By DAVID GILBERT
A thought-provoking new book says ideas from those who’ve used the health service are too often ignored
ONE of the greatest resources of the NHS are the patients themselves, whose hard-won knowledge and experience at the receiving end of care could help health professionals to revolutionise medical care. Yet despite official talk of ‘patient involvement’, patients themselves are often ignored, sidelined and patronised. So argues DAVID GILBERT in a highly critical new book. A former patient, he writes from bitter personal experience . . .
WHEN Michael Seres had a bowel transplant in 2011 aged 42, he was only the 11th Briton to have the life-saving operation.
As an expert in marketing and product development, he was ideally poised to advise the NHS on helping his fellow patients to cope with the surgery’s gruelling and often mortifying consequence — life with a colostomy bag.
He even invented a monitoring device that could revolutionise their lives. Sadly, his efforts came to nought, shunned by an NHS that — it turns out — pays only lip service to the idea of learning from patients’ unique experiences.
In the u.S., however, his invention is transforming lives — but more of that later.
Since the age of 12, Michael suffered from severe crohn’s disease, chronic inflammation of the gut that caused his intestines to stop absorbing food or drink. The condition worsened so that by his late 30s he could be fed only intravenously, a slow process that took 16 hours a day. After Michael received his pioneering bowel transplant one might assume his cares were over. But he was facing an entirely new problem, as his bowel was now connected to a stoma bag — a pouch that collects faeces and is attached to an outlet (the stoma) on his stomach.
‘The bag was overflowing. I couldn’t do a thing about it,’ Michael remembers. Back at home he had to learn to drain the bag. He had to get extra sheets for his bed.
He faced the constant threat of wound infections at the stoma site caused by leakage, and of suffering dehydration when he lowered his liquid intake to stop such leaks. Both problems, which can affect up to 70 per cent of stoma patients, might cause him to be re-hospitalised. ‘My head was going: “This is just not normal, why does it need to be like that?” The transplant was supposed to give me a quiet life,’ he says.
His surgeon and other health professionals told him his experiences were normal and to get used to them.
DOCTORS OBLIVIOUS TO THEIR MISERY
BUT clinicians don’t have to live with the consequences of a condition or treatment. To them such ‘invisible’ problems are not what matters — not least because they don’t see their impact on a patient’s life.
It is such everyday experiences that equip people like Michael with knowledge that can turn them into advocates for patients’ true needs. ‘For the docs it was about survival,’ he told me. ‘But the only thing I could think about was this damned bag.’
Michael is one of a number of patients I have met who have tried to turn their experiences into a resource for the NHS to improve care. But ultimately they have failed, thanks to the NHS management’s habit of involving patients in committees only as a tick-box exercise rather than actually listening to them.
Michael began, like many others before, determined to improve matters — both for himself and patients in a similar position.
using his professional expertise he connected with 20,000 fellow stoma patients via social media and found many suffering similar private humiliations to his.
This led to a breakthrough idea while he was filling in regular spreadsheets that kept doctors informed about what he had eaten and how much his bowel had emptied.
He realised he could design a wireless-linked Bluetooth sensor on the stoma bag which checked how fast it was filling: ‘You could collect data and send it to hospital staff automatically,’ Michael says.
‘This might avoid readmissions for emerging problems. We can learn what comes out of the body and what to put back in.’
He bought a commercially built sensor and adapted it for use in stoma bags and found manufacturing partners to build the product.
Success beckoned. A commercial collaboration called Tech London Advocates gave him a ‘new innovation of the year’ award in 2014. The Science Museum featured his device in 2016 as part of a Patients as Innovators exhibition.
But then he had to deal with the NHS. Michael tried to get his product listed on the ‘drug tariff’ — a list of treatments and procedures that the NHS will pay for.
He completed a form but got a note back saying: ‘Where is your health economics model?’ The form had not asked for one.
To prove his case, he paid to build the product, trialled it on 80 patients and showed that it saved the health service 30 per cent in costs, thanks to fewer patients having to be readmitted to hospital (or suffering pain, fear and humiliation).
Michael heard nothing for six months. Then he was told they needed a clinical evaluation to show how they could use his invention on patients. Michael dutifully employed a clinical team to re-compile the data he had already submitted so that it matched the requirement.
Another year passed and he was encouraged to apply for an initiative called NHS Innovators as an entrepreneur needing support. He didn’t get on the programme.
Ultimately he was told he didn’t have to get on to the programme for his product to get on the tariff of approved products. But again his product was not listed on the new tariff. ‘I was told to apply again last year,’ recalls Michael. ‘I got another rejection. I said: “Forget it.” ’
WHY PATIENTS ARE A VIRTUE
MICHAEL found an American investor, and moved to california. where he has now built a team of 35. His sensor is now the world’s first smart care platform for stoma patients, with the first ever smart bag along the lines of his original vision.
As Michael believes patients are vastly undervalued, his company, 11 Health, which he founded in 2013, also coaches patients to act as ‘buddies’ for other patients in the u.S.
‘They go into hospitals, not to sell the product, but to see if they can help other patients by sharing their experience. It is not a patient takeover. This is collaborative work.’
Michael has harsh words for what happens in Britain.
‘The NHS continues to spout empty rhetoric about “patients being at the centre” and being at the forefront of innovation. It’s rubbish.
‘The patient’s role is not seen as useful. We are not valued. The system trusts only health professionals.
‘We patients effectively often have as many qualifications, as much knowledge and as many professional qualities, as the clinical professions — we just have a different set of skills. For healthcare to move forward properly, everyone has to have a seat around the table.’
I was like Michael Seres: After being ill, I too decided to try to change the healthcare system in the interests of patients.
In 1987, I suffered a catastrophic mental breakdown under the stress of my career as a global charity campaigner based in the uK. For six years I had chronic depression and anxiety as well as suicidal thoughts.
But with the support of a caring psychiatrist, friends and community, I began a slow journey back to normality. During this process I learned a wealth of things about people’s experiences in the system. It was equivalent to the best medical degree. Very different, but equal.
I realised patients can — and should — be health care leaders. We know what it is like to feel powerless and vulnerable, the effects pain and suf
fering have on lives. Since leaving hospital, I have worked for 30 years in patient and public engagement, often in the NHS.
URGENT NEED FOR A NEW VIEWPOINT
ON THE whole, the health service is systematically unable to value people like us — even when the official policy calls for collaborative working with patients. Having patients as partners means looking at problems differently. For example, if doctors and nurses discuss why people don’t turn up for appointments, they will most likely focus on people needing to take more responsibility. or they will say we should use text reminders.
What if the problem springs from inflexible appointment systems, people being too ill to negotiate buses, or the bus stops being too far away? In one example, a hospital clinic found that people weren’t turning up for scans. It spent £10,000 on leaflets warning people they would go to the back of the list if they missed appointments.
I was with the head nurse when one of her colleagues came rushing in saying, ‘We’ve got it all wrong,’ They had found most of those who had not turned up were scared of going into the scanning machine. So they talked to patients and changed things — music, soft lighting, better explanations . . . Voila! Attendance rates went up.
Recently a patient I interviewed said: ‘I have never been asked what I have learned during my suffering, let alone asked to bring that knowledge to the table.’
Instead, discussions about the NHS are held by a cartel of policymakers whose decisions get sieved through the corporate machine and emerge as gobbledygook.
Health professionals need to stop seeing patients as weak. The pain we have suffered is real. But what we had to face has made us strong. Adapted from THE PATIENT REVOLUTION: HOW WE CAN HEAL THE HEALTHCARE SYSTEM by David Gilbert, published by Jessica Kingsley on September 19 at £14.99. © David Gilbert 2019. To order a copy for £12 (valid to 24/9/19; p&p free on orders over £15), call 0844 571 0640.