The blind fate of hiding a condition

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The sad passing of Cilla Black was mourned by the nation but one unsung element of her inspiring life was her battle with rheumatoid arthritis. It emerged that, according to close friend Sam Leach, the singer struggled with the RA but preferred to let the show go on rather than make a fuss.

Like many of her generation, she just wanted to get on with life, and work, without a deluge of sympathy but rheumatoid arthritis remains a condition of the margins. Not many chronic conditions make easy dinner party topics but RA seems to have built up a peculiar resistance to public understanding and sympathy.

No-one can blame Cilla for not making a song and dance of her condition but it brings into sharp focus how little we appreciate the damage it can do…to all ages. A misconception is that it is a disease restricted to later life -which may be the prime root of its life in the health margins – yet it strikes at the very young and is a curse of tens of thousands in their early 20s.

It affects 690,000 people in the UK (that’s around one in 100 of us) and the curious thing is that people just don’t talk about it that openly. I’m often amazed that when I raise the subject of RA, someone will know someone with it, often people approach with a quiet word in private about how their wife, girlfriend or brother has the condition. Easy admission here: I didn’t speak about it either until someone very close was diagnosed; harder explanation here: I probably thought it was an older, end of life inevitability, something to do with a physical wearing out of the bones (osteoarthritis) rather than a complex auto immune disease.

The science of the body’s auto immune pathways is fascinating and within them we are finding ways of treating a host of conditions. But RA remains steadfastly in the shadows. It is a modern puzzle.

Ailsa Bosworth, chief executive and founder of the National Rheumatoid Arthritis Society (www.nras.org.uk) reveals that the actress Kathleen Turner, an Academy Award nominee in the 1980s, hid her RA until a few years ago, enduring jibes that she had a drink problem because her face became puffy from the steroids she was on and the condition made her unsteady at times.

“I am only too aware that this propensity to ‘hide’ rheumatoid arthritis as if it is somehow shameful or unacceptable to have such a disease, is common, and not just amongst celebrities,” says Ailsa.

“It’s painful and life changing and there is no cure, although if diagnosed early and treated appropriately, there is a lot more that can be done today to keep people living a relatively normal life than for people like me and Cilla who were diagnosed a long time ago when treatment was different and we didn’t have access to the range of drugs we have today.
“People in the public eye don’t seem to have a problem admitting that they have cancer, heart disease, diabetes, asthma, dementia and other conditions, all of which have a high profile in the media. Yet with RA,  people prefer to hide their disease from friends, family, employers.

“I would like to make a plea to everyone living with RA. Please don’t hide it. We need the public to understand what RA is and what it means to live with it. In the workplace you are likely to get more sympathy if you sprain your ankle than if you live with RA.”

The drugs do work these days but early diagnosis is essential to getting RA under control before it causes too much joint damage. (RA is when the body’s immune system becomes over active and attacks the lining of the joints causing inflammation) People with the condition can life fulfilling lives but, if it stays hidden, their joints, particularly within the hands and feet, can be irreversibly damaged.

Ailsa adds: “I salute you Cilla and perhaps your battle with RA and yet your huge lifetime achievements will inspire others living with RA to start talking about this disease in the same way as we talk about cancer and dementia.”

It is a common condition. It is now time for RA to come centre stage into the spotlight.

 

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Beauty is skin deep

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Commercial beauty is rarely the full picture. We are constantly exposed to images, mainly through advertising and fashion, that set the parameters of perfection.
We probably know they are false, unattainable, yet the daily drip of re-touched, paradise backdropped ‘beauty’ inevitably confusess our senses of rational determination.
But that corruption is being re-calibrated by a fascinating and challenging project that puts people with skin conditions in front of the camera. And it is not just any camera, it is one wielded by celebrated photographer Rick Guidotti, who has worked with towering beauties such as Cindy Crawford and the top fashion houses in Milan, Paris, New York and London.
I met him last week on the campus of pharmaceutical giants Novartis, in Basel, and traditional glamour was the last thing on his mind.
“I was always told who was the model of the day. I was told who was beautiful and I bought it,” he said. “But it was ultimately frustrating. I am an artist and I don’t want to be told what is beautiful.”
A change meeting with a teenager with albinism on the streets of New York changed his focal length outlook on life and work and he started championing diversity through his photographs.
Out went the supermodels, catwalk drones and prescriptive booking agencies and Positive Exposure was born. http://positiveexposure.org/
It is his mission to re-define beauty, strip away the camouflaging gloss and shows us a stigma-challenging reality.
Who photographs people with chronic skin conditions such as psoriasis and chronic spontaneous urticaria? Rick does. And he is passionate.
He is working on a project, supported by Novartis’s Skin to live in campaign http://www.skintolivein.com, that shows these real models for the real people they are. No studio, just natural light and people freed to live in their skin.images
17 people from 11 countries stepped out of the shadows to be photographed by Rick for the campaign. One of them happens to be a ballet dancer from New York, who was struck by psoriasis when she was three-years-old; another is a mum from Brazil. His gallery shows the person beyond the condition and it is refreshing.
He photographed them as beauties; in the past they shunned the camera and were only used as examples in medical textbooks. His work covers all forms of genetic diversity and, with his expert touch, the character not the condition shines through.
Rick’s passion is like a waterfall, check him out on an inspiring TEDX talk https://www.youtube.com/watch?v=yIKM7_rgUXU
We have an easy facility to look away when we see something different and as we are continually bombarded by images of what is and isn’t acceptable the field of ‘normal’ vision narrows….we become less accepting. We also have less time to stop and consider.
I’ve interviewed many people with skin conditions and, although the physical pain and discomfort sound corrossive, the damage to their confidence and self-esteem is evident. They talk about being prisoners in their own skin….stop just a minute to consider that.

Having to itch, scratch and squirm is one (enormous) thing but to have your personality and opportunities compromised is another (equally enormous) thing.
Medical advances have provided relief for sufferers and the work decoding the IL-17A pathway that is a route to debilitating skin conditions is truly game-changing for millions worldwide. But it will take us a bit longer to look and see through eratz beauty.
Rick sums it up perfectly…
Change how you see
See how you change

Gadgets – use them or lose them

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Health innovation is leaving the NHS standing. New devices, wearables, diagnostic pills you can swallow, Star Trek gadgets – the science is fact but the health service’s ability to take advantage is largely fiction.
The waterfall of tech somehow evaporates before it gets to the patient and failure to use these advantages will be little short of criminal negligence.
I wrote the following piece which was published in last week’s Sunday Times (http://raconteur.net) and in the intervening time I’ve heard even more about the healthcare capabilities of technology and nothing about how we plan to use them for the masses.
Obviously, a policy announcement is not as sexy as revealing a power-packed device the size of a matchstick but I worry that government is not switched on. If they don’t fully embrace tech then the NHS is heading for a pathetic future and we will lose the potential health gains for the masses.

(Photo: world’s smallest heart pacemaker from Medtronic)

Here’s the article…..

Funereal gloom engulfs modern healthcare with most announcements about its future preceded by four jet-black stallions and trailed by a procession of solemn mourners.
So bad are the NHS’s vital life signs – a £34 billion funding shortage and chronic illness time bombs – that it feels just a matter of time before a sorrowing nation bids farewell to a dear institutional friend.
But there is light. If the ages of medicine have been characterised by such wonders as anaesthetic, antibiotics, robotic operating techniques and biologics, a new era of therapies is upon us and it is one that could breathe fresh life into the creaking body of healthcare. The Internet of Things may not have an august medical profile but it can be the power behind a health revolution.
The wearable technology of the fitness craze is about to mature into a procession of devices that can monitor a body’s vital rhythms and predict illness. Small patches on the skin and even ingested capsules will stream real time data to clinicians who can keep patients out of hospitals and GP waiting rooms.
Getting connected could save us a fortune and postpone the psalms and eulogies for the NHS.
The opportunity for change – and profit, with Cisco predicting the IoT could generate £48 billion of business over the next decade – is attracting some of the most creative minds in technology along with the big players such as IBM and Apple.
Their combined brain and corporate firepower could liberate the NHS’s choke points such as clogged waiting rooms and the sclerotic pathways of care full of delayed and disjointed appointments.
Crucially, it also has the potential to encourage the public to take ownership of their health and make the lifestyle changes that could stem the engulfing tides of diabetes and heart conditions.
The gadgets are ready, the IoT is ready. The number of smart phones in the UK will reach 43.4 million in 2017.
James Norman, former IT director at the Royal Liverpool and Broadgreen University Hospitals NHS Foundation Trust, believes that new data streams from devices linked to the internet will de-mystify health for the public and provide them with knowledge to live better lives.
“It is about keeping them out of hospital by keeping them informed. If a patient is involved in their care, evidence shows they have a better chance of a more successful and quicker outcome and their demand on services is reduced,” he said.

Analytics

Norman, now UK public sector chief information officer for global technology leadership specialists EMC, added: “We need different models of care with patients being treated at home, and greater use of technology around big data and predictive analystics to find the best care for patients.
“The NHS can change and change quite quickly but it is all about investing in the right skills. If you don’t invest in promoting the skills to analyse the data you might as well put it in a black hole – it is a waste of money.”
The use of tele-health systems – email and video link to diagnose and guide patients – is growing but the pace of change needs to accelerated so that the one million patients seen by NHS every 36 hours have easy access to monitors and devices to have a dynamic impact on mortality as well as systemic choke points.
“In five years time, hypertension will not be the silent killer it is now because we will know everyone who is hypertensive and we are at the $50 price per person for the device to monitor this so it will have a major impact,” said Thibault Sevestre, a digital innovation lead for Philips, which is developing devices and systems for heart conditions, diabetes and COPD.

Empower

“With the IoT and the right technology we are going to be able to offer diagnosis, risk profiling and the right support to take action for the masses very quickly. It means you intervene with 10 per cent of patients who need attention rather than those who are coming in for their scheduled visits yet are actually doing pretty well.”
Pilot Philips projects have returned a 30% reduction in both re-admissions to hospitals and to operating costs. Extrapolate that across the NHS landscape and the savings could hit £40 billion.
IoT devices are also predicted to punch a huge hole in the annual £300 million bill for unused medicine by prompting patients to adhere to regimes.
Dr Shahid Ali, a Bradford GP and Professor of Digital Health at the University of Salford, (http://www.salford.ac.uk/chsc) has already proved the benefit of connectivity at his NHS practice where 98 per cent of patients on a tech-supported programme reduced their blood pressure within three months.
“When you empower individuals rather than dictating to them, you begin to see that real change. We need to personalise services and be more proactive and introduce immediacy and they will respond,” he said.
“Getting the best from it requires cultural change. We are not at the tipping point yet but it has to come relatively soon, within the next five years.”
Michael Thomas, a healthcare analyst at A. T. Kearney, added: “There is a real opportunity for a healthcare revolution. It is the chance to engage with patients to tailor treatments and to make them take more responsible for their health.
“Healthcare is so much cheaper if delivered digitally and it is the best shot we have.”
Security of data is still a big concern along with the connectivity of NHS hospitals – one survey suggested only23 per had access to wi-fi.
At the sharp end, Tunstall Healthcare (http://www.tunstall.co.uk/what-we-do/telehealth) is delivering pioneering technology-based services to more than three million people around the world, employing smart hubs and sensors to help people live independent lives.
A project in Barcelona deploys a smart hub in homes to act as an emergency alarm, to detect activity levels and as a medication reminder, wirelessly relaying the data. It has generated a 20 per cent drop in call outs and residents enjoy an average one-year extra at home.
Steve Sadler, the Yorkshire-based company’s chief technical officer, believes that the IoT efficacy will be governed by the quality of the data collected as well as the sophistication of new devices and monitors.
“When it is there, the IoT helps us enrich that data so we can build better services,” he added. “The big challenge is for the technology not to work in isolation. It needs context and linking but get it right and we can replace the fragmented silos of healthcare and the future is very exciting.”

Clutching at straws?

press_gazetteThe campaign to replace headclutcher shots was covered by the influential Press Gazette. Here’s my article for them….. A campaign to revolutionise coverage of mental health issues is gathering pace as forces unite against the ‘head clutcher’ stock photo to illustrate fifty shades of mental anguish. Plucked from an image bank, they are the last resort when no other photographs are available or the people involved in the story decline to be pictured. But these images offend, stigmatise and stereotype, underscoring a general impression that mental health is something that leaves a person isolated and their head in a tightening vice. If every picture tells a story, these depict a remote landscape devoid of hope and understanding. The models usually look physically fit, are dressed in smart catalogue clothing with neatly cut hair that’s just been given a ruffle before they are told to ‘get into character’ by placing fingertips to temples or hands to the back of the head in almost an airline safety brace position – they’re called headclutchers for good reason. One in four of us will experience mental health problems in our lives and many more will be touched by it through families and friends. As a journalist regularly covering mental health stories, I’ve become aware of the distress and outrage these images generate. Mental health service users, relatives and experts are dismayed and feel they detract from public understanding. This is not just a print thing. Head clutchers can be found across all media with mainstream online and TV outlets, such as the BBC, regularly using them. The UK media’s approach to mental health has improved dramatically in recent years and we have emerged from the dark days when “bonkers” and “loony” were acceptable headline content. This editorial evolution is to the industry’s credit. But the head clutcher remains a hangover from a different age, a dead weight holding back progress. Don’t just take my word for it: The leading charities Mind, Rethink Mental Illness, Time to Change and service users agree. Martin Townsend, editor of the Sunday Express, has just taken the lead by pledging to stop using head clutcher shots (declaration: I write most of my mental health coverage for the Sunday Express). The obvious problem with any mental condition is that it rarely has a physical sign – plaster casts, bandages and crutches aren’t issued with diagnoses. Psychological bruising doesn’t colour the skin. So, the big question from picture desks juggling the daily meteorite storm of image requests is: “If not a head clutcher then how can we illustrate a story about mental health?” The answer is a new set of images that help portray mental health with a more positive profile. Skilled photographers should be able to produce a fresh gallery with a range of photographs that do more to capture mental health problems and their solutions. It’s not about shirking issues or neutering coverage – it’s about eradicating damaging stereotypes. But this is not just the responsibility of editors and picture desks. The mental health community has a role to play in being more willing to be photographed for editorial. Fears about public reaction and job prospects are obvious and it may be that we have not reached a societal tipping point where it has become acceptable to discuss mental health openly. Although the Government’s bold pledge to have No Health Without Mental Health may be a bit creaky, there is a definite mood swing. A lot of firms have employment structures that deal with mental health issues on a par with the physical problems that keep people off work. British journalism has been under unprecedented and unwarranted attack recently and although banning headclutcher images may not do much to quell the zealots, it is a perfect opportunity to display the compassion that underpins the trade. Cleansing the image banks of headclutchers may take time and a lot of goodwill but it is a responsible step to take and entirely in keeping with the progressive nature of journalism. Danny Buckland is a freelance journalist who has worked for the Daily Mail, Sun and Daily Mirror. He writes regularly about mental health issues and general health across national titles and websites and has become increasingly concerned about the use of ‘headclutcher’ images in print, on TV and on the web. He is part of a campaigning group that includes mental health charities, service users and other journalists who want to find a better way to illustrate stories about mental health.

Headclutchers head for the bin!

Congratulations and kudos to the Sunday Express and editor Martin Townsend for being the first British newspaper to pledge not to use the abominable headclutcher images.

The cliche stock photographs of a man or woman – normally from the middle-aged, middle-class fashion modelling clique – to illustrate depression and other mental health conditions by pressing hands to head and grimacing is pathetic and needs to be made history.

These outdated images reinforce stereotypes cause offence, endorse stigma and are from an age when mental health was regarded as something akin to sorcery.

For media outlets to still be using these library images is scarcely believable. There has been a lot of progress in editorial approach to mental health but the fossilised convenience of whistling up a headclutcher is unacceptable.

I don’t want to deny any actor or model precious work but, really, should you be posing for these photo shoots? I’m guessing they are tacked onto an afternoon of stock imagery work ranging from ‘missing the bus’ to ‘having a cold’ when the photographic team discover they have 30 minutes studio time left and say: ‘Why don’t we finish with a couple of headclutchers – they always get used….ok guys everyone into position….Lucy, just tilt you’re head a bit further forward and really press your temples….that’s it, that’s proper anxiety….Mike, ruffle your hair a bit more and drop the stoicism, we’re not doing ‘waiting at the opticians anymore’…that’s it add a bit of gel for maximum crumpled look and, voila, its bipolar…could even double as paranoia…good session guys, its a wrap.’

Outdated, out of order and, hopefully soon, out of the door.

The Sunday Express – declaration, I write for them – has been crusading for mental health for almost three years years, a rare sustained campaign to make society better. http://www.express.co.uk

Editor Martin Townsend and his team are committed to changing the mental health landscape and the decision to stop using headcluthers is typically bold. I hope others follow suit.

Time to Change – http://www.time-to-change.org.uk –  plus a range of organisations and campaigners are meeting to find alternative images – sorry Lucy & Mike – to make it easier for picture desks. But this is a landmark step so lets welcome it and work hard to eradicate headclutchers!

Bigger than Russia

burger-plush-earmuffsWhat has more than twice the population of Russia and an annual spend roughly the same of commercial giants Wal-Mart’s revenue?

Not your average quiz question but the answer is far from standard. It is global diabetes – currently at 371 million people and a annual bill of $465 billion. And those distressing figures are relentlessly on the up and by 2030, there will be another 552 million on the list.

The UK figure is 3.8 million with Type 1 or Type 2 diabetes with a projection to rise to 5 million by 2025

This is a landscape of opportunity for pharma but no amount of science and innovation seems able to stem the tide. Janssen have high hopes for their once-a-day pill Invokana which, as Jo Willey, Health Editor of the Daily Express, reports (http://tinyurl.com/q2jp5d2) will soon be available on the NHS.

But as fast pharma twirls its test tubes to come up with therapies, waist bands keep expanding. The trouble is that a huge portion of the public has now come to look on medicine as a way out of any ill. Get fat/drunk/pregnant/tired/old – there’s a pill. Successive health campaigns seem to land on people wearing burger buns for ear-muffs so we have to try as hard, if not harder, to cook up the psychological alchemy to help people eat sensibly and move a bit more.

Great then that Jane Griffiths, Janssen’s EMEA Group Company Chair, hit a balanced note at the excellent eyeforpharma conference in Barcelona. (www.eyeforpharma.com/barcelona) After a powerful and refreshing opening address about the need for trust and innovation in pharma, she told me that personal responsibility was an vital part of the health equation.

“We have to educate people on how to look after themselves a bit better – easier said than done – encouraging people to eat better and take more exercise,” she said. “Our job is to bring health to as many people as possible. Personally I need to lose a bit of weight and I know how difficult that is so I’m no different from anyone else in society.

“We need to look after ourselves and the answer cannot just be medicines, it has to be the whole thing.  I spoke about the concept of  Around The Pill this morning and that is take your medication but try to lose weight, try to get fitter. Medicines can’t be the answer to everything.”

She added that she had high hopes that Janssen’s new innovation centres and the deals it was signing with exciting biotech companies would bring in new science in the fight for better global health.

Anyone need a hand??

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The latest advance in prosthetics shows us both the marvels of medical science and how close we are coming to a tipping point where replacement body parts will become a cosmetic extra; a bit like botox. If you are worried about crows’  feet, sagging skin and  feel injections of botulinum toxin could do the trick and you can afford it then you are likely to pay for it.

Is it such a stretch to imagine that if you’re hand has a bit of arthritis and there’s a bionic hand on the market and you can afford it that you might pay for it?

With most medical advances comes a moral dilemma. Botox was principally used to treat muscle spasms around the eye and only got elevated to the beauty industry when a Canadian husband a wife eye specialists noticed that patients kept volunteering for more injections even though their condition had been cured.

Dennis Sorenson, who lost his left hand in a firework accident nine years ago, can now feel objects for the first time thanks to the Life Hand 2 that was fitted in the Gemelli Hospital Rome on January 26. Electrodes embedded in his arm carry signals from sensors in the prosthetic hand  to the 36-year-old Dane’s brain and will revolutionise his life.

Not only does it feel good, but it looks good. And it would be quite easy to imagine the ‘Want One Of Those’ brigade muscling in on the technology to enhance and prolong their lives. This, like other incredible step changes in medical science, could become almost a fashion choice at some stage. Far-fetched? Maybe, but does anyone really believe that there aren’t people with the money to do this?

Touch Bionics (http://www.touchbionics.com/products/active-prostheses/i-limb-ultra/) is marketing the i-limb ultra which has the staggering capability of a varied grip so the hand can clutch onto a heavy bag as well as perform delicate manoeuvres such as tie-ing a shoelace. It is the result of amazing talent, dedication and investment and the company is not alone in promising better, more responsive models in the future. All this will mean that people whose lives have been devastated by injury and illness can be helped.

But if technology can rebuild body parts and recreate basic human instincts to promise a better life, the output could easily and quickly jump from clinical need to cosmetic desire. In 10/20 years time, we could be meeting octogenarians with wrinkle-free faces and an iron hand shakes.

 

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