Having spent the day rushing around to prepare the house for visits from her four godchildren, and enjoying her twice daily countryside walks, Jennifer Kinnis found a quiet five minutes to log on to her GP’s website, intending to book a routine asthma check-up.
As the 74-year-old from Margate, Kent, scanned her medical records, under the heading of ‘medical conditions’, she came across two words, in bold, that made her pause for breath: MODERATELY FRAIL.
Her initial reaction was shock – she had no idea how this diagnosis had been made. There had been no recent check-up or conversation. Shock was quickly replaced by anger.
Indeed, Jennifer, who is a keen skier, says she was ‘absolutely furious’.
To most of us, the word frail conjures up images of a hunched old figure, bent double with a walking stick. To Jennifer, the label wasn’t simply inexplicable – it felt like a slap in the face.
Pam James, 75, from Somerset, was understandably ‘horrified’ to learn that, according to the NHS, she had been branded ‘moderately frail’
She says: ‘I cannot see how it is acceptable to rate me as frail.
‘My asthma is very mild – I am on the lowest dose of medication. I use my pump so infrequently that I recently had to get it replaced because it had gone out of date.
‘I have never smoked, drink alcohol only in moderation and have always been the correct weight, with healthy blood pressure.’
Yet, there it was, in black and white. Somehow it had been decided that she was frail. And Jennifer’s case, as bizarre as it sounds, is far from unique.
Earlier this month, The Mail on Sunday’s resident GP, Dr Ellie Cannon, responded to a letter detailing a similar story, explaining the reason for this classification.
Since 2017, medical records of all patients over the age of 65 have been automatically scanned by a computer program called the Electronic Frailty Index.
A rating – fit, mildly frail, moderately frail or severely frail – is then written into each patient’s medical notes.
The calculation is based on a host of factors including age, weight, health conditions and medication.
The idea is that by spotting frailty, GPs will be better able to help those patients at risk of suffering certain problems in future, such as falls at home, fractures and even side effects of certain medicines.
But scores of angry readers who have written to this newspaper have said the label, which they’d discovered only when logging on to their online medical records, came as an unwelcome shock.
And, many have argued, one that’s also completely unwarranted.
Part of the problem may stem from Covid restrictions placed on general practice.
A true diagnosis of frailty should be made, according to the guidelines, only after a detailed face-to-face assessment has been done.
This can be done at the surgery, during a routine check-up or by a specialist team who can visit patients at home.
But with GP services increasingly forced to prioritise urgent cases and adopt online services, it seems this key step may not have been happening as it should.
Many readers, like Jennifer, say they were never seen. And in nearly all cases the rating was given without their knowledge.
Pam James, 75, from Somerset, says she loves nothing more than pounding a treadmill – she owns one – and playing hide-and-seek with her five-year-old grandson Luke.
Last year, during the first lockdown, she raised hundreds of pounds for the cancer charity Penny Brohn UK – for which she is a volunteer – by hula-hooping for five to ten minutes every day for 26 days in a row.
Since 2017, medical records of all patients over the age of 65 have been automatically scanned by a computer program called the Electronic Frailty Index. Pictured: Stock image
A rating – fit, mildly frail, moderately frail or severely frail – is then written into each patient’s medical notes. Pictured: Stock image
And, pre-pandemic, she would travel to San Francisco up to four times a year – on her own – to see her son and other two grandchildren.
So young-at-heart Pam was understandably ‘horrified’ to learn that, according to the NHS, she had been branded ‘moderately frail’.
Pam spied the words on her GP’s computer screen, while attending her regular asthma check-up in 2019. Prior to that, she hadn’t actually seen her doctor for years.
By the definition used by the health service, moderately frail means she is likely to ‘have difficulties doing outdoor activities, problems with mobility and need help with tasks like washing and dressing’.
Meanwhile, it says that someone with severe frailty will have ‘weak muscles’ and ‘walk slowly, get exhausted easily and struggle to get out of a chair or climb stairs. Typically they are housebound, or only able to leave their home with help.’
None of these things are true of Pam. She says: ‘I questioned the doctor as soon as I saw it on the screen, and he said I shouldn’t worry, that it was ‘just a classification’.
‘But I went home and looked up frailty online – there were pictures of elderly people with Zimmer frames. That’s not me.
‘Apparently, it’s helpful to find out who is frail as those people might need help with shopping. If anything, I need help to stop me shopping.’
Although she has mild asthma, takes blood pressure tablets and has osteopenia – a mild type of bone thinning that affects three million Britons – she says: ‘At the moment I feel healthier than ever. I lead a very active life. It would be laughable if it wasn’t so insulting.’
Retired health visitor Jean Eaton, 76, tells a similar tale. ‘I was accidentally given a copy of my frailty score form.
I was shocked,’ she says. ‘The doctor who completed it was a junior GP and had only seen me once when he treated me for an infected horsefly bite.
‘I was in the surgery less than five minutes and wasn’t asked any questions about my health and capabilities.’
She adds: ‘The form stated I currently needed help with shopping and walking. Perhaps I had limped in because of the infection in my leg, but I was – and still am – very fit with no serious health problems. I walk, shop, drive, go on holiday, write books, volunteer at an HIV centre.
‘I understand the importance of a frailty score. But for a doctor to categorise patients without discussion, when the patient is perfectly capable of answering all questions sensibly and honestly, is not only unfair but denies the patient the opportunity to discuss their own concerns for the future.
‘I feel very strongly that it’s wrong to make an assumption about my state of health and file that as an accurate document. The whole thing was made up.’
Helen Knock, 71, from Derbyshire, recently noticed her mild frailty rating when logging on to view blood test results on her NHS app.
‘I can assure you that it is rubbish,’ she says. ‘I can walk further than a younger person and I look after and run around after two grandchildren, aged nine and 12.
‘I am perfectly capable of cleaning, cooking and doing all the laundry and ironing.
‘This rather smacks of Big Brother and needs bringing into the open before someone is denied treatment on these grounds.’
Shockingly, some readers say their frailty rating has been used to inform clinical decisions.
Susan Bullen writes: ‘My husband and I received a letter last March informing us that we were both ‘mildly frail’.
‘The letter then asked if we would like to sign a Do Not Resuscitate form (declining medical treatment in an emergency) in case we were hospitalised. It made us both feel sad and worthless – we refused to sign.’
Another reader says she found the label insulting. She adds: ‘My 75-year-old husband discovered he had been classed as frail when he tried to book an appointment online. Yet he’s in good health and can walk some distance without even getting out of breath.’
She was told by the GP surgery her husband was automatically classed as moderately frail once he turned 75.
Few would argue true frailty isn’t a cause for concern.
Older people with multiple health problems are more likely to be taking many different drugs a day – increasing the risk of side effects that can lead to injury due to falls or confusion.
The cost to the NHS of treating people with frailty-related issues – including fractures and mental health problems including dementia – is thought to be a staggering £6 billion a year. With an ageing population, that figure is likely to grow.
The NHS was actually the first health system in the world to adopt the bold strategy of actively looking for signs of frailty before it becomes a problem. But something has clearly gone awry, if our readers’ letters are anything to go by.
What has puzzled many is how they qualified as frail when they are living healthy, independent lives.
Even prior to the pandemic, practices were discovered to have been using the Electronic Frailty Index program to come up with a frailty diagnosis, then claiming Government funding for a full diagnostic check.
The computer assessment would be expected to score roughly one in ten over-65s as moderately frail, and three per cent as severely frail. As a result of the faulty assessments, NHS England issued a warning to all surgeries that using the computer program alone was ‘a breach of contract’.
They warned: ‘The [Electronic Frailty Index] is a risk-stratification tool and not intended to be used for diagnoses. Confirmation of frailty should be undertaken with a gait speed test (a measure of walking speed) or a timed get-up-and -go test (the time it takes to get up from a chair, walk three metres and walk back).’
Even Professor Martin Vernon, former national clinical director for older people at NHS England – who helped set up the frailty-screening programme, says: ‘The Electronic Frailty Index is not a diagnostic tool and no diagnosis should be attached to a patient until they have been directly assessed.
‘But we know some GPs do use it to make a diagnosis, and that’s wrong. The software has not been validated for diagnosing patients so it is inappropriate. You have to see the patient in person if possible.
‘It’s absolutely crucial to get this right because wrong diagnosis of frailty could lead to wrong decisions being made.’
A faulty diagnosis of frailty could mean patients put at risk of ill-heath through, for example, unnecessary changes to their medication regimes.
Dr Tom Yerburgh, a member of the British Medical Association’s GP committee, says that the vast majority of family doctors use the frailty screening system appropriately.
‘This isn’t GPs cutting corners,’ he says. ‘In most cases it will simply be that the software has automatically added the frailty risk to the patient’s records, so that doctors can then help them.
‘But I can well understand that patients may get upset at seeing it there when they had no idea. For many people, being called frail is almost an affront, implying that they have somehow failed to age well. It’s a highly emotive word.’
Hula-hooping Pam James clearly feels so. She says: ‘I think they need a new system, if what happened to me is anything to go by. I don’t look 75, I don’t feel 75 and I am certainly not frail.’