Tag Archives: The Passion Project

Matt Durran – The Artist Pioneering Nose Reconstruction Surgery

Matt is an artist working with glass, who had never planned to work in the medical world. But when an opportunity came up that involved growing human noses within glass moulds, he jumped at the chance.

Just under the railway bridge at the end of a row of shops, there is a red door with frosted glass. The only suggestion of an artist’s residence is the pressed ceramic house number screwed to the wall. We ring the bell tentatively half expecting it to be the wrong address, but with a clunk of keys and a swing of the door Matt Durran, an artist working in glass, welcomes us in.

We first heard about Matt’s work through the Craft Council. He didn’t seem an obvious choice for a healthcare publication like this one, but after a bit of research around his work, we were fascinated and got in contact. Matt prides himself on his variety of work. Over the years his explorations have taken him from ancient lava-formed obsidian to stockpiled waste glass and the frontiers of new technologies. He has created unique pieces of installation art, up cycled waste glass as well as solved specific problems for the medical industry. One of Matt’s early jobs was carving ice for an events company back in the 1990s. He said, “It seemed a bit crazy, you’d do all that work for it just to melt away so I wanted to do something more permanent and was really intrigued by glass.” He started on lots of different projects using glass but quickly realised that he needed to understand the material technology side. When he got the opportunity to study in Sunderland and Copenhagen he jumped at it. He was fascinated with the technical and cultural differences in approach between the two countries. This led to a re-evaluation of his practice.

Matt’s insight into the material possibilities of glass, alongside his artistic ability to make creative leaps made him the obvious choice for the team at the Royal Free Hospital. They needed bespoke, highly accurate products but hadn’t managed to find a medical glass maker who could produce exactly what they were looking for, which was to create a non-reactive, detailed mould for tissue-engineered cartilage specifically to create a nose. Matt knew it could be done. He said, “Glass is the perfect material to use for this, it’s been used in the medical industry for 250 years, it can be sterilised easily, it’s inert and you can see cells growing through the material. It can also be manipulated to exact requirements.”

His creative approach allowed him to experiment with a number of different moulds until he happened upon one that would work perfectly. He began with a plaster cast of his own nose and then used a technique called slumping – laying warm glass over a mould with painstaking care – to make several glass moulds of his own nose. The moulds were then filled with a synthetic material, which contained the patients cells to create the scaffolding of the nose. It was then grown in a bioreactor. Once the basic structure of the nose was created it was attached to the inside of the patients forearm. This bio-integration allows blood vessels to populate it and skin to fix to it, a process that can take months. Then after successful bio-integration the nose is surgically removed from the forearm and carefully attached to the face. Matt said, “Although my part’s a small one, it’s an important part.’’ Getting the nose accurate for people is very important so the detail of the mould had to be just right. A lot of the patients lose their nose through cancer and other illnesses.

Losing something so central to the face can bring a loss of identity and self esteem, so this process allows patients to get back the important body part as well as their confidence. Since that first nose Matt has gone on to make a lot of different moulds for noses, ears and even voice boxes. He said, “Each nose job was completely different. I remember one particular nose I needed to re-create had a real bend in it and I suggested straightening it out to which I was met with ‘no thanks, that’s what makes my nose unique’.”

The research around this type of surgery is still on going and Matt’s skills are still requested from time to time, but his next project is away from the medical field in macro glass sculpture. He added, “My father said to me… the best job in the world is the one that’s different every day. If that’s true, then I guess I have the best job in the world.” Matt’s creative input opened doors for researchers that were previously closed. He researched, experimented and created moulds that were simple in production but detailed in execution giving patients the confidence to once again be comfortable in their own skin. An artist working in glass may be the last person you would associate with the medical industry but researchers may now increasingly look to local craftsmen to play a vital part in the process, acknowledging that problems sometimes need that external creative input to reach the desired outcome.


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

The Walking Group – The team transforming lives with a good walk

The world can be a dark and lonely place for mental health patients. Especially for those on secure wards. But by providing patients the opportunity to get out in the open, this team is transforming lives through the simple act of walking and talking.

We entered into the airlock from the outer door, photographs were taken of our faces, security tags printed and then handed to us. With the outer door securely shut we were allowed into the courtyard. We then headed over to the allotments through a gate in the far right corner to chat to the team who were heading up the ‘Walking Therapy Group’.

The facility provides specialist medium and low secure services in a secure hospital setting for patients diagnosed with learning disabilities and autistic spectrum disorders. A lot of inpatients here have a history of offences that are directly related to their specific disorders. The focus is on rehabilitation aiming to get people back into the community. We met a few of the ‘drivers’ involved in this rehabilitation, one of them being Sarah Ommaney, a keen walker, who started as a healthcare assistant in 2014. She was keen to get the inpatients out of the confined environment and into the outside world. She said, “Exercise can help with anxiety, also being outside gives the inpatients a chance to interact with others they may meet and they can apply the social skills they learn in sessions here at the hospital.” She spoke to the ward staff and put together a proposal to get inpatients out for the day. However, it took the best part of a year to get the relevant permission and as soon as that happened there was plenty of interest to venture outside the walls from both inpatients and staff.

One of the interested staff was Sandie Pattison. She had been a healthcare assistant for over 25 years and retired two years ago, but the ties were strong and she returned ‘on the bank’. “As soon as I heard about the walking group I knew I wanted to be involved. There are some amazing places just outside these walls within half an hours drive and I knew the inpatients would really benefit from getting outside into the green space.” On some of the early walks the team noticed the inpatients were stopping to stroke dogs of fellow walkers. Sandie said, “There are lots of studies around animal therapy with direct links to reducing anxiety, so I started to bring my dog Bryan along with us.” Bryan quickly became a hit with most of the inpatients and they would save scraps of food for him when they knew they were going out.

Another professional facilitating the walks is Lucas Hollingsworth, an occupational therapist. He noticed that, “Anxiety levels of the inpatients were reducing and all the feedback we were getting was really positive.” He told us that the walks give inpatients a shared interest to discuss when they are back in the unit. They can help plan walks, come up with suggestions and ideas and all of them look forward to the freedom each walk brings.

Lucas’ role specifically looks at the life skills of the inpatients, concentrating on the overall aim of getting them back into the community. The walks provide him with an opportunity to witness the progression inpatients are making on a regular basis. As well as thinking for themselves, they are planning what they will wear, working out routes, understanding the country code and helping with navigation. Lucas said, “There was a patient who came out for the first time and noticed Sandie and me greeting fellow walkers and he asked if it was something he could do. Now he will say hello to people he sees on the walk. These moments just wouldn’t happen tucked away in the wards.”

The team take inpatients out every week but there are currently more people who want to go on walks than they can facilitate. This has led to a surprising trait of generosity, for instance Sandie told us that, “One of the lads came up to me and said, ‘I went on the walk last week so you can let someone else go this week.’ Not only that but I’ve noticed that when everyone is out walking there is a real sense of camaraderie, some will slow down for others or carry another person’s backpack. Even before we go on the walk some of the inpatients will ask others ‘are you going to be warm enough, have you got enough layers on?’” The walks bring a new found respect and a definite lack of aggression. Sarah said, “The new environment levels the playing field. The tensions that may have been high on the wards almost instantly dissolve as soon as we are outside.”

As well as reductions in anxiety and aggressive behaviour, the outside freedom has seen a number of impressive results in communication. Sandie recalls, “One real break through we had was when a patient who was an elective mute started to talk on one of the walks. Previously he would say the odd word with great reluctance but now he is openly talking, something he’d not done in any session back at the hospital.” Lucas adds, “On the walks there is no pressure to talk, so you find patients open up, talking about personal interests to do with films and sport and we get a real insight to their personalities.”

Rebecca Sanderson said, “The whole focus of what the unit does is to facilitate the inpatients’ journey back into the outside world and these trips really help to see how they can cope in a number of different situations.” There is a huge amount of trust and respect placed on the inpatients and in order to leave the compound they have to demonstrate good behaviour. It’s working because the findings and feedback have been very positive. The walking group is now well established and the team have the support of the doctors, nurses and management and have secured extra funding to allow the walks to continue. They are delivering a whole host of benefits both physically and mentally and the team will continue to offer the walking therapy to compliment all of the other treatments, helping  improve the inpatient’s well-being and ultimately their move back to the outside world.


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

Olive Fulton – The lacrosse international with brittle asthma

Olive could be rushed to hospital at any time, because of her brittle asthma condition. But rather than sit on the sidelines waiting, she is busy being a nurse, a public speaker, a patient engagement lead, development coach for her national lacrosse team and a serial blogger.

The September winds rustle the leaves above our heads and the trees sway to the beat of the city all around us. We sit in a gated park surrounded by five storey buildings and have found a little bit of breathing space in this busy city, which seems a rather appropriate meeting place to speak about asthma as we meet with Olive Fulton.

From the age of two Olive was diagnosed with asthma and relied on inhalers to control her symptoms. Asthma didn’t affect much of her early life. She was sports mad, playing lacrosse at a high level and later going on to complete a degree in sports science. During a gap year ski season while she was working out in Fernie, Canada, Olive got pneumonia. She was in intensive care and had to be flown from the local hospital over the Rockies to Calgary where a specialist team managed to get hold of her condition. She said, “That £60 I spent on insurance was the best £60 I ever spent, I later found out my medical bills topped £250,000.”

When she returned home she was told she had brittle asthma (uncontrolled asthma). This massively affected her life from that moment on. She was determined not to let the condition dictate her life and continued with her sport and her degree. The three year degree ended up taking four years because of a number of asthma attacks that left her in hospital for weeks at a time. She vividly recalls looking down to the end of her bed while her consultant quietly said to her, “You’re going to have to give up sport before it kills you.”

Giving up though wasn’t something in Olive’s mind-set. She refused to fully stop her sports career and activities but accepted that some changes had to be made. The first was a career change. She trained and qualified as a nurse and got a job working on a renal ward. The second big change was in lacrosse. She moved from all action outfield player to a goalkeeper. She recalls, “I was in goal at a development day and a scout approached me to attend a trial for the national lacrosse team. After the trial I made it into the team. I guess I have to thank my asthma for helping me represent my country in a sport I love.” Olive continues to work for her sport as development director, working at the grass roots level, building the popularity of the sport across the whole country. She is also assistant manager for the national team.

Olive’s condition meant that her job on the renal ward was too tough to maintain, so she moved off the ward and became a community nurse. “My work in the community is about supporting patients to live the life they want to by making sure they are well enough to do it.” Around the same time she was invited to AUKCAR (Asthma UK Centre for Applied Research). The centre was interested in finding out how Olive copes as a patient and the issues she faces. This chance meeting has led to her spending more and more time doing patient and public involvement with the centre to aid asthma research working with the Ph.D. students, lecturing on the rises and pitfalls of asthma and speaking nationally at lots of conferences.

We leave the park and stroll up a pedestrian area, dodging the bikes and the hoards of students. Olive talks about her blog as we head up to AUKCAR, saying, “I can’t remember when I started writing but I feel I can write better than I can speak about my feelings.” She went on to say, “I’ve had lots of feedback from people who’ve said the blog has shown them that this type of asthma isn’t the end of the world. That you can still achieve and plan to do lots of things you want to do. If people get something from stuff I write then I’ll keep writing.” Her blog has been read by thousands and helped a wide range of people from fellow sufferers to doctors and clinicians, all trying to better or fully understand how asthma can affect daily life and ways to improve.

After a short walk we arrive at the University where some AUKCAR researchers are based and Olive shows us around. This is where she is currently helping with children’s research groups. She has helped set up a centre in Edinburgh and London and is aiming to help establish groups in other cities. At the group they are prototyping new decals for inhalers for children, sharing experiences and creating a patient support group. “I act as a middle man. There are lots of academics trying to understand asthma and how it affects patients. I have experience from both sides so can help to make sure the right questions are asked.”

One of Olive’s latest posts leads her to talk about her ever increasing use of drugs. She mentioned how she was picking up two carrier bags full of drugs for the week. She has drugs to control her asthma, drugs to control the drugs and drugs to suppress side effects. She said, “Do I wish I didn’t have asthma and didn’t have to take drugs? Yes, but there are things I would never have done if I hadn’t had asthma. Last year I got an article published in the British Medical Journal, I’ve played lacrosse for my country and spoken at lots of lectures, I can’t actually number or name the amount of great experiences and amazing people I’ve met.”

Clearly Olive would prefer a life without the bags full of drugs, but the burden asthma has put on her life has forced her to think differently, to act differently and face life head on. Where other people could have easily disappeared within themselves and hidden from the world, Olive has fully embraced life. One week she could be giving a talk in London, the next coaching lacrosse, working in the community or writing her blog. She is a focused, driven individual who has continued to do what she does despite her brittle asthma and by doing so has helped so many people. She said, “Doing little bits and pieces rather than massive things keeps my life achievable and really interesting. If I didn’t do the things I do then my asthma would have won. Simple as that.”


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

Naomi Campbell – The simple measures that change patient hydration

It all started with a simple idea for a micro-straw. Now Naomi Campbell is a hydration nurse specialist and is the founder and Innovation Director at Simple Measures, a public interest company set up to improve hydration across all areas of health and social care.

It was at home where the idea first came to Naomi Campbell.  “I don’t know why I didn’t think of it sooner,” she remarked. She was watching her daughter play hands free with a toy made of plastic strands. Her daughter was using a single strand (about a metre in length) as a drinking straw to get a flow of water just by sucking very gently, while lying down in bed. Naomi had a go, and instantly knew this simple concept could be developed to create an entirely new type of drinking aid.

Five years previously Naomi, a nurse, had been caring for her sick mother. She had taken a number of months off to look after her around the clock with the help of her family. “Even with one-to-one care 24 hours a day, mum would still get dehydrated.” Preventing dehydration is an epidemic problem in elderly care.  According to recent figures, one in five people coming into hospital are under-hydrated. This has a massive impact on resources as it is often the root cause of acute admissions to hospital due to urine infections, falls and confusion and acute kidney injury which is now known to cost the health service more than breast, skin, and lung cancer combined. Following the experience with her mum, Naomi worried that nurses and carers on busy wards would find it very hard to adequately support and monitor patients’ hydration intake. It was a concern that stayed with her, laying dormant until that moment when she saw her daughter sucking on the toy straw.  From that day Naomi knew she wanted to focus her energy on solving the problem of poor hydration in hospitals, care homes and the community.

Naomi set about developing new ideas to help improve basic hydration care and gained funding from her then employer Peninsula Community Health, to help support her ideas and ultimately create a unique new nursing innovation role. She also spoke to relevant ‘innovation’ groups to help develop her ideas into practice. The first product Naomi brought to test phase was a new hydration risk assessment tool with a simple ‘traffic light’ drinks coaster system. The coloured coasters would act as a visual aid for nurses and carers alike. The simple idea indicates how capable the patient is at hydrating themselves… green being independent,  amber signifying some help needed, and red signalling full support needed from a carer. The initial trials of the coasters were a huge success. Nurses on a busy ward could quickly glance at a patient and check their hydration status. This gave Naomi the confidence to trial her next product… a mug that had a measuring device inside it. “A lot of the time frail elderly patients take just a few sips of their tea or coffee and that would be it.” This mug allows carers to more accurately measure the amount drunk, before then throwing the rest away. These products, although very simple were proving to be a hit with frontline nurses, care staff, patients and their families.

Back in 2010, Naomi secured a Regional Innovation Fund of £15,000 and with support from NHS Innovations Southwest she continued to develop the design of her new drinking aid known as the ‘micro-straw’. On December 25th 2013, her micro-straw was officially granted a UK patent. Since that light bulb moment back in her daughter’s bedroom in 2009 Naomi has become the ‘go to’ person for hydration. After developing the first drinking risk assessment tool based on ‘reliance on a carer’  in 2011, she was asked to join hydration work stream groups with the Care Quality Commission and the Department of Health, and was also asked to contribute to a large fluid management study, as well as being invited to write a number of articles for nursing journals. Naomi was also part of a parliamentary forum based at the House of Lords to raise awareness about hydration. She said, “There is a fine line between passion and obsession and for the past six years I feel I have been constantly operating within that space.” She is now the founder and Innovation Director at Simple Measures, a new community interest company established in October 2016, that allows her to focus her time on improving hydration care across all areas of health and social care.

Simple Measures is now working closely with frontline care providers, researchers, educators, manufacturers and product designers to help develop simple, cost-effective ways to improve basic hydration care. She said, “Simple Measures now has a clear focus on delivering a bespoke training programme focused entirely on basic but fundamental hydration care, and I am absolutely thrilled we are developing our current and new products.” Dehydration is a global problem and the company is already linking with people in the UK, Europe, America and Australia.  Naomi also firmly believes the ‘micro-straw’  – which triggered her passion for improving hydration, has massive potential to support humanitarian, life saving, oral rehydration therapy for children, as it is widely known that acute dehydration caused by diarrhoeal disease is the second leading cause of death in children under five years old.

An idea that started in a small village six years ago has culminated in the formation of a new company dedicated to preventing ‘avoidable’ dehydration. One that can now start to tackle a global problem, through education and simple cost-effective products that will improve and save the lives of countless vulnerable people of all ages. Furthermore it will highlight the vital role of frontline carers across the world who every day make great efforts to assist and encourage people to drink enough to remain adequately hydrated.

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

Sophie De Oliveira Barata – The woman turning prosthetics into an art form

Sophie’s creative approach is changing the face of the prosthetic industry. Her designs allow amputees to celebrate their individuality with style, from crystal encrusted arms, to legs with built-in speakers, each piece is completely unique.

“It’s a bit of a mess I’m afraid,” she says. Sophie De Oliveira Barata leads us down a dimly lit corridor to her studio space. Large meter canvases lean against the walls left over from a public art trail the weekend before. We’ve read lots about Sophie’s work, The Alternative Limb Project and were eager to see the studio where all her creations come to life.

With four white washed walls and a row of windows on one side allowing light to penetrate the room it seems a fairly typical studio space, but its contents are anything but typical. Hanging on one wall is a mixture of tools and limbs and next to the screwdriver is a realistic foot. Underneath a hanging hand saw is an arm reaching up from the desktop. Above us we see the head and shoulders of a balding man with one eye. There are visual delights wherever we look. I spin round to see the soles of two realistic feet opened at the top with laces to tie them up, both resting neatly on a wooden step ladder. Then there are the more artistic pieces that catch our attention… the oriental styled blue and ivory leg with drawers in it or the elegant jewelled arm with realistic fingertips. Sophie notices our open mouths and curious eyes, smiles and says, “I’ve always been interested in tricking the eye and mixing fantasy with reality.”

Sophie’s background is in fine art but she gained her limb-making prowess from an early job creating prosthetics. While this didn’t allow her creativity to flow it did develop her detailed model-making skills. It was in her spare time that she explored her creative side, producing costume jewellery pieces for her and her friends to wear. After a while she was keen to harness the creative freedom of the costume pieces and combine that with the detailed skills learned from her day job. So she set about finding a person to build an alternative limb for. Viktoria Modesta was the ideal amputee, a model and singer who embraced and celebrated her individuality. The two met and Sophie set about creating a number of pieces for her, one of which she wore at the London 2012 Paralympic closing ceremony. A picture of Viktoria hangs framed in the studio wearing the limb. It’s a striking piece, fitted to Viktoria’s leg just below the knee socket. It’s full of rhinestones, shards of mirrored plastic and studded with Swarovski diamonds.

Viktoria’s limb was a talking point and it gained Sophie a lot of attention. Since that time she has created a number of alternative limbs, from a nature inspired flowered leg to a ‘Metal Gear Solid’ bionic arm for a man who lost his right arm in a train accident. Sophie said, “I’m really interested in pushing the boundaries and unlocking imagination, whether it’s mine or the person I’m working with. It’s also great to get the general public excited and hear them discuss ‘If I were an amputee what would I have?’”

Her work can be split into two areas, the realistic limbs and the alternative limbs. Sophie makes about six alternative limbs per year, most are privately funded and she will work directly with a client to explore the possibilities and ensure their personality is represented. She said, “There is a genuine need for realistic limbs so I’ll continue to produce them but I want to keep pushing the boundaries in my work with alternative limbs. The world is constantly changing and more and more amputees now see their limbs as accessories.” It is easy to see a future where people will own a number of limbs depending on the situation, the conservative realistic looking limb for work, right next to the flashy personally designed statement piece to wear on a night out. Sophie’s work is allowing people to express their individuality rather than hide it away.

In the world of prosthetics function has always won over fashion, but Sophie’s work now offers the opportunity to fuse functionality with personality. The alternative limbs Sophie creates are just that, they are as different as the people she makes them for. You can’t pigeon-hole her work, it travels from real to surreal and visits every stop in between. The creativity flows through each unique piece, from crystal encrusted arms to legs with built-in speakers. Her work celebrates individuality in its purest form and allows people to celebrate their differences in ways they never thought possible.


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

Teresa Chin – The isolated nurse who created a community of 60,000

Teresa felt isolated in her nursing career so took to Twitter to find nurses who felt the same. She is now the driving force behind @WeNurses, a modern day online nursing revolution with over 60,000 active followers sharing information, ideas, knowledge and support in order to improve patient care.

In healthcare circles Teresa Chin is a social media guru, a skilled communicator, connector of people and a conversation starter, that is as long as those conversations are 140 characters or less.

Back in the 1990s Teresa worked as a nurse in a variety of different roles before becoming an agency nurse and working predominantly in elderly care. She said, “Being an agency nurse allowed me to balance my work and life commitments very well. The downside is that you don’t belong to any single team and have to seek out your own on going training. I felt quite isolated, and after a rant at my husband Nick, he suggested connecting with other nurses via Twitter.” Teresa had not yet embraced social media and at first dismissed the idea feeling reluctant to communicate with people she had never met. However after continual encouragement from her husband she decided to set up an account.

She started out anonymously as @AgencyNurse in 2010 and began tweeting about articles she’d read or new things at work. This sparked conversations quite quickly which both surprised and encouraged Teresa. She then created the @WeNurses Twitter handle to organise Twitter discussions every other Thursday. Teresa soon realised that there were lots of nurses who really wanted to discuss various topics from employment rights to new policies in healthcare. It was clear to her that social media could be a great way to engage nurses, to start discussions and help the large nursing community. She then decided to create a website for WeNurses to become an online community that could share the Twitter discussions. This started in 2012. “From early on Nick helped me out with the technical side, setting up the social accounts, building websites, integrating Twitter into the sites and making sure all the conversations were captured.”

WeNurses quickly grew, attracting healthcare professionals from all over the world with the current count on Twitter being nearly 60,000 active followers. As a result of this success lots of people started contacting Teresa asking if she could initiate discussions on specific subjects and in 2014 Teresa decided to set up WeCommunities which is a virtual space that could connect, drive and support specific tweeting communities within the medical world. WeCommunities hold discussions on chosen subjects, then all of the information from the chats are logged and stored on the site. This bank of resources is constantly growing and amassing ground breaking information, links to sites, journal articles, infographics and other important information that otherwise would be hard to get hold of. There is also a ‘Twitterversity’ which is a step-by-step guide to using Twitter on a professional level. Teresa said, “One of the most interesting discussions we had was when Plymouth University contacted me and wanted to run a discussion around sustainability in the NHS, but they wanted to include their colleagues in Spain. So initially we had half the people tweeting in English and half tweeting in Spanish. Within about 15 minutes people we knew who were English started using Google Translate to tweet in Spanish and vice versa. It was great fun as well as a great discussion.” Ideas and opinions can now be shared outside the confines of a specific hospital and experts worldwide can feed into these global conversations, improving knowledge and shaping day-to-day practice.

WeNurses are coming up to their fifth birthday and although Teresa has had lots of amazing feedback, it has been a tough journey. What drives her she said, was that feeling of being disconnected from other nurses, which she didn’t want anybody else to feel. She was also determined to succeed after various bosses told her it couldn’t be done. As well as online support, Teresa has also had recognition from ‘very high up’. She came home one day to see a letter on the floor that had ‘On Her Majesty’s Service’ stamped at the top.  She thought it was a parking ticket. It wasn’t. It was an MBE nomination for her services to nursing. “This was such a honour and as soon as the community found out I was receiving an MBE, Twitter went mad.”

Around 50% of the population use social media, and Teresa’s goal is to get at least 50% of nurses using social media as a professional platform. Teresa may have started out trying to stay ahead of the ever evolving policies and training within the NHS, but she has inadvertently ended up amassing an army of professionals who are now fully embracing the power of social media and are redefining the way information is shared within the healthcare industry.


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.”


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