This week I wanted to share this story written by Rohan Silva in the Evening Standard. It echoes exactly my own experiences with NHS AND giant cancer charities. There are so many people out there with incredibly innovative ideas that cost little to implement but the doors are shut in our face. Why is that when we all know how poor cancer services are in the UK. My experience is that this is much worse than what is portrayed in this article and is a scandal in the making!!
“It’s always great to come across a man — or a woman — on a mission. Michael Seres is one of those people. When he was 12 he was diagnosed with Crohn’s disease, an incurable bowel condition, and his health sadly deteriorated over the next three decades. By the time he was in his 40s — and after 20 operations — Seres suffered intestinal failure, and was constantly sick, so he had to be fed via a drip for 22 hours a day. As he later recalls: “For 18 months I was in hospital and would just see my kids on a Sunday.”
The only hope was a bowel transplant — but this kind of operation is incredibly rare and risky. At the time, only 10 people in the UK had ever had this procedure done — and tragically, only half of them had survived. In 2011, Seres was the 11th. When he woke up after surgery, he realised that he now had a colostomy bag, which collected waste from the body and had to be emptied manually.
Unfortunately, it just didn’t seem to work very well — the bag constantly leaked and spilled out. What’s more, it was really hard to tell exactly how much waste was coming out, which is important information for doctors to evaluate how you’re getting on. Seres decided there must be a better way of doing things, so he cobbled together some bits from an old mobile phone and a Nintendo video game machine — and used them to equip his colostomy bag with sensors so that it would beep whenever it was full.
So began 11 Health — a company that Seres founded to design colostomy bags with ever more sophisticated technology, so that they’re easier and less uncomfortable for patients to use.
That’s not all — Seres’ latest bags also allow doctors to monitor patients remotely and instantly analyse exactly what’s coming out of their body, and so work out what fluids and medicines they might need to put back in.
For 120,000 people in the UK living with colostomy bags, this type of technology could make a big difference to their quality of life — as well as to their health. And it has the potential to save huge amounts of money for the NHS — because at the moment, so many patients end up with complications due to the difficulty of managing colostomy bags, which led to big recurring costs for the health system. So far, so inspiring. But that’s where the good news ends — for British patients anyway. Because after he started his company in 2013, Seres spent three long and frustrating years trying to get his new colostomy bags used by the NHS — and got nowhere.
It was almost as if every part of the health system was designed to keep new innovations out — from incorrect information on NHS websites (which meant months wasted filling in the wrong forms), to emails and queries that went unanswered, or bureaucratic processes that wasted time and money in equal measure. So in 2016, Seres felt he had no choice but to move his company to the US. Within nine months he’d received regulatory approval and his colostomy bags were being used by patients in hospitals across the country. Sadly, there are lots of other examples of our health system being closed to new technologies that could reduce costs — and improve patients’ lives.
Take Sleepio, co-founded in 2012 by Peter Hames, a young British psychology graduate who found himself afflicted with chronic insomnia. Hames ended up partnering with an Oxford don named Professor Colin Espie, and started a company that uses software to help people get to sleep — without expensive or addictive drugs.
After five years talking to the NHS with no real results, Hames relocated to the US, where Sleepio is now used by more than a million people. But even though this approach worked brilliantly, they spent five years talking to the NHS with no real results, so Hames relocated to the US where Sleepio is now used by more than a million people, helping to improve their quality of life, and significantly reducing medical bills.
You see this kind of story again and again. The NHS is brilliant in all kinds of ways, and full of dedicated staff who work around the clock to save lives and look after patients. But when it comes to adopting innovations and new ways of doing things, the NHS doesn’t do very well — especially if you compare it to healthcare systems in other developed nations.
In the words of a government report on this issue: “The spread of inventions within the NHS has often been too slow, and sometimes even the best of them fail to achieve widespread use.”
This is obviously sad for patients, who can’t access the latest treatments. But at a time of growing financial pressure on the NHS, it also means our health system is missing out on efficiency savings that are needed more than ever.
Just this week, a new report suggested that rising health costs could see every household in the country paying an extra £2,000 a year in tax to keep the NHS financially viable.
It’s good there’s such a high-profile debate about the health budget — but it’s a shame that so little attention is being paid to how new technologies can help save costs, and improve the overall quality of care.
As a study by the NHS put it: “Unless innovations spread beyond pockets of excellence and into everyday practice, the NHS will struggle to produce the improvements in quality and productivity it requires.” It’s a fiendishly tough challenge to change the culture and processes of the NHS in this way. But then again, nothing worth doing is ever easy.
The NHS is amazing. But as Seres’s story shows, if our health system was more open to innovation and new technologies, it would be even better.”
I would like to thank Rohan for writing this article and would encourage the many of you out there that experience this issue daily to comment below. Thank you!!
Excellent article Chris – earnest wishes and we will catch up soon xxx
Thank you Christina, that would be great!
Recognise this. We’ve been talking for years ongoing with local NHS organisations, introducing cancer coaching as an extra support option for people affected by cancer in their recovery. We can show almost 600 evaluation forms from individuals who have benefitted from our coaching (not through NHS), who rate the coaching support with a 9.5 out of 10.
Yes I know, cancer coaching is not evidence based in a scientific way (the feasibility study we did with Southampton University showing that coaching works in this field doesn’t count as evidence), but I think we have gathered enough ‘real world’ evidence over the last 10 years. NHS doors will stay shut where we strongly believe that we can save them money as we make cancer survivors more resilient and able to care for themselves. The beauty of cancer coaching! We just keep going.
Tu guys! There are so many people in this position which is crazy when all we hear about is lack of funding. I know so many improvements that could be made to the system which would save money and provide a much better service. The leadership in this sector is weak and everyone is rewarded for failure. No one wants to change the status quo. The service we provide YoursimPal is totally free and although we help many NHS clients the organisation does not even share our work!! It is a total disgrace what is happening and the public should be aware. Keep up with your brilliant work.
To build on this: as many cancer coaches struggle with similar challenges, (working as an individual cancer coac ‘agains’ the large charities and NHS), it’s good to know that we are working on creating a voice of a growing group of cancer coaches by the setup of this Cancer Coaching Community. If you look abroad, it’s common to use coaching in health-care as it is based on common sense that people are usually sooner back to their ‘old selves’ or their ‘new selves’ with the support of a coach. Hoping the UK will follow soon!
I agree totally! It is taking time but I am starting to see the winds of change blowing the cancer cobwebs away. Keep doing what you are doing
Not hysteroscopy – but so relevant … When will the NHS start acting upon the ‘lived experience’ of thousands of intelligent, generous, grateful patients who just want to make things less painful, and safer for the next batch of patients …
Thank you! This is absolutely crazy when these resources are of little cost with a big impact. In the days of #innovation the big orgs in #cancer are embarrassingly poor at listening to the real experts! No wonder there is no progress.
This week saw the publication of the screening inequalities strategy. https://phescreening.blog.gov.uk/2018/05/24/mind-the-gap-phe-screenings-inequalities-strategy-launches-today/
Again I hear ‘we are working in partnership’ ‘We are doing everything we can’ It’s all bollocks. I’ve had conversations with Anne Mackie and Jo’s Trust about the , very cost effective, work I do to reduce screening inequalities.Are they interested? No. The top reason listed for screening inequalities? Poverty. So how do two people who are on hefty salaries get a handle on that? ‘We have created leaflets’ Because we all know leaflets are REALLY useful and influential. Do they know the rate of illiteracy in the UK? ‘This builds on our work from 2015’ So in 3 years you’ve now just produced the strategy document. 2,700 women have died from cervical cancer since then. How many more will die before the ‘strategy’ filters through. Just how much in meetings, time and no doubt funky creative meetings did the strategy cost to create. Yet, when I asked for £50 travel expenses when I was invited to speak at a School Nurses training session (they are the ones who deliver the HPV vaccine) I was told no. Funny, because I’ve just had travel, accommodation and conference fees paid for PHE conference. Way more than £50 but hey I guess that money will tick a box to say ‘Patient engagement’ though will not directly increase screening rates AT ALL. Rant out.
Thank you for sharing the above example, and I know how frustrated you must feel after all that work! I know all of this is true because I experience it myself daily. I have spoken personally to two cancer giants recently, who are not keen to see their names all over Twitter because of their poor work. Three weeks on and I am still waiting for someone to come back to me 🙂 Apparently they consider my complaint very serious.
Regarding your issue about receiving expenses. I have refused to do any NHS speaking unless I get paid. It is not about the money but about being valued. To be honest, even when they do organise any money it takes so long to come, it is embarrassing. In most cases these conferences are a giant PR exercise, after which nothing changes and they are already organising next years!
It is a disgrace the way cancer care is run in this country. I have met all senior politicians and all UK charity CEOs. Unfortunately there is a very cosy cartel at the top being well paid for kicking the subject of cancer into the long grass. How are these people judged? We will still be talking like this in 2020 when most of these guys will have moved on or taken their pension.
Until there is meaningful engagement with patients nothing will change!!
You say the NHS is amazing. I’d like to say it’s not the NHS, but the people who work in it. The service itself creaks along, and as your story shows, there is no will to change – even if something is better or cheaper. As a cancer survivor, I go abroad to get treatment for long-term side effects, and am given sensible, practical advice is consultations that allow time to talk through options. In UK I can get a rushed consultation which results in me being given expensive drugs, and having to return because they don’t work. Consequence is I have a large drawerful of drugs, because I can’t bear to throw such expensive commodities away. I’ll pass them on to any Third World doctor who wants!