On a misty April morning, I discovered myself stepping off a prepare at a abandoned station. A pleasant taxi driver drove me throughout a flat panorama to a countryside enterprise middle within the coronary heart of rural England.
In the event you imagine the hype, this surprising web site is dwelling to the UK's first cutting-edge bone scans that would herald a revolution in osteoporosis take care of tens of millions of ladies.
Advocates say the £230-a-time scans, referred to as REMS, are higher than these provided by the NHS, which they are saying are so inaccurate they falsely inform sufferers they’ve osteoporosis. They argue REMS scans might save ladies from misdiagnosis and being unnecessarily prescribed treatment, which – though in uncommon circumstances – can have severe unwanted effects.
Provided that this bone-thinning illness impacts round three million Britons – nearly all of whom are ladies – these are daring statements. But it surely's a topic near my coronary heart. After fracturing my shoulder final August – I fell whereas jogging – I used to be discovered to have osteoporosis throughout an NHS scan, referred to as a DEXA, and prescribed drug remedy.
So how did I find yourself at this non-public clinic? In January, I wrote an article about my prognosis to lift consciousness in regards to the illness.
Ruth Sunderland suffers from the bone-thinning illness which impacts round three million Britons – nearly all of whom are ladies
Shortly after, a message arrived in my inbox from the advertising and marketing director of a non-public REMS clinic. (Now we have chosen to not title the clinic.) Mentioning in my article that I had had a DEXA scan, he wrote: 'We offer a way more correct bone scan service.'
They claimed DEXA scans have been 'outdated' and 'vulnerable to operator error.' They added: 'That's why we've ordered a system from Italy that’s extra constantly correct and dependable . . . We don't advocate the usage of harsh medication – we are able to show that adjustments to weight loss program, way of life, train and dietary supplements can treatment folks's bone well being issues. We're very excited to deliver correct scans to folks such as you who’re intimidated by their GPs and specialists.'
As a journalist, I used to be skeptical. I used to be disgusted to be taught {that a} skilled advertising and marketing director might write this manner. And as a affected person, nonetheless recovering from a horrific prognosis, I used to be upset and distraught.
I might see what number of weak ladies would select to imagine that their NHS scan was flawed and that that they had been 'scaredigged' by their docs. For instance, on the clinic's web site, one affected person described how, having initially been identified with 'reasonably extreme osteoporosis' in her backbone, that her backbone 'appeared utterly regular'. The affected person went on to say that she was involved that the 'fraudulent DEXA' was so inaccurate.
And I’ve to confess {that a} small a part of me was floored. I thought of how fantastic it will be if the physician discovered I didn’t have the illness.
In any case, I wished to see for myself, so I paid the £230 payment out of pocket. (The REMS scan, which makes use of ultrasound to measure bone, is just not licensed within the UK.)
Professor David Learn, one of many UK's main consultants on osteoporosis, advised me: 'REMS is an fascinating method. It’s probably a helpful measure of bone mass, however has not but been absolutely confirmed as an alternative choice to DEXA scanning.'
Specialists from the Royal Osteoporosis Society imagine the REMS scan is 'promising within the evaluation of individuals prone to osteoporosis'.
In my assembly with him, the non-public physician, who spoke of his many spectacular {qualifications}, appeared extraordinarily skilled and compassionate.
The REMS scan, which he carried out himself, concerned passing a hand-held probe over my hip and stomach to verify my decrease backbone. It was fast and painless, and I received the outcomes immediately. In keeping with the scan, I didn’t have osteoporosis, the physician advised me. He mentioned my danger of fracture was low.
He suggested me to proceed my drug remedy – ​​a year-long course of injections prescribed by NHS docs, that are confirmed to rebuild bones and forestall fractures. On the time, regardless of my doubts, I assumed the session was fascinating and helpful for increase a complete image about my bones.
Earlier than the appointment, the clinic's advertising and marketing supervisor inspired me to hitch a Fb osteoporosis help group. There, I discovered that the non-public physician has a vocal fan base amongst its hundreds of members.
Nonetheless, the tone of a few of the posts frightened me. In a single, a member suggested one other: 'Don't even take into consideration getting a DEXA. They’re extraordinarily inaccurate and provides many ladies a false prognosis of osteoporosis which then results in docs prescribing treatment.'
Many members' experiences have been just like mine: that they had been to the identical non-public physician for the REMS scan, who 'proved' that their DEXA scan was 'flawed'. The thought that it may need been the non-public REMS scan, fairly than the DEXA, that was flawed didn’t happen to me. I used to be involved that these ladies have been 'prognosis purchasing': selecting to imagine the REMS scan as a result of it was what they wished to listen to.
I didn't notice, till one other member despatched me screenshots final month, that I had inadvertently grow to be the topic of a few of the postings. I found that in January, the advertising and marketing director of a non-public clinic posted an e-mail change between me and a physician on the location. It included a few of my non-public medical data.
The context was the dialogue in regards to the article through which I had disclosed my prognosis. The advertising and marketing director wrote about contacting me to return to the clinic, and added: 'She [me] They got here again with loads of questions that required proof and analysis.
'Okay, however she appears to be wedded to the medical mannequin and… she appears to assume that treatment is the apparent treatment for every thing.'
The gist of the feedback that adopted have been about making an attempt to assist me 'clarify' what I assumed was a 'flawed DEXA scan'. Others weren’t so variety: 'I can't learn any extra about this silly opinionated lady,' mentioned one poster. 'Looks like she has the privilege of being provided a foul poisonous drug. She's fortunate, isn't she. I'm positive she's within the Dr. Is aware of Greatest brigade.'
One other recommended I ought to endure dangerous unwanted effects for writing about mainstream medical views on osteoporosis: 'Karma is a bitch,' she wrote venomously.
That unpleasantness apart – and the way awkward it was to grasp that this dialog was mainly taking place in public, with the advertising and marketing director contacting me – I used to be left with a conundrum about which scan to imagine. So I made a decision to have a second DEXA scan, which I had at a non-public clinic in London. The end result was an identical to the primary scan I had at St Thomas' Hospital.
I’ve osteoporosis. And the second DEXA revealed surprising new data: I had two fractures in my backbone, a reality I used to be unaware of and that put me at very excessive danger for additional spinal fractures.
Neither the primary NHS scan nor the non-public REMS scan caught this as a result of they didn't take a look at that a part of my again. If I had made a remedy resolution based mostly solely on my REMS scan, which confirmed I didn't have osteoporosis, I may need chosen to not take the treatment.
In keeping with the opinion of mainstream medical consultants, this might have put me prone to a disabling, painful fracture. Primarily based on an earlier NHS scan, I used to be already on remedy to minimise the chance.
In fact, that is simply my private expertise. It's not attainable to generalize in regards to the general reliability of REMS or DEXA. And consultants say REMS know-how is thrilling and will have loads of potential. However a few of the claims made about it appear to go too far.
Ruth fractured her shoulder in a fall whereas jogging final yr
Likewise, I'm definitely not arguing that DEXAs are correct. DEXA scans give a 'rating' that appears a little bit arbitrary: a fraction of a share level both aspect of the road and you’re thought of both to have osteoporosis or not.
However the greatest downside by far, in my thoughts, is that many individuals in danger don't have entry to any scans in any respect.
In a single heartbreaking case, I wrote a couple of man who had suffered a spinal fracture ten instances earlier than he was identified with osteoporosis and provided remedy. Because of this I launched this newspaper's profitable marketing campaign to ascertain fracture liaison companies in each NHS belief within the UK, in order that anybody over 50 who involves A&E with a damaged bone can have a scan.
When contacted by the Minister of State, the advertising and marketing director of the non-public clinic denied that she had inspired me to hitch the Fb group, arguing that she had merely knowledgeable me of its existence. She additionally denied sharing my non-public medical data.
The advertising and marketing director added: 'We don’t counsel that individuals ought to have REMS scans as an alternative choice to DEXA scans. REMS scans are a type of ultrasound that measures bone density and high quality – they don’t detect fractures or breaks. Now we have by no means recommended the alternative.'
REMS scans supply hope, however docs can't depend on them for prognosis
DEXA – a kind of X-ray scan – was launched within the late Eighties and is the gold normal in healthcare for figuring out osteoporosis.
The scan takes about quarter-hour and is painless. You lie in your again on a sofa and the scanner passes over your backbone and hips.
Ruth's spinal scan
You might also be given a vertebral fracture evaluation, which may determine damaged bones in your backbone, both with a DEXA or individually. For this, you lie in your aspect beneath the identical scanner.
The outcomes normally come again out of your GP or hospital inside a number of weeks. They're given as a T-score, which compares your bone density to that of a wholesome younger grownup. Something between plus one and minus one is regular.
A rating between minus one and minus 2.5 is assessed as osteopenia, which suggests the bone density is barely decrease than that of a wholesome younger particular person. A rating of minus 2.5 is assessed as osteoporosis. You might also be given a danger evaluation of how weak you’re to fractures.
In case you are suspected of getting osteoporosis and are receiving remedy, you need to have a repeat DEXA scan. Critics say they’re usually unreliable due to operator error and that when osteoporosis is a systemic illness, there’s usually mismatch between the backbone and hip.
REMS – or radiofrequency echogenic multispectrometry – makes use of ultrasound to measure bone. The process is fast and painless and entails mendacity down whereas a gel-covered probe is inserted over the hip and stomach.
It takes about ten minutes and the outcomes can be found instantly. You’re prone to get a rating just like a DEXA and a fragility rating assessing your bone energy.
Specialists on the Royal Osteoporosis Society say REMS scanners are 'very new and haven’t but been broadly evaluated.' In different phrases, whereas REMS could also be improbable know-how, we don't but understand how dependable it’s. Docs can't use it to make choices about drug remedy.
