and have carried out a significant case review into her care. The findings from this review have been shared with the family. 

"The forthcoming Public Inquiry will also consider communications with families as part of their investigations. We are committed to fully participating in that process."