Matt Eagles – The man who doesn’t let Parkinson’s stop him. Ever.

Living with Parkinson’s disease from the age of eight certainly hasn’t stopped Matt living life to the full. Over the years he’s jumped out of planes, abseiled town halls, photographed Team GB at the 2012 Olympics for ESPNSoccernet and is now working as a patient engagement lead to pass on his experiences of living with Parkinson’s.

We meet Matt at his home, he sits opposite us talking about his school days. “The head teacher of my first school, Headley Cleaver, first noticed me falling backwards in assembly,” he said. At the same time he recalls having trouble at swimming lessons where his legs would just start to sink. Matt was referred to his GP Dr Fox who got the ball rolling and sent him to the Booth Hall Children’s Hospital. However it was a chance encounter at the local infirmary where the breakthrough was made. It was there that Dr Liversedge suggested to Matt’s parents that he try Sinemet, a drug for Parkinson’s disease. The tablets seemed to work, and more importantly from Matt’s perspective he was given 50p by the doctor for taking this bold step to try them out, unfortunately it didn’t stop Matt having some tough times at school.

“One of my teachers called me ‘sparrow legs’ another teacher called me ‘dead legs’. In my first year of senior school, I was dragged into a class by fellow pupils and the teacher forced me to lie on the floor under the black board for the whole lesson to, in her eyes, recover. I couldn’t get up.” One way Matt got around some of the torment was to get involved in everything he possibly could and because his legs were weak, his upper body got really strong. He said, “I used to arm wrestle the strongest lads in the year. There was only one of the rugby lads who ever beat me and he went on to become a professional rugby player, so that used to get me a bit of street cred.”

Over the years Matt has tried lots of drugs to control his Parkinson’s. He used to have to inject himself each day inserting a canula into his stomach and then attach a syringe driver which administered the toxic drug intravenously. The needle remained in place all day until he went to bed. “One of the drugs would work like Viagra,” he said, and would cause extreme startle, making him jump out of his skin when the phone rang, which was very awkward in the telesales arena where he worked. Another one of the drugs caused a potentially catastrophic Impulse Control Disorder to appear. “All of a sudden I started to gamble heavily and lost thousands of pounds. I realised something was seriously wrong and spoke to my consultant who took me off the treatment immediately. Pretty much over night the gambling subsided and the risk taking behaviour disappeared.” Just over ten years ago Matt had deep brain stimulation. He now has two electrodes that go into his brain and are powered by a battery in his chest. The implants control his stiffness and rigidity and can be remotely adjusted depending on the severity of the symptoms.

The symptoms are still there though and can become more exaggerated with emotions or mistiming drugs, but they are a lot more manageable than they used to be. He was in hospital for nearly three weeks and it changed his life. “Simple things,” he says, “like before the treatment, at night I used to roll out of bed and pee into a bottle on the floor because I couldn’t make it to the bathroom. Now I can stand up and walk to the toilet.” Matt worked in publishing for over 20 years and during that time he started writing football match reports for the local paper. “It combined two of my loves… writing and photography.” Photography certainly isn’t the first pastime you would think of for someone with Parkinson’s but this hasn’t stopped Matt. Back in 2012 he got an amazing opportunity through ESPNSoccernet to photograph the football at the 2012 Olympics. He said, “I’ve never at any point thought I’ve got Parkinson’s so I can’t do this. I just worked out exactly how I could capture what I’d need. So I got my press pass and followed Team GB around, photographing both men’s and women’s games at Old Trafford, Wembley and the Millennium Stadium. It was amazing.”

Unfortunately he was made redundant recently and found it incredibly difficult, despite his experience, to find a job. “I didn’t want to think it, but the fact that I talked a lot about my Parkinson’s and the work I’d done around it on my CV didn’t help me at all.” He continued to do what he enjoyed, writing and photography, but as well as match reports he started to write about his experiences with Parkinson’s. He was sharing his experiences through Parkinson’s UK and on social media and it wasn’t long before he’d written more and more articles and was being interviewed a lot. He said, “I’ve appeared on Sky News, Sky Radio, daytime TV, Five Live, Radio Wales, World Service and I was featured in the Independent, Mirror, Sun, Express.” He is now working as a ‘patient engagement lead’, and an ambassador for Medtronic who manufacturer what Matt calls, ‘My brain pacemaker’.

We talked some more about social media and the ability to talk to people and share experiences. He said, “Once, I was making a sandwich, I’d managed to spread the butter without wrecking the bread, I’d managed to cut the cheese without chopping my fingers off, I put the bread on top and then had a twitch and knocked the sandwich straight into the dog’s water bowl. I was gutted.” He dealt with it by sharing the moment on social media and it instantly started a conversation with people who had similar instances. “Sharing a frustrating moment allows me to laugh at it rather than get annoyed. I enjoy sharing my experiences, ultimately it helps me cope. I hope it helps others too.”

Because Matt has had Parkinson’s from an early age, he’s had no choice but to live with it. He said, “I’ve not really known anything different.” Living with Parkinson’s every day is different; some days can be great and others can be really dark and it’s this breadth of experience that he can share with others, people who are new to the condition who are trying to find ways of dealing with it. “It’s lovely to get feedback from people saying they’ve heard me on the radio or TV and they’ve felt less alone. I’m not afraid to tell the world I’ve got Parkinson’s. I can’t change what’s happened to me, but I can embrace it and live the best possible life I can.” He also spoke fondly of his wife Viv who he married back in 2014 saying, “She is my rock and keeps me on the straight and narrow but encourages me to do everything I possibly can. We make a great team.”

Matt’s attitude to life is astonishing. He talks about jumping out of a plane, abseiling from the top of town halls, photographing at the Olympics and at a Kaiser Chiefs’ gig and laughs off the idea of being an inspiration to others saying, “I don’t do things to inspire people, I do things because I want to. I set myself goals and work out ways to do them.” By speaking out, Matt is letting people know that having Parkinson’s can be normal and that they don’t have to stop enjoying life. He said, “I feel pain every day and at some point every day my legs don’t work so there will be stuff I can’t do, but I never forget I’m blessed and I try to live life as fully as I can.”

www.instagram.com/matteaglesphotography

Learn more about the #HealthcareHeroes at: www.healthcare-heroes.com

Steve Watts – The heart patient that ran a marathon on Everest

At age 63, Steve Watts ran one of the world’s toughest marathons to raise money for charity. As if that’s not impressive enough, he was the first man to complete the race with a pacemaker.

Steve vividly remembers an early project in school in 1963 when he was ten, learning about Hillary and Tenzing conquering Everest.

He even remembers telling his brother, “One day me and you are going to follow in the footsteps of Hillary and Tenzing.” Then he paused, smiled and said, “More about that later.” Steve then took us on his life’s journey from that first school project culminating in his recent trip to the Himalayas with his brother Peter, sister-in-law Carla and son Matthew.

Steve Watts is a runner, a fundraiser and a storyteller. He talked about, his time in the army and his job as a courier and salesman, but it was his running that had caught our attention. He said, “I remember reading about a chap called Joss Naylor who was a sheep farmer and fell runner, and amongst other amazing records, ran 72 lakeland peaks within 24 hours.” Steve was fully animated talking about Joss. He wrote to him and asked to meet him at his farm, saying he had a painting of Joss he wished him to sign. Naylor agreed and Steve went to Wast Water to meet him. It was the first time he’d been to the Lakes and standing at the bottom of the brooding grey Wast Water looking up to Joss’ farm, he instantly fell in love with the place. Joss came off the fell, took one look at Steve who had just finished a cigarette and said, “Thee lad, needs to stop thee smoking, lose some waaait and get on thee fells.” From that point on Steve packed in the fags, cut down on the booze and started fell running. Three years into his running he attempted the Bob Graham Round with a friend but pulled out with severe cramps after 12 hours. The run gave Steve a taste of the immense challenge of top fell running. He was hooked. He attempted it the following year and made it….42 peaks and 72 miles within 24 hours. He picked up his Bob Graham certificate from Joss Naylor, which thrilled Steve and brought a wry smile from the sheep farmer. An article about his experiences appeared in a local newspaper and shortly after that he was contacted by Alan Jones, a work colleague. He asked Steve if he could help raise money for one of his neighbour’s children who was receiving treatment at Booth Hall Children’s Hospital and needed their own ventilator machine. So Steve decided to complete a 58-mile run with his dog. They did the distance in just over eight hours raising more than three thousand pounds.

A number of months later Steve’s son Matthew was rushed to Booth Hall Children’s Hospital. While there Steve spoke to the consultant who remembered him from his previous fundraising feat, she asked if he’d be interested in helping them raise money for the scanner appeal. He agreed to help and was given a two-year secondment from his current employers to help raise the target of £1 million to pay for the first children’s CT scanner. He threw himself into the role and organised a number of large scale events. One such event called ‘Children running for Children’ saw over 7,000 children take part in a family fun run that was witnessed by thousands of people. The event raised over £130,000. In just 18 cram-packed months they managed to hit that amazing target. After reaching the total, the research and development team at Booth Hall asked Steve to stay on as the fundraising and events manager. While in the role, he set up Krypton Factor Assault Course events, ran the London Marathon and climbed Kilimanjaro as well as many other achievements.

Steve spent a number of intense years as fundraising manager for the research and development team at the children’s hospital, but decided to step back for a while concentrating on family life and, as he said, “get a normal job”. One day though, in his late 50s he fell ill and subsequently had to have a pacemaker fitted. Lying on the medical table he said, “All I could think about was my brother who’d died of a heart attack only four years earlier.” He thought he would never run again, but with excellent medical support he slowly made the road to recovery. Steve said, “The pacemaker gave me another chance, a new lease of life. This is where Everest comes into the story. It was my 60th birthday and my younger brother Peter gave me a birthday card with a few numbers inside.” It turned out that these numbers were the coordinates for Everest’s base camp. The birthday present was for both of them to go to the base camp and then summit Kala Patthar in the land of the giants.

After seven wonderful days of hiking they approached Periche, a village before base camp to see a helicopter deliver two body bags and an injured person. As soon as they were dropped off, the helicopter headed back up the mountain. “We knew something terrible had happened. An avalanche buried 16 Sherpas on Everest that day making it the mountain’s worst tragedy.” However, the sherpas in charge of Steve’s group, decided to take them to base camp and then to the summit of Kala Patthar. “The journey up was tough, my brother nearly didn’t make the summit, but those few days gave us a whole new respect for the people that earn their living up there in the land of the giants.”

What happened at Everest really affected Steve. After returning home he said, “I couldn’t stop thinking about the families that would be hugely affected by the loss of a loved one and the consequent lack of income.” This was when the fundraising bug re-emerged. “I promised to return and do the Everest marathon, raising as much as I could for the Himalayan Trust UK and the British Heart Foundation.” So Steve and his son Matthew set about raising money and organising fundraising opportunities under the name, ‘Heartbeat for Everest’. At 63 he would become one of the oldest people to complete the marathon as well as the only person to complete it with a pacemaker. Over the next year Steve spoke at lots of schools and in local papers talking about his experiences at Everest and his forthcoming record breaking run, and his aim to raise thousands of pounds for the two charities.

Eventually, Steve and his family went out to the Himalayas to focus on the task at hand and purely by chance he got chatting to a lady in his group, who apparently worked for the company that made his pacemaker, Medtronic. She spoke to her firm on her return and Steve was invited to fly out after the trip to Minneapolis to speak at Medtronic’s 40th anniversary and to also meet the team who made his pacemaker. Steve flew out with his wife to Minneapolis and said, “To actually meet the people who have given me a new lease of life was amazing, I felt truly blessed.”

Also on the trip whilst coming back from base camp with his family, Steve’s son Matthew noticed something which disturbed them all greatly. “Returning from base camp we were taking some pictures of Everest when Matt noticed a body lying in a gully below.” Steve ran down to discover a porter hunched over in the foetal position, suffering from hypothermia. They managed to get him out of the gully and back to the village further down the valley. Steve said, “When the porter came back to his senses, his first thoughts were to get back up the mountain and grab the load he was carrying. Without that he wouldn’t get paid and couldn’t feed his family.” He was in no state to go anywhere so Steve talked to a number of marathon runners in the camp, they managed to get some money together to pay for the porter’s medical bills and enough to see him safe so he didn’t have to get back up the mountain to fetch his load or work for a month.

So after meeting someone from Medtronic and helping to get a porter to safety, Steve was finally ready to face the toughest marathon in the world. He was focused on finishing and started at a comfortable pace arriving at the half way point 40th out of 170 runners. He said, “I was three and a half hours in when I fell and bust my toe. The front of my trainer had ripped off and my big toe was in a bad way.” He couldn’t run anymore and had to limp at times but he wasn’t one for stopping and completed the race in just under ten hours. Asked why he would even think about running a marathon at his age with a pacemaker he said, “Life isn’t a rehearsal. I’m truly blessed with the support of my son Matthew, daughter-in-law Helen and wife Christina. You’ve got to grasp every opportunity, and when you can, get out on these hills.”

These three events… having a pacemaker fitted, witnessing the tragic events at base camp and helping save a porter’s life seemed to have re-ignited a desire to help and to share his story. Steve said, “There is a potential to do things with Medtronic but really my focus at the moment is ‘Lakeland Walks and Talks,’ which is something I have set up and I truly love doing it.” He wants to spread his enthusiasm for the hills and inspire young people in particular by taking them out on the fells and sampling the majesty of it all. “Whether those young people are in schools, whether it’s an individual, or groups or families… if I can inspire people to get out in the great outdoors and experience life then I’ll be a happy man.”

www.lakelandwalksandtalks.com

Learn more about the #HealthcareHeroes at: www.healthcare-heroes.com

Prof. Paulo Edwardo Stanga – The man behind the world’s first bionic eye transplant

In July 2015, Professor Paulo Stanga conducted the world’s first implant of a bionic eye. The pioneering technology means that patients who are completely blind are able to see for the first time, using technology which sends wireless signals between the brain and an implant in the retina.

Professor Paulo Stanga conducted the world’s first bionic eye transplant in July 2015, marking the beginning of a new era for patients with sight loss.

Over its 200-year history, Manchester Royal Eye Hospital has been home to a wealth of pioneering individuals who’ve pushed the boundaries in eye care. One such individual is Professor Paulo Stanga, who carried out the world’s first implant of an artificial retina, popularly known as a ‘bionic eye’, in patients with Age-Related Macular Degeneration (AMD).

Professor Stanga is a Consultant Ophthalmologist and Vitreoretinal Surgeon at Manchester Royal Eye Hospital. He has travelled the world and held jobs in some of the busiest cities, from Buenos Aires, to New York, London, Liverpool and now Manchester. We meet him at a room in the NIHR/Wellcome Trust Manchester Clinical Research Facility surrounded by a number of specialist retinal imaging devices and looked on by a number of printed eyes displayed on posters attached to the walls. Professor Stanga became interested in pioneering research early in his career, saying that he wanted, “To challenge established concepts and develop new ways of treating patients.” Those early days were busy and demanding. He spent the early ’90s in New York working for Professor Harvey Lincoff who was one of the most famous retinal surgeons of his time. Paulo was working long hours in the week and also at weekends. He smiled as he said, “I even had to bring my wedding forward and delay my honeymoon in order to hit a deadline two days after I was married. My wife still reminds me now that we haven’t had a honeymoon.”

After New York, Paulo worked in London and Liverpool before settling in Manchester in 2003. “The opportunity was brilliant, the role gave me a chance to set up a team around my research and push on with pioneering trials.” After introducing, amongst others, new imaging and retinal laser technologies as well as treatment techniques into clinical care, in 2008 Paulo started setting up trials with the bionic eye. He worked closely with a US company called Second Sight who produce the Argus II Retinal Prosthesis System also known as the bionic eye. The initial trial focused on the implantation of the bionic eye for complete blindness in Retinitis Pigmentosa. He subsequently set up a pilot study of the bionic eye system in Dry AMD, one of the most common forms of severe loss of central vision, which affects 20-25 million people worldwide and 44,000 more people per year in the UK. The condition causes an impairment of the central vision resulting in people being unable to discriminate faces, read or drive. The world’s first surgery on a patient with this condition was completed by Paulo in 2015 on 80-year-old Mr Flynn, whose central vision had completely disappeared. The procedure involved attaching the implant within one of Mr Flynn’s eyes. This implant receives its visual information from a miniature camera mounted on glasses worn by the patient. The information is then transmitted wirelessly to a receiver that sits on the wall of the eye and from which the information is transferred to an array of electrodes that sits on the surface of the macula where they stimulate the remaining cells and replicate the patterns of light and darkness for the brain. The surgery was a huge success and less than two weeks later Mr Flynn was able to detect patterns of horizontal, vertical and diagonal lines on a computer screen using the newly acquired central vision provided by the implant. Paulo said, “Over time Mr Flynn is learning to interpret these patterns of light and darkness and regain some central visual function.” The implant itself cannot provide any detailed vision but it can help patients to detect distinct patterns such as door frames and shapes without having to rely solely on their peripheral vision. Paulo praised all patients who are taking part in the trial.

“We are learning because of the courage and generosity of the patients taking part in this trial. At the moment there are only five patients in this trial but their involvement now means that in time we will be able to enrol others and this way help a lot more people. We are very excited and feel very positive about this trial. Our patients are the first ever human beings to experience the combination of their natural and residual with artificial vision. This successful integration of these two types of vision will hopefully pave the way for the treatment of many other causes of blindness”. Paulo told us that he still vividly remembers when one of the first patients with Retinitis Pigmentosa to be implanted in 2009 told him that, “Over Christmas he had seen fireworks for the first time in 30 years and also the glow of the Christmas lights, he could even make out his grandkids running towards him. These are the stories that drive us.”

These unique trials are only taking place through the Manchester Vision Regeneration (MVR) Lab at the Manchester Royal Eye Hospital and NIHR/Wellcome Trust Manchester Clinical Research Facility, as well as an independent Retinal Clinical-Research Fellowship Programme which Prof. Stanga set up in 2010 to contribute to this and other research. He said, “I couldn’t do any of this without the support of my team and the understanding of my family.” His fascination with the eye and his continued interest in how high end technology can help the medical industry allows Prof. Paulo Stanga to seek out solutions that haven’t been trialed or even thought of. He’s building a strong team and continues to treat patients with career defining surgery, improving the vision of many and in some cases restoring some visual function and helping patients to live more independently.

www.cmft.nhs.uk/royal-eye

Learn more about the #HealthcareHeroes at: www.healthcare-heroes.com

Neesha Gobin & Catsou Roberts – The artists injecting life, colour and meaning into sterile wards

This week’s #HealthcareHeroes are Neesha Gobin & Catsou Roberts. They are the inspired people behind Vital Arts. An organisation that is transforming our hospitals by delivering arts projects for the well-being of patients, staff and the wider hospital community. The team work in partnership with medical staff, artists and cultural organisations to devise and deliver therapeutic creative programmes – workshops, artist-in-residencies, exhibitions, installations and public art commissions – that support medical goals; enhance patient well-being; provide continual professional development opportunities for staff; and create stimulating and uplifting spaces for patients, staff and the wider hospital community.

A sterile labyrinth of corridors and clinical rooms void of personality make hospitals scary places to visit for the majority of people. Vital Arts are looking to change that experience by transforming spaces, engage patients and make hospitals a better environment for all.

Vital Arts deliver arts projects for the well-being of patients, families and staff. We meet Catsou Roberts, Director and Neesha Gobin, Arts Manager in a hospital that has three towers, the highest of which has 14 floors, with 675 beds, 110 wards and 26 operating theatres. This is a lot of space to fill with work by professional artists, and it is just one of the five hospitals that Vital Arts deal with.

Walking through the revolving doors at the entrance we are hit with a flood of colour in geometric shapes reaching up the walls on tiles designed by renowned artist Morag Myerscough. The space immediately feels brighter, more welcoming and a whole lot more interesting than any hospital we’ve ever been in. Neesha greets us at the entrance and explains, “Because this is the Women and Children’s entrance we wanted to create a space that is bright and welcoming and Morag’s work does just that.” Vital Arts, established 20 years ago, is charitably funded and raises money for all its projects. They set out to commission site-specific, permanent artwork that has a real engagement with the architectural space, creating something unique for each designated area.

We meet Catsou, who is waiting for us in the Children’s Imaging Department eager to show us the latest installation by Tatty Devine. “Tatty Devine make jewellery that blurs the boundaries between art and fashion so commissioning them to make their first work for an architectural context was exciting.” The installation includes thousands of individual acrylic pieces carefully arranged to create kaleidoscopic compositions that catch the light like only jewellery can. The installation includes thousands of individual acrylic pieces carefully arranged to create kaleidoscopic compositions that catch the light like only jewellery can. The numerous artworks commissioned by Vital Arts can be seen in the corridors, reception areas and importantly the treatment rooms breathing colour and life into an area that could otherwise be intimidating for children. Neesha says, “As soon as we put up the artwork, the staff were delighted and told me it was lovely to see how the space was transformed. They responded to the vibrancy of it, as did the patients and their families who enjoy its playfulness.”

Vital Arts are the link between the artist and everyone in the hospital. They work closely with clinicians, staff and patients to ensure the best outcomes. Catsou said, “It’s their space and they need to feel an affinity with the art, just as we aim to reach patients using the services who might not otherwise have access to contemporary art.”

The selected artists come and spend time in the hospitals giving them a greater understanding of how the patients and staff use the space. For example, Jacques Nimki, an artist commissioned by Vital Arts, went to the children’s A&E several times in the middle of the night to understand the energy of the environment before beginning his work. Neesha said, “We are always thinking about the demographics of who will be viewing the artwork, how and when they will be seeing it. We consider whether they will be walking through a corridor, sitting in a waiting room, lying down and looking at the ceiling, and so provide artwork to be seen in various ways.” We catch a lift up to another children’s area, where the space is vibrant, playful and brilliantly tailored for the audience. In the radiography rooms there is art set into the ceiling so patients receiving treatment have something to focus on when they have to lie still. On this site alone Vital Arts have nearly every floor covered, which is astonishing. One of the great things about the artwork is that you forget you’re in a hospital; the cold, sterile, empty corridors and rooms you associate with them are gone. Catsou explained, “Unlike museums that have opening times, this building is never emptied of possible viewers. The art is beaming from the hospital walls 24/7. I love the fact that at any time of the day someone is likely to be looking at a great work of art, and quite possibly, enjoying an eye-catching and mind-opening experience.”

As well as the art installations they also run a Patient Participation Programme which provides year-round opportunities for patients to engage with music, dance, poetry, and other arts. One particular programme with the London Symphony Orchestra enabled singers and musicians to perform to patients. In the neonatal ward for example, the musicians would sing lullabies to babies in incubators. Neesha said, “The nurses noticed the babies’ heart rates dropping, their oxygen rates rising and the parents feeling more relaxed. For just a moment or two, a little calm is brought into their lives, and it makes a noticeable difference.” This participation programme is partly funded by the sale of limited edition works which Vital Arts produces with some of the artists—often as a result of an artist-in-residency—allowing the team to continue delivering new ways of patient interaction. Another successful project involved Trinity Laban Conservatoire of Music and Contemporary Dance, who encourage movement in patients. Neesha said, “One visiting daughter had not seen her mother engage in any form of activity since her admission into hospital. Yet on this occasion, her mother was singing and clapping along to the music played by the dance artists and both mother and daughter were visibly uplifted.”

Catsou added, “Our priority is to assist clinical aims and enhance the hospital environment, and this is an effective way to do that—as attested by our physio colleagues, and supported in many recent studies on arts in healthcare.” It’s clear to see the team are passionate about what they do. Catsou says, “I want to raise the standard of what art can be in hospitals.” They also want to act as a beacon encouraging other hospitals to be courageous, ambitious and discover new artists—not to just reach for off-the-shelf solutions by recycling artists who have already made work in hospitals. They are focused on delivering innovative projects, constantly pushing themselves and the artists to create work that is fresh, interesting and meaningful.

There are hospitals around the world with empty walls, harshly lit clinical wards and intimidating operating theatres. They are places of work for professionals worldwide and are visited by millions of patients each year. What Vital Arts have done is special, it’s visionary, it opens artwork to a new audience that cleverly responds to the space it occupies and improves the patient experience within. Vital Arts have shown how some imagination can transform hospitals, making them less frightening and more uplifting. The team aren’t motivated by money, rather, they are interested in how they can offer life-changing encounters with significant contemporary art. What they do is create unique spaces which have a positive impact on everyone who spends time there.

www.vitalarts.org.uk

Learn more about the #HealthcareHeroes at: www.healthcare-heroes.com

Tal Golesworthy – The boiler engineer that repaired his own heart

This week’s inspirational Healthcare Hero is Tal Golesworthy, a former boiler engineer — he knows piping and plumbing. When he needed surgery to repair a life-threatening problem with his aorta, he mixed his engineering skills with his doctors’ medical knowledge to design a better repair job.

He has now founded his own company that funds the research and development of devices that will help people with aortic dilation avoid major surgery and lifelong drug therapy.

“I’m being unwittingly emotionally blackmailed by the patients.” Tal bellowed with a wry smile on his face and a subtle shake of the head. “We’ve helped 78 people with the syndrome and have over 300 years of trouble free, post operative success, but still it’s like wading through thick mud trying to get the NHS to use the product.” But it’s these 78 success stories that keep pushing Tal every day, knowing the positive impact his invention can have.

Tal Golesworthy is in his 50s, he’s an ageing rocker, a former combustion research and development engineer who has found himself in the medical world innovating new products because of a syndrome he’s had from birth. Tal has Marfan syndrome, a genetic disorder that can cause problems with eyes, skeleton, and in Tal’s case, his heart, more specifically his aorta. As the heart pumps blood around the body, the aorta stretches to accommodate the blood flow. In most cases it relaxes back to normal size but in Tal’s case it doesn’t, gradually enlarging over time. He’d known about the syndrome from an early age but a genetic study in 1992, found his aortic root diameter was significantly above the norm. This started an annual review process and in 2000 he was told the time had come to consider pre-emptive surgery.

Tal scoured the net and sought advice from the best doctors and surgeons in the business. He wasn’t happy with any of the options available. “Traditional surgery dictated I have my chest cut open, a metal valve and prosthetic aorta inserted to replace my own aortic valve and aorta and then live on a blood thinning drug for the rest of my life. No thank you!” Tal’s research and development background meant he was well equipped to handle a medical project, so he set about researching everything there was to know about Marfan syndrome, the aortic valve and the complications of this medical procedure.

He approached the project from an unusual angle. He thought that if a hosepipe is bulging, then you simply get some insulation tape and wrap it round the outside of the hosepipe to stop it bulging. So rather than replacement, his idea was to protect the current aortic root by surrounding it with a medical grade mesh. What started out as a side project became his full-time job and he set up a small team which over four years developed the various stages of imaging, CAD modelling, manufacturing, cleaning and sterilising the implant until they were happy to proceed.

Part of that team was Prof. Tom Treasure, then at Guy’s Hospital London, and Prof. John Pepper, of the Royal Brompton Hospital, London. It was John who would be carrying out the first surgery on Tal. Tal said, “I had to trust this man with my life; I had total faith in John, I was completely happy with the implant, but that didn’t mean I wasn’t completely petrified.” The operation was a success, the implant fitted and there were no immediate complications. The breakthrough had happened, a procedure that took half the time of the current one, one which meant Tal wouldn’t be reliant on debilitating drugs and would allow him to go on and live a full life. He was ready to shout from the rooftops about this amazing new product that could save the NHS time and money and decided his time would now be better spent getting this product to market, allowing people to go on living life drug-free, through his company Exstent.

The operation has been completed 78 times since that day, the youngest patient being 11 years old, the oldest, 56. There are currently over 30 publications written about the procedure in major journals, Tal talks a lot at medical conferences and his TED talk has had over one million hits. However this surgery relies on GPs and cardiologists offering the implants. “For me it’s more than 12 years post op and we’ve only done 78 patients. It’s a joke.” When you consider that with this cardiac problem there are approximately 2,000 operations a year around Europe that could benefit from the implant, it is easy to see Tal’s frustration.

This frustration is shared by a lot of other inventors trying to break into a tough medical arena. He said, “All I set out to do was to fix myself. I didn’t set out to change the world, but I’ve found myself in a position where I’m trying to change a part of the world that is very resistant to change. If I had any sense I’d walk away, but it seems I don’t have any. I can’t abandon those patients who want to exercise their choice of treatment.” It’s easy to see the desire Tal has, the passion that bursts out of him when he talks and the fact that his job isn’t a job, it’s a mission to realise the potential of an implant that can make such a positive impact on people’s lives.

Watch Tal’s TED talk here.

Learn more about the #HealthcareHeroes at: www.healthcare-heroes.com

The patient who educates over 76,000 doctors, nurses and fellow sufferers about his condition

Healthcare Hero Michael Seres has a remarkable story. At age 12 Michael was diagnosed with Crohn’s disease. Over time this condition continued to progress and his health deteriorated resulting in him losing a large amount of his small intestine. By age 40, where the average person has around five meters of small intestine Michael only had around 70cm.

Michael’s only option was to undergo surgery for a small bowel transplant which came with huge risks. Not only were the odds of survival low, but the body may reject the new transplant.

It was during the time that Michael spent recovering from this surgery that his story becomes even more noteworthy. Not only did he use the opportunity to educate tens of thousands of people around the world, he also developed a new piece of technology to improve the way he and others are monitored during recovery.

After undergoing life threatening surgery, the road to recovery gave Michael a focus and an opportunity  to help thousands of patients worldwide.

The average person has about five metres of small intestine inside their gut, continually digesting food and absorbing nutrients and minerals. By the age of 40, Michael Seres only had about 70cm of intestine left. He had suffered from intestinal failure, was constantly sick and had to be fed intravenously for 22 hours a day.

Michael was diagnosed with Crohn’s disease in 1972, when he was 12. Crohn’s was considered rare in those days. It is an inflammatory bowel disease (IBD) that can affect any part of the gastrointestinal tract from the mouth to colon. Symptoms include abdominal pain, persistent diarrhoea and tiredness. His teenage years were dominated by how many times he went to the toilet (usually 10 a day). In order to control the disease he was put on powerful drugs and monitored constantly. Over the years the drugs became less effective and the Crohn’s got worse. As a result Michael had to have parts of his small intestine removed. His first operation was when he was 14 and 20 operations later Michael was at the point of intestinal failure and needed intravenous feeding. The disease affected every part of his life, from work to family and everything in-between. He said, “For 18 months I was in hospital and would only see my kids on a Sunday. My daughter would stand on my IV pole and I’d push her up and down the corridor. That was the highlight of my week.”

He was told that a small bowel transplant could work. However only ten people in the country had such an operation and only five of them survived. He travelled to New York for a second opinion, but they confirmed that the only option was a transplant and to do it Michael would have to find half a million dollars. He read about a surgeon that had trained in Miami, Michael and his wife went to visit him. He said, “Within ten minutes I knew I could trust him. There were a number of risks, the body may reject the new transplant, the recovery time was about a year in hospital and odds for survival weren’t great but the chance to have a normal life again for me and my family was too big to turn away.”

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In order to get to the operation stage Michael had to undergo a wealth of assessments to ensure his body was ready. “The operation came round much faster than I expected. Three months after I was told I was going on the waiting list, the phone was ringing telling me to get down to the hospital for surgery.” The operation went very well and Michael had to spend the next nine months recovering in hospital. Shortly before the operation Michael started to write a blog. Initially he wrote it to let friends and family know exactly what was going on, but as time went on more and more people started to read it. His posts documented the rise and fall of living with Crohn’s, preparing for surgery, and then day-to-day living after the operation. To date it has had 60,000 plus visitors from medical students to Crohn’s suffers and even his transplant team. He said, “Four or five people have had successful transplants after reading about the procedure on the blog and suggesting it to their doctors.” Michael was only the 11th person to have the transplant in the country. Now they have completed 31.

His first memory after surgery was waking up and feeling a stoma bag resting on his body. This small bag is used to collect the waste from the body and has to be emptied manually. Michael said, “It would constantly leak and the doctors wanted me to measure how much was coming out.” Michael had to rely on visually monitoring the bag to know when it was full, then he’d empty the contents into a plastic jug for the nurses to measure it and record the data on a chart. He thought that there must be a better way to do this. He used social media to contact other stoma bag users for their views, but the only feedback he got was ‘just get used to it’.

He didn’t want to ‘get used it’ and decided to figure out a way to create something that would solve his problem. He hacked together a device with a blackberry battery, Nintendo wii sensor and a motherboard that would beep when the bag was full. The next stage was to work out how to measure the contents to deliver data for the doctor. Once he’d done this ‘11 Health’ was born. ‘11 Health’ is Michael’s company which he set up to allow him to develop and deliver his measuring device for medical bags. The device is attached to the bag and it sends the patient an alert to their phone or mobile when the bag is full. It also records data which allows doctors to monitor patients remotely. Michael’s company is now attempting to refine the medical bag, making it more patient friendly. He says, “We’re not a cool technology company… my son says ‘we measure shit’ but there is a real need for this technology; our challenge now is how we scale it and refine the product and then get it out to more people in need.”

Michael is keen to get as much coverage for his product as possible. He is currently pushing it in the EU and US and managing a team of 12 across both continents. When he was full of despair and in great discomfort, Michael couldn’t have dreamed that years later he’d be running a company which could aid Crohn’s sufferers, delivering keynote speeches, running workshops in the White House or becoming the first patient in residence at MedicineX, the world’s biggest digital health programme. Five years post transplant, he is in uncharted waters. He has moved past ‘just surviving’ and is fully embracing life, enjoying family time and pushing a product that he truly believes in.

www.11health.com

Learn more about the #HealthcareHeroes at: www.healthcare-heroes.com

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The Porter who lights up a hospital

John Jackson, a hospital porter, ensures that every patient that comes into his hospital feels at home. Sometimes, it can be something as small as simply introducing himself but John knows that these small gestures can make such a big impact on a person’s stay.

His personal approach has not gone unnoticed. It’s resulted in many honours and awards for the compassionate care that he provides. It’s always important to recognise that the individuals that go into hospital are people, not patients and John makes this his mission every day.

Sometimes small gestures mean so much. The friendly smile when you feel down, the non-judgemental friend when you need to talk. John works as a night porter and provides both these gifts with ease.

The sun sets behind the rolling hills surrounding Blackburn as we meet John in the cafe at the Royal Blackburn Hospital before his shift.

He’s been based here for 15 years working the majority of his time as a night porter. The job involves a lot of patient and family contact, something John loves. “Whenever I’m moving someone I’ll always talk to them straight away, introducing myself and letting them know what’s going on because it’s those first ten seconds that are the most important.” We move from the cafe up to the third floor and John acknowledges everyone we pass, making sure anyone who gets on the elevator knows exactly where they are going, greeting each individual with a big smile. I asked if he ever has gloomy days when he doesn’t feel like engaging. “No,” he says instantly. “I love my job. I love people, everyone is an individual and I accept them for who they are. I know that no matter how I feel, people in hospital will be feeling worse. They are in here for a reason and if I can make their stay a little better then I will.”

His personal approach and friendly nature is one that has been recognised by many, from people on the street to organisations that have provided him with various honours and awards. John said, “I was on the bus the other day and a chap said, ‘I remember you. You helped my dad when he was in the ‘Royal’. Thanks for that mate.’ Those things mean a lot you know. I’m not a nurse or a surgeon performing life-saving procedures, but when people remember you that’s really nice.” He has also recently been presented the coveted Kate Granger Award for Compassionate Care. This came about for a number of reasons but one important area is his work with the hospital’s Bereavement Steering Committee (B.S.C.).

Moving people who have passed away is a part of the job that he takes very seriously. “When my mum passed away my sister said, ‘She can’t go to Heaven on her own’, so we put a cuddly toy next to her. Now when I take a child down to the mortuary I always like them to have a cuddly toy and I never forget to say, ‘Goodnight, God bless’. It’s important to treat people with dignity and respect at every stage that they are in our care.” This thoughtful nature has seen John take a large role in the B.S.C. His input has helped shape the service, improve the opportunity for counselling and has led to the introduction of bereavement suites for the families. Over the years he has talked to lots of families that have lost loved ones. He says, “I’ve lost people very dear to me over the years and it’s hit me hard, so I treat everyone the same as I’d like to be treated.”

John worked previously as an engineer at Lucas Aerospace for 20 years before making the move to the NHS. He told us that “Being an engineer was fine but the last 15 years working here has flown by. I love it.” The pride he takes in his job and the smiles he carries with him every day is commendable. The little time we spend with him gives us a tiny glimpse of the work he does and the lives he touches. It goes to show that little gestures like a smile can be so important. In a job that can often go unnoticed in a large hospital, John shines like a bright light.

Learn more about the #HealthcareHeroes at: www.healthcare-heroes.com

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