Highland nurse blames care errors for avoidable sight loss

The condition, caused when arteries in the head become inflamed, requires urgent intervention but vision loss can usually be prevented with steroids if symptoms are recognised in time.

Dr Farmer, whose 40-year career spanned senior nursing posts in the NHS and academia, is now completely blind in her left eye and has only minimal vision her right.

She has lodged complaints about her care by NHS Fife and Highland with the Scottish Public Services Ombudsman, but was shocked when the watchdog said it would take around 11 months before it can even consider the case.

She wants more done to make at-risk patients and clinicians aware of the warning signs, adding: “My whole story is a perfect description of the terrible mess that NHS Scotland is in.

“It’s a bureaucratic mess. The staffing is awful, there’s no integration whatsoever, and there’s no services for people like me once we are blind.”

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Dr Farmer said she had been “disgustingly healthy and very independent” up until a diagnosis of rheumatoid arthritis seven years ago, where the immune system mistakenly attacks the joints causing painful swelling and stiffness.

During the pandemic she was switched from steroids to a biological therapy, Rituximab, which suppresses the immune system.

She has since learned that patients over 55 with autoimmune disorders who are also immunosuppressed are more susceptible to GCA, with one clinician said to have been “horrified” that she was not maintained on a precautionary dose of steroids at the same time.

Dr Farmer’s symptoms began in September 2021, when she was staying at a hotel in Fife while visiting her sister, who was terminally ill in a care home with Parkinson’s Disease.

“I woke up in the middle of the night with this terrible headache and pains all over my face and scalp - I thought my head was going to blow off,” said Dr Farmer.

“My throat was red and burning. Every vessel in my face and my head was on end.”

Dr Betty Farmer lost her sight in the space of a few weeks after GCA symptoms developed (Image: Peter Jolly)

A Covid test was negative, but Dr Farmer noticed she was losing weight and began to experience difficulties chewing.

The main symptoms of GCA are frequent, severe headaches; pain and tenderness over the temples; jaw pain while eating or talking; and vision problems.

Flu-like symptoms and weight loss are also common.

However, when Dr Farmer later contacted her GP, she was prescribed penicillin and told to call back for a throat swab if the symptoms persisted after 10 days.

However, when she did - on October 15 - she discovered that the GP surgery was closed for a public holiday and, on the same day, received a call from her sister’s care home in Fife that her sister had “significantly deteriorated”. 

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Dr Farmer rushed to Fife, but the headaches became more intense and she began to experience other symptoms - including difficulty swallowing and black spots in her vision.

She sought help from an optician. 

“He was horrified,” said Dr Farmer. “He took pictures and sent them immediately to the eye clinic. 

“He should probably have sent me straight to A&E, but supposedly there was a pathway in place. 

"I was told I’d be called in for an appointment the same day, but the call didn’t come.”

Guidelines stipulate that patients with suspected GCA who are experiencing vision problems should get a same-day appointment with an ophthalmologist at a hospital eye department.

But when Dr Farmer telephoned the eye clinic later that day she said she was wrongly told that the doctor could not see her unless she registered with a GP in Fife first.

She finally got an appointment to see the consultant ophthalmologist the next day, but only after contacting the doctor’s medical secretary directly.

She said: “By this point I’d lost the sight in my left eye and most of the right eye. I’m left with grey shapes and shadows.

“When they [the consultant] saw the situation they said it was ‘classic GCA’. They were horrified to learn that I was on Rituximab with no steroid back up and immediately put me up on a steroid infusion.”

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Dr Farmer was admitted as an emergency to the Victoria Hospital in Kirkcaldy where she spent three nights, but it was too late to save her sight.

“The day before I was discharged, my sister died,” said Dr Farmer.

“My sister was the kindest, loveliest person - she never, ever asked me for anything. Except: ‘don’t leave me alone when I die’. That’s hard to take.”

Dr Farmer was finally admitted to the Victoria Hospital in Kirkcaldy in October last year, but it was too late to save her sight (Image: jj)

Dr Farmer said she is “utterly convinced”, after speaking to doctors, that the change in rheumatology medication led to the onset of her GCA - an error compounded by the delays in diagnosing and treating the condition.

While her own GP surgery quickly carried out a serious case review , she felt that her concerns were “brushed off” by the health boards - leading her to escalate her complaints to the SPSO.

She has also been left frustrated that her calls to issue leaflets about GCA to doctors and patients has been rejected.

Dr Farmer said: “They say GCA is rare - but it’s not rare, it’s underreported.

“There are five groups in Scotland in each of the big cities with members who have all suffered and continue to suffer.

“I’m not interested in money or compensation - I never wanted to go public.

"I’m not interested in anything except stopping someone else going blind, and for that you’ve got to give people the information.

“Sudden blindness is horrific - I’d sooner lose an arm than go through this, but it’s avoidable and it can happen to anyone, especially if they’re over-55 and immuno-suppressed.

“If they had told me I might be susceptible to this and ‘here’s the symptoms’, none of this would have happened. In my case I was treated for a sore throat when that was the least of my problems."

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A spokesman for NHS Highland said: “We are sorry that the patient feels the level of care provided is not what she would have expected.

"We cannot comment on individual cases and we will work closely with the SPSO to review this case in more detail if required.”

Janette Owens, director of nursing for NHS Fife, said: "We are unable to comment on the care of individual people for reasons of patient confidentiality.

"We can confirm, however, that our Patient Relations Team remain in dialogue with the individual to discuss their concerns fully."