Irish nurse finds her calling helping terminally ill children find a peaceful ending – Irish Examiner, August 3 2017

A 23-year-old UCC medical graduate, Sinéad Keane is part of a foundation helping terminally ill children in Vietnam, writes Amy Lewis

When medical intervention is not a viable option for a gravely ill child, palliative care is key to making their final days more comfortable. Thanks to a small team of dedicated volunteers in Vietnam, hundreds of terminally ill children are living out their final days in a loving and peaceful environment.

Kerry-born nurse Sinéad Keane is one part of this group of volunteers that form the NGO Little Feather Foundation. Established in 2013 by Ella James and Kate Loring from Australia, it has grown into a team of seven who are keen to make a difference. Despite their various backgrounds and nationalities, they all have one aim in mind: To provide and advocate for palliative and hospice care for terminally ill children in Vietnam.

Sinéad, who has been involved in the group since 2016, found herself working with Little Feather Foundation by chance. Having left her demanding nursing job in Cork to travel and teach English, the Tralee native stumbled across a Facebook post seeking a volunteer nurse in Ho Chi Minh City. She landed the role and now volunteers in the foundation’s government-run centre five mornings a week.

“Most of the children I work with have a condition called hydrocephalus which is caused by the build-up of cerebrospinal fluid in the brain. Unfortunately, for a lot of them, their condition has gone too far for treatment so we just provide basic comfort measures and whatever other care they need,” explains the 23-year-old UCC nursing graduate.

A typical day for Sinéad sees her providing care and company to approximately 20 severely ill and disabled children alongside another nurse from the organisation.

“We arrive in the morning after the children have been bathed by their nannies. There are bouncers for all of the kids which allow them to sit up while we massage and comfort them. We use baby oil and moisturiser to prevent their skin from becoming dry and Vaseline to keep their eyes clean. A few of them have really bad pressure sores so we also provide healing measures for them. But, for example, one child has two very bad sores and for the past eight months we have been trying to heal them. Because he is towards the end of his life and is really malnourished, they aren’t going to heal so we just have to try to prevent them from spreading,” she says.

“In cases like this, you want to think you are helping but sometimes it can be stressful.”

Advocating for the children is another important role carried out by the nurses, who must communicate with the full-time staff in the centre to ensure children’s needs are met around the clock. “If a child is in pain, has a temperature, or has digestive issues, we communicate with the nannies and nurses in the centre regarding the provision of adequate relief from the symptoms. Because children with hydrocephalus are more prone to these problems, providing relief from these symptoms is extremely important in our role as palliative care nurses,” explains Sinéad.

In November 2016, Little Feather Foundation introduced a ‘hospice from the home’ service, which sees their nurses pay regular care visits to terminally ill children in their homes. These children, who are usually living in extremely rural and poverty-stricken communities, would otherwise struggle to receive the medical care that they require.

“Our first visit came about when our head nurse was doing a trek in rural Vietnam. She told somebody in passing that she works with a charity for children with hydrocephalus and a woman in her group mentioned a child with the condition in her community,” says Sinéad.

“Since then, we have been helping to take care of her. After we initially assessed her, we brought general things like a bouncer and pain relief. We also brought a high-calorie formula to prevent her from becoming malnourished as a result of her digestive problems.

“Once a month, a nurse goes to visit to check how she is doing and also, to see if there is anything that the family needs. From the family’s point of view, it’s great that they have some support. They know that they are not forgotten about and that they have someone to talk to.”

While Little Feather Foundation is equipped to deal with a wide array of illnesses, it is predominantly working with children with hydrocephalus. The prevalence of this condition in Vietnam, which causes the head to swell and leads to a host of physical and neurological problems, is believed to be a lasting effect of the dispersion of Agent Orange during the Vietnam War.

Between 1961 and 1972, the US military sprayed some 12m gallons of this dioxin-containing chemical across Vietnam to remove dense foliage that provided enemy troops with cover and food. It was later linked to health issues such as tumours, rashes, psychological symptoms, cancer, and birth defects, spanning generations. Vietnam Red Cross estimates that, since the war ended in 1975, around 150,000 Vietnamese children have been born with birth defects due to dioxin found in Agent Orange.

While hydrocephalus cannot be cured, its symptoms can be greatly reduced with medical intervention.

“With proper treatment, their heads do not have to grow that much. Unfortunately, the healthcare system is so behind here that the children don’t always get the necessary treatment on time,” says Sinéad.

Working with the Little Feather Foundation is a far cry from Sinéad’s previous role as a nurse in Ireland, where she felt constantly exhausted due to long hours and lack of staff.

“Since being here, I have learned that I love providing nursing care. At home, you don’t provide care, you are just running around trying to get all of the jobs done. You don’t have time to be with patients. Now I’m spending all of my time with kids, one on one, reading, and talking to them, comforting and taking care of them.”

Her role is not without its challenges. “We want to make more of a difference here but it can be very difficult when there are no palliative care guidelines or auditing in the country. There’s nothing to keep the standards high,” says Sinéad.

“The nurses here also have different views on how problems occur. Some of it is down to superstition. For example, some nurses think if a child has a pressure sore, it’s from milk falling on their head. They don’t think it is from not turning the head enough. It can be difficult to try and communicate these things with the nurses, especially with the language barrier, but thankfully we have a translator.”

In order to provide children with medicine, pain relief, and comfort devices, Little Feather Foundation relies on donations. While this can sometimes add to the pressure of the team’s daily work, overall, they have been astounded by the generosity of people around the globe.

“For the most part, our work is extremely positive and you feel like you are truly helping. There are challenges and it is an uphill battle when it comes to trying to change big things. But if you keep it simple and keep in mind that you are helping the kids, that is the main thing,” says Sinéad. “We know that we are helping when we can see them smiling. Or when they start crying and and you lift them into your arms and they go to sleep, you feel like you are helping in that moment.”

(First published in the Irish Examiner on August 3, 2017. Available online at: http://www.irishexaminer.com/lifestyle/features/irish-nurse-finds-her-calling-helping-terminally-ill-children-find-a-peaceful-ending-456235.html)

 

Four travellers who aren’t letting their disabilities stop them from seeing the world – Zafigo.com, July 26 2017

Even the best laid plans can go awry, and if regular travellers inevitably face that while trotting the globe, imagine how much more difficult it is for those with disabilities. But, as these four bloggers/YouTubers and intrepid travellers share with us, it’s no reason to not explore the world.

Dilara Earle and Justine Eltakchi @ The Pickle Sandwich

Dilaraand Justine of THe Pickle Sandwich in Madrid (Photo Credit: Instagram @ ThePickleSandwich)

Dilara and Justine of The Pickle Sandwich in Madrid (Photo Credit: Instagram @ ThePickleSandwich)

Jet-setting duo Dilara Earle and Justine Eltakchi are shining a light on accessible travel through their hilarious and thought-provoking YouTube channel, The Pickle Sandwich. The duo joined forces after meeting through AirBnB. Justine, an Australian, is legally blind while Dilara, a Scottish, is profoundly deaf. Since then, they have travelled across Australia, New Zealand, Spain, and Scotland together, documenting their adventures as they go.

“We want to raise awareness through sharing our experiences and through comedy. If one person out there realises not to walk away when talking, or not to downplay our disability when we’ve explicitly told them that it’s real and it’s serious, then I’ll be happy!” says Justine when asked about their goal.

Dilara and Justine in Spain

Dilara and Justine in Spain (Photo Credit: The Pickle Sandwich)

Biggest challenges “I have to prepare my equipment really well,” Dilara shares. “I need a million chargers and adapters to make sure I can recharge all my batteries on the road. I also have to try and remember to tell reception to come and get me if there is a fire.”

Recommended destinations Though unable to pinpoint a place that ‘has it all’, Justine and Dilara find that anywhere with big signs, warnings on the walls, step railings and good lighting are easier to get around. Streets that have lots of street art and musicians playing are always going to be easy on the eyes and ears! The secret to it is the locals though. If the people are willing to help you out and reach out to make your day easier, we never forget it,” says Dilara.

Top tip “Your disability can be a healthy part of your identity! The deaf culture and community is amazing, for example. But don’t let it define you. Let your curiosity and love for the world define your experiences of life instead,” says Dilara.

Jeanne Allen @ Incredible Accessible

Jeanne at the Alpine Meadows. (Photo Credit: Facebook @ Incredible Accessible)

Jeanne at the Alpine Meadows. (Photo Credit: Facebook @ Incredible Accessible)

With limited information about accessible travel online, planning a trip can be a feat in itself for someone with a disability. Jeanne, who has lived with Multiple Sclerosis for 30 years, learned this prior to visiting Chicago several years ago, when it took hours of online research and phone calls to concoct the perfect itinerary. “When it was over, I was about to throw away the itinerary that I spent hours putting together and thought, this is crazy, I could share this with others. So, I decided to start a blog,” explains Jeanne.

Biggest challenges On day one of her ongoing 66-day European trip, Jeanne was presented with one of her greatest challenges yet. “Upon landing in Oslo, the plane crew couldn’t find my chair. It was eventually found but the right arm with the controls was dangling off the side and it was broken,” recalls the US native. “Fortunately, it was still drivable but I had to bend forward so it wasn’t very safe.” Jeanne quickly took action by filing a claim and making contact with the wheelchair manufacturer. “They tracked down a manufacturer in Scandanavia and miracle of miracles, things were set into motion. A day later, the repair man drove to Oslo and fixed my wheelchair on the spot.”

Jeanne’s experience didn’t dampen her spirits but rather, gave her a renewed appreciation in the kindness of strangers worldwide. “While waiting to get my chair fixed, our hotel was tremendous. They found zip ties and duct tape and used them to bring the armrest to the right level. They then propped an umbrella under the armrests to keep them upright so I was going around Oslo with an umbrella across my knees. I felt like MacGyver!”

Kayaking lesson with Allie Ibsen at Achieve Tahoe (Photo Credit: incredibleaccessible.com

Kayaking lesson with Allie Ibsen at Achieve Tahoe (Photo Credit: incredibleaccessible.com)

Recommended destinations Having toured the United States (US), Canada and now Europe too, the city of Victoria, Canada currently tops her list of accessible destinations. “Our hotel there had something I had never seen before. My husband went to the room before me. By the time I got there, he was grinning at me like a Cheshire cat. He handed me the key card and said to open it. I did…the door automatically swung open, and stayed open long enough for me to roll in with my scooter.”

Top tip Plan in advance and be specific with your hotels about individual needs. Using all available tools is also a message that Jeanne tries to spread. “We all hate the idea of disability and giving in to it. But once I did, I found life so much easier. For example, I recently got a van ramp which allows me to travel completely independently,” she explains. “If the tools exist, don’t resist them. They really will change your life.”

Cory Lee @ Curb Free With Cory Lee

Cory and his mother on a hot air balloon ride over Israel (Photo Credit: )

Cory and his mother on a hot air balloon ride over Israel (Photo Credit: curbfreewithcorylee)

Despite being diagnosed with Spinal Muscular Atrophy at age two and getting his first wheelchair at four, Cory has never allowed his disability to restrain his wanderlust. “I started travelling at a young age in the US and that sparked my love of travel. I never saw any limits, even though I use a wheelchair on a daily basis,” he says. “When I was 15, I took my first international trip to the Bahamas. It was the first time that I saw a different culture and way of life and I decided that I wanted to go much further. I have since been to six continents, with just Antarctica to go.”

In 2013, Cory set up his blog Curb Free with Cory Lee to share his adventures with friends and family. He documents his experiences in faraway and unusual places, from hiking through the Amazon rainforest to soaring over Israel in a hot air balloon. Before long, he was being featured on the likes of Travel Channel and Lonely Planet. “People have contacted me to say that my blog has inspired them to travel to Africa or Israel. Some are travelling for the first time. For many people with a disability, it can be hard to get out of your comfort zone and go abroad. When I go out to different places and write about them, I’m testing the waters for these people,” explains Cory.

Cory in the Blue Lagoon (Photo Credit: curbfreebycorylee.com)

Cory in the Blue Lagoon (Photo Credit: curbfreewithcorylee.com)

Biggest challenges While Cory’s posts are brimming with positivity and snaps of enviable locations, he remains honest about the challenges that he faces. Air travel can prove particularly problematic and on several occasions, he has arrived at his destination only to discover that his wheelchair was damaged. “I’m always worried about it being damaged but I try to have a backup plan. It is important to know of wheelchair repair shops in any place you go to,” he advises.

Recommended destinations “Australia was great; Sydney in particular was spectacular. I could ride every ferry, see every attraction and all of the restaurants were accessible. Iceland also really surprised me. The Blue Lagoon even had a special chair to get into the water,” he says. “Also, the people in Iceland were really friendly and willing to help.”

Top tip Cory is constantly thinking about his next destination and when it comes to accessible travel, he believes planning is key. “Start planning as far in advance as possible. Reach out to other wheelchair users that have gone to the destination. Look for blog posts and get that first-hand perspective.”

(First published on Zafigo.com on July 26, 2017. Available online at: http://zafigo.com/stories/zafigo-stories/travellers-who-arent-letting-disabilities-stop-them-seeing-the-world/)

I survived a bus crash in Vietnam – Zafigo.com, July 11 2017

Vaccinations? Check. Passport? Check. Visa? Check.

After months of route-planning and preparations, the countdown is over. My boyfriend and I are ready for our long-awaited backpacking trip around Vietnam and Thailand, and everything is finally sorted. But I soon learn that no matter how organised you are, or how many travel guides you skim through, there are some things that you just cannot prepare for.

It’s day four. We have just checked out of our room on Cat Ba island, and laden down with backpacks, make the sweaty trek to the bus stop. Our next stop is Hoi An, where we will finally experience the vibrant lantern festival that I had been gazing at online for months.

Before my trip, people had warned me off mopeds, drinking tap water or swimming at certain beaches. But buses? Nobody mentioned them. As far as I am concerned, the bus is safe territory.

I throw my heavy pack underneath the now-packed coach and settle into my seat, sandwiched between two couples at the back. “This is going to be a cosy ride,” I think to myself, as I wave at my boyfriend who is perched beside the driver. Except it was anything but.

Within several minutes of rolling off the car ferry, the deafening honk of a horn suddenly drowns out my music. I had been in Vietnam for four days and know that car horns are basically background music here. So I choose to ignore it…until it grows louder, more urgent, more frequent. I try to steal a glimpse out the window but the dated curtains conceal my view.

And then I feel it.

The powerful force that hit the left side of our bus and sends it crashing over. Beeping is replaced by screaming and the screech of steel against concrete as we toss and turn, like a blender full of bodies and luggage.

Some say that when you’re in an accident, life flashes before your eyes. But the only thing I have running through my mind at that moment is, “This is where I die…”

When we screech to a halt, I look around to find absolute carnage. Broken glass. Crying children. Blood. I still don’t know what had happened when, leg throbbing, I clamber out through the emergency exit. The heat is the first thing to hit me. Then reality. A huge articulated truck is responsible for knocking us off track and sending us sliding for about 40 metres. Looking back, it’s a wonder that we all survived.

Other passengers find their way off the bus on their own or in the arms of another. Some are much worse off than others. A distraught man screams for help as he crouches over his unconscious, blood-soaked wife who he soon lifts into a hospital-bound taxi.

I find my boyfriend and hug him close, speechless but relieved that we are alright. Soon, we too are rushed off to hospital, where we are surrounded by doctors and nurses, speaking to us in an unfamiliar tongue while examining every inch of our weary and shaken bodies.

Several hours of prodding and broken conversations later, we are discharged with two souvenirs: A swollen purple leg for me, eight stitches for my boyfriend. In our torn and blood-stained clothes, we make our way to the nearest hotel and await word about our luggage.

We spoke long into the following nights, questioning whether we should continue our trip. In the end, we decide to keep going. The following six weeks are a struggle as we lug bruised legs and egos around Asia. Yet, choosing to get back on the road is the best decision we ever made.

Before our accident, I felt invincible and to be honest, took many things for granted. The accident, albeit terrifying, brought me quite literally crashing back down to earth. For a while, I became cautious, too afraid to try anything that felt even remotely dangerous. Those feelings soon cleared, making way for a sense of understanding, an understanding that some things in life are outside of our control. But we shouldn’t let this stop us from living. If we can’t always be in the driving seat, we might as well sit back and enjoy the view.

(First published on Zafigo.com on July 11 2017. Available online at: http://zafigo.com/stories/zafigo-stories/survived-bus-crash-in-vietnam/)

Eight reasons to visit Da Nang, Vietnam – Zafigo.com, July 5 2017

Da Nang, Vietnam’s third largest city, is often skimmed over by travellers who pass through this port city only to visit the nearby tourist hubs of Hoi An and Hue. But if you choose to explore beyond the airport terminal, you will discover a true gem.

1. Be welcomed by friendly faces

Expect a warm welcome when you arrive in Da Nang as this city has yet to experience the tourist weariness that is obvious in some of the more well-known South East Asian destinations. Visitors are greeted with open arms and most of the locals are willing to lend a hand to new arrivals, whether they need directions, a motorbike or food recommendations. Da Nang is a relatively safe place, and the crime rate is pretty low, but of course it is always important to take safety precautions. Petty theft is the most common offense here so be sure to keep a close eye on your belongings.

2. Gateway to central Vietnam

While Da Nang is a vibrant city full of things to explore, it also serves as the perfect base for exploring the rest of central Vietnam. The ornate and colourful ancient town of Hoi An is only a 30-minute drive away, while other top spots such as the historic imperial capital of Hue, the picturesque Marble Mountains and the ancient Hindu temples at My Sơn are all within easy reach. One place you don’t want to miss is Hai Van Pass, a 21 kilometre scenic roadway through the mountains that became famous following an appearance on Top Gear, and is best explored on motorbike. Those not brave enough to hit the road themselves can take a back seat and enjoy the scenery as part of an organised motorbike tour.

3. Dig into delectable dishes

Vietnam isn’t the first place that comes to mind when you think of tasty cuisine, and newbies may be turned off by stories about pork hocks, duck embryo and snake wine. Yet, on learning some local lingo and embracing an adventurous appetite, you will soon fall in love with the delicate and fresh flavours.

Da Nang is no exception to this rule; in fact, the city showcases some of the best food that the country has to offer, like a medley of local, southern and northern dishes. For an authentic meal, chow down on mì quảng (thick turmeric rice noodles in a tasty broth), usually topped with a choice of meat, fresh herbs and salty peanuts. Other central Vietnamese specialties include bún chả cá (fish ball noodle soup) and bún mắm (fermented vermicelli soup).

If fish is your dish, then Da Nang should be your first port of call as the seafront is brimming with affordable seafood restaurants. Non-meat eaters need not feel hard done by either, as the city is simply packed with quan chay (vegetarian) restaurants – you just have to find them first!

4. One step away from nature

Not many large cities in South East Asia boast a national park on their doorstep but this is where Da Nang stands out from the crowd. Just a short drive from the city sits Son Tra Mountain, a lush green forested nature reserve towering 693 metres above sea level. While hiking to the top isn’t impossible, most choose to wind their way up by motorbike – though it must be noted that a powerful vehicle is required.

You will be spoiled with stunning coastline views along the way, as well as some interesting stop-off points including Man Thai Fishing Village, the 67m-tall Lady Buddha, the 1,000-year-old Banyan tree and Ban Co Peak. If you are lucky, you might catch a glimpse of some of Son Tra’s natural residents, such as the rhesus macaque, red-bellied squirrel or the extremely rare red-shanked douc langur. As the tourism industry continues to rapidly expand here, the future of Son Tra Peninsula is under threat so visit while you can.

5. Run powdery sands through bare toes

If you’re a beach bunny, it’s good to know that Da Nang is home to arguably one of the cleanest and most beautiful coastlines in Vietnam. Stretching for 30 kilometres along the edge of the South China Sea, it hosts several top-class beaches, from secluded bays to tourist hotspots. Perhaps the most famous is My Khe beach, also known as China Beach, which was named by Forbes Magazine as one of the best beaches in the world. Located on the edge of the city, this stunning white sandy stretch sees large crowds in the early mornings and evenings but is relatively deserted throughout the day. However, owing to its immense size, you are always sure to find a spot to yourself, no matter when you go.

After experiencing the madness of the city, this beach is the perfect place to relax and rejuvenate under the shade of an umbrella while gazing out onto crystal clear waters. If you aren’t ready to chill out, test your hand at some surfing, jet-skiing or paragliding. For those who want something more secluded, check out some of the beaches along the Son Tra Peninsula.

6. Non-stop entertainment

If lazing on the beach isn’t for you, it’s easy to keep entertained while in Da Nang. The city is home to plenty of young locals and expats who are always looking for a good time and organised events such as beach yoga, language exchanges, lunch meet-ups and board game nights are all weekly occurrences.

Da Nang also boasts a wide variety of fun and interesting attractions including a small ice-rink, several museums, a concert venue and Asia Park – one of the largest theme parks in South East Asia. Thrill-seekers can get a kick out of the roller-coasters and other fast-paced rides here before taking it down a notch on the 115 metre-high Sunwheel. Meanwhile, party animals eager for a night on the town should look no further than Bach Dang Street, that is lined with dozens of lively bars, restaurants and late-night venues.

7. Bright, blinking city lights

New York, Sydney and London are all famous for their skylines, and while Da Nang is a world away from all that glitz, it does present quite a sight with towering buildings and sparkling bridges. Want to see the city at its best? Aim high and head to the glamourous Skybar at D and G Hotel, where you can watch the city twinkle while wining and dining the night away.

For the cash-strapped, stroll or bike it to one of Da Nang’s many bridges and simply take in the city lights from the Han River. The most famous is Dragon Bridge, one of the longest bridges in Vietnam and one that certainly lives up to its name. The long, majestic bridge takes the form of a gilded dragon, complete with large fangs and hypnotising eyes. On weekend nights, many flock to the bridge to see the illuminated dragon breathe fire and water.

8. Hunt for bargains at the markets

It’s time to brush up on those bargaining skills! The markets of Da Nang are treasure troves brimming with everything from fresh herbs and spices to casual clothing and just about anything else you can think of. Perhaps the most well-known is Con Market, located in the city centre. It may look small but delve a little deeper and you will find a sprawling bazaar with thousands of vendors showcasing a diverse selection of items. Homeware, clothing, shoes, fresh produce, souvenirs and jewellery can all be found at dirt cheap prices here, and if shopping leaves you peckish, there are food stalls and plenty of fruit vendors nearby.

Also worthy of a mention are Han Market and Bac My An Market, which are particularly great for their affordable fruits and vegetables. If you prefer a more conventional shopping experience, Vincom shopping mall and Indochina Towers are full of familiar brands, while boutiques dot the city.

(First published on Zafigo.com on July 5 2017. Available online at: http://zafigo.com/stories/zafigo-stories/8-reasons-visit-da-nang-vietnam/)

 

Families unite to combat eating disorders – Irish Independent, June 5 2017

Since its inception, the New Maudsley Model has helped thousand of families. Amy Lewis talks to one of the founders, Gillian Todd, at her recent workshop in Dublin and she meets parents attending to find out how it has helped them cope with their loved ones’ eating disorders.

When families are dealing with a child who is suffering from an eating disorder, the symptoms begin to play a central role in family life and often the parents and siblings find themselves lost at sea, not knowing how to help – this is where the New Maudsley Model steps in.

The New Maudsley Model is a skills-based programme that aims to helps carers better understand and support their loved ones. It was established by Professor Janet Treasure and Todd (pictured) ­- former Consultant for Eating Disorders and Clinical Nurse Leader with the South London and Maudsley NHS Foundation Trust respectively – who developed it through extensive research coupled with professional experience. The workshop encourages carers to engage in their loved one’s recovery and helps to switch their focus from blame to more effective communication.

“A carer can often be critical and over-protective of their loved one. They may also feel that the illness is their own fault, which of course it isn’t,” said Todd, who has worked with eating disorder patients since 1984.

“Janet developed characters that describe how not to behave. The Ostrich – buries their head in the sand and feels completely hopeless. The Jellyfish – is emotional and upset. The Rhino – is a person who shouts, argues and fights. A Kangaroo carer – puts their baby in their pouch and won’t let them do anything.

“We encourage carers to be a more compromised version. Be a St Bernard: more calm, quiet, unflappable and dependable. We also use the image of a dolphin who nudges, guides and coaches their loved one along.”

Carers are also taught about the psychology behind eating disorders, as well as how to cope with scenarios that may arise at home. This is done through role-playing exercises and practicing OARS: Open questions, Affirmations, Reflective listening and Summarising. In addition, the workshops offer attendees the tools to deal with clinical settings.

A unique part of New Maudsley Model is that it’s aimed at carers of adults and children.

“In the past, carers of adults with eating disorders felt abandoned and excluded. This is one thing that’s out there that they can go to,” explained Todd.

Since they were established, the New Maudsley Model workshops have been facilitated worldwide by its founders or other trained professionals. Over 70 carers attended Todd’s recent two-day course in the Clayton Hotel in Leopardstown, Dublin, in the hope of going home better-equipped to help their loved ones. Parents, aunts, siblings, friends and partners travelled long distances for the course, with some seeking help for children as young as nine-years-old. Several psychologists from the HSE Child and Adolescent Mental Health Services (CAMHS) also attended, as did representatives of Bodywhys, who supported the workshop.

Peter travelled from Ballina with his wife to the workshop, having previously attended a one-day course. His daughter (29) has been suffering with an eating disorder since she was in transition year.

“We first became aware of her illness seven years ago when she was in university,” he explained. “She always ate in front of us so we never suspected it. She used to see a doctor in university who, after a number of years, persuaded her to tell us.”

On first learning of their daughter’s illness, Peter’s family felt extremely alone. They sought all help available but it wasn’t until attending their first New Maudsley Model workshop that they were offered some relief.

“For the first time, we felt that there were people out there like us,” said Peter. “When you have a child with an eating disorder, the focus is on them,” he continued. “I remember asking a social worker, ‘is there anything for us carers?’ You just want somebody to tell you it’s ok, not to lose hope and to try to have compassion.”

Along with offering them support, Peter said that the practical element of the workshop gave them the tools to communicate more effectively with their daughter.

Though she is still battling the illness, the workshop has encouraged them to remain hopeful for her future. He also credits it with giving them the ‘courage’ to recently take their first holiday in years.

While Todd led the latest workshop, several others have been held nationwide in recent months. These were facilitated by professionals who have been trained in the New Maudsley method by its founders.

Galway native Paul and his wife attended a workshop last November, soon after their 11-year-old son was diagnosed with an eating disorder.

“When your child refuses the food you give them, it can become very frustrating. We needed to understand his feelings in order to help him,” explained Paul.

According to Paul, the workshop taught them how to support their child, while meeting other parents gave them some positivity for the future. He recommends it to all carers.

“I read about various methods but that’s the one that worked for us,” explained Paul, who said his son’s health is now much improved. “When your child is young or in their teens, they are with you almost 24/7. If you know how to guide them through recovery at home, it has to be better than just one hour a week with a counsellor.

“The big thing we took away from it is that you really have to throw yourself into their recovery 10,000pc,” he added.

When Connie’s daughter was first diagnosed with an eating disorder, she didn’t know where to turn for help. Attending her first New Maudsley Model workshop gave her the support she was seeking and in an effort to spread this to other carers, she soon invited the facilitators to hold one in her hometown in the west of Ireland.

“You do get information elsewhere but when you attend these courses and gain support through them, that is the most important thing.”

A Whatsapp group that allows carers to keep in touch following the workshops is something she also credits as a great comfort.

“There is huge power in people supporting each other,” she said.

Connie’s daughter (21) has been receiving treatment in London for six months and though she is still in recovery, the family are confident that she is getting the best help available. Connie also feels that the workshops have helped them to better support their loved one.

“We know more about what is going on for her and she is feeling more understood,” she said.

The New Maudsley Model workshops were not available in Ireland when Catherine’s daughter was caught in the grip of anorexia four years ago. However, on learning about it through a colleague, the Dublin-based GP went to London to attend them.

“Parents can get bogged down with the cause of an eating disorder but I learned that this is less important than the factors that maintain it,” she explained. “If there is stress at home, that feeds in to the eating disorder.”

According to Catherine, the workshops were ‘vital’ in helping her daughter through recovery.

“They encouraged us to create an environment of compassion and support, rather than blame. My daughter realised the illness wasn’t her fault and that it didn’t destroy the family. She learned that everyone was behind her to get better.”

Catherine’s daughter, now aged 16, is fully recovered. However, as a GP, Catherine regularly meets parents who are in the same position that she once was. She urged them all to attend the recent workshop.

“Parents were once blamed for the illness but that myth has been debunked. Parents are now part of the solution,” added Catherine.

Many of the New Maudsley Model workshops, including the most recent one, were arranged by Paula Crotty – a Dublin mother whose 23-year-old daughter has battled an eating disorder for over three years. Since attending her first workshop, Paula has been working to get New Maudsley firmly established in Ireland and as a result, Bodywhys recently announced that they will adopt and run the courses in the future. In the meantime, Paula continues to support fellow carers in various ways, such as organising meetings after the workshops and sharing advice.
Paula also established the Whatsapp group which over 70 carers view as a lifeline. The option to join is offered at the end of each workshop.

“If someone is having a low day, group members can give them encouragement to keep their head above the water. It’s also useful if somebody has a question or needs a therapist recommendation,” she said.

Following Todd’s recent workshop, Bodywhys made the decision to adopt the New Maudsley workshops alongside their existing services. However, according to their Training and Development Manager, Harriet Parsons, facilitators will need to be trained in the method before they can commence.

Bodywhys currently offers several supports to carers including a helpline, email support and a free downloadable book. They also run their free PiLaR programme for families of adults and children, which educates on eating disorders and provides advice on supporting someone through recovery.

 

■ Gillian will return to Dublin to facilitate another New Maudsley workshop on September 9 and 10. For more information on the method or to reserve a place, contact newmaudsleyworkshop@gmail.com.

■ Bodywhys run their PiLaR (Peer-Led Resiliance) programme in various locations around the country. The free evening course, which is run by Bodywhys in conjunction with local mental health services, takes place over four consecutive Mondays. Places are free but limited. To book a place or for more information contact Harriet at helpline@bodywhys.ie. Bodywhys helpline: 1890 200 444

Email support: alex@body whys.ie

(First published in the Irish Independent on June 5 2017. Also available online at: http://www.independent.ie/life/health-wellbeing/healthy-eating/families-unite-to-combat-eating-disorders-35781838.html)

Is tracking technology putting creatures in danger? – Irish Times, April 13 2017

Electronic tracking or telemetry is a tool used to gain insight into species behaviour. Data gathered through this method helps to expand our knowledge on certain creatures and serves as a stepping stone to developing conservation strategies and informing policy. However, recent research indicates that it may be a double-edged sword.

A paper on research led by Prof Steven Cooke in Conservation Biology illustrates how poachers are using tracking technology to locate and kill the very species it was intended to protect. One method discussed is“cyber poaching”: the act of hacking into GPS collars to track down animals. The paper points to one notable – yet thankfully thwarted – attempt in India involving a Bengal tiger.

Hacking GPS systems takes “serious computing abilities”, but Cooke said it is relatively easy to tamper with basic devices.

“With a simple radio tag, you can buy a receiver for $300 (€280) online, turn the dial until you hear the animal, and go and find it,” the biology professor at Ottawa’s Carleton University told The Irish Times.

Cooke and fellow researchers also looked at how other groups can abuse tracking devices. An example occurred in Banff National Park, where photographers used personal telemetry equipment to locate wildlife in their quest for a perfect snapshot. As a result, Parks Canada implemented a public ban on VHF radio receivers.

Data gathered through telemetry is often made publicly available by researchers, particularly online. The paper describes how open-access data can prove problematic, with the researchers stressing the need to “share data in forms that do not facilitate abuse”.

“Telemetry provides data that people find interesting and easy to understand but there are ways to tell a story without telling exact animal positions,” said Cooke.

Data misuse

Since the paper was released, many people have come forward with examples of tracking and data misuse. A conference on the issue will be held in Australia in June. “We wanted to get the community talking like this so we can act before it is too late,” said Cooke.

Chairman of the Golden Eagle Trust Ronan Hannigan said tracking is an extremely useful tool, especially for monitoring re-released birds. Though he does not view hacking as a threat here, the trust guards sensitive data, particularly with highly-persecuted animals such as peregrines.

To avoid interference, the Golden Eagle Trust strives to keep nest locations private. If information is leaked, however, they find it safer to make it completely public. “Most people become natural custodians for animals if they know they are there and so it becomes too risky for poachers to target them,” said Hannigan.

When deciding to reveal an animal’s location, Dr Colin Lawton from the NUIG zoology department, says he believes it should be treated on a case-by-case basis.

“It depends whether an animal is particularly sensitive to interference,” says Dr Lawton, who has used radio tracking to monitor squirrels without major issue. “We want to be open without causing a problem to the species. Overall though, I’ve a lot of faith in the public.”

While acknowledging that sharing animal locations on social media can prove problematic – an issue touched upon in Cooke’s paper – Lawton finds the tool beneficial for disseminating and collecting information.

Lecturer in wildlife conservation and zoonotic epidemiology in University College Dublin Dr Barry McMahon says that preventing the abuse of telemetry and data requires the management of people.

“It’s not about the management of data but the management of how humans respond to having specific information,” he said.“Before researching a species, you must carry out studies to see where stakeholders are, how they feel about the creature and how they are being treated.”

Sustainable option

Whether studying Irish wildlife or a threatened species abroad, he feels this strategy is effective. “If a species is being poached, you must ask, Why are people poaching? They are probably in a terrible situation,” he said.“You would hope that, through working with these groups, they might find an alternative, more sustainable option.”

McMahon is a firm believer in open-access data. Though recognising its drawbacks, he feels legislation will eventually adapt to prevent abuses of this model.

Director of the National Biodiversity Data Centre Dr Liam Lysaght is “not aware” of examples of the abuse of telemetry in Ireland but he too stresses the need for risk assessment studies prior to research or disseminating information. While there is a “small suite of species” for which he feels the need to “blur data”, overall, he says that withholding data does more harm than good.

“Over the last 30 years, nature conservation has suffered tremendously in Ireland,” he said.“Data on rarer species has been restricted as people feel making it available might threaten them. This policy hasn’t helped conservation.”

In recent years, he has witnessed researchers becoming more open. This has raised the profile of certain species and is also key in issues such as informing planning decisions.

“Open access is the only way forward,” he said.“The transition from a protective attitude to an open one has been fundamental to what we do.”

PANEL: TAKING TO THE SKIES

Irish researchers may not view poaching as a concern for most native species, but it is a threat to others worldwide, particularly those perceived as valuable such as rhinoceros and elephant. In an effort to conquer poaching in South Africa’s national parks, global defence and aerospace company Paramount Group decided to aim high – literally.

The Johannesburg-based group recently began training dogs in their Anti-Poaching and Canine Training Academy to parachute from planes and helicopters in tandem with a handler. So far, one dog has been trained, with many more set to follow.

“With the African bush being such a vast wilderness and sometimes inaccessible via vehicle, it became clear that alternative methods of insertion must be considered,” said a spokesperson.“Parachuting enables getting the dogs on the ground as fast as possible.”

Though the parachute initiative is in its infancy, the canine anti-poaching unit has already seen success. One dog, Killer, and his handler have been responsible for the arrest of 115 groups of poachers in Kruger.

“These dogs have proven to be the most effective tool . . . [for] stopping or finding poachers,” said the spokesperson.“Before the use of dogs in anti-poaching operations, the success rate was extremely low due to the vast and dense bush. Today, almost every anti-poaching unit has dogs assisting them.”

(First published in the Irish Times print edition on April 13, 2017. Also available online at: http://www.irishtimes.com/news/science/is-tracking-technology-putting-creatures-in-danger-1.3035028)

Lending a helping hand – the path to recovery from an eating disorder, Irish Independent, March 1 2017

An estimated 200,000 in Ireland suffer from an eating disorder. Amy Lewis looks at how the path to recovery can affect friends and family members.

As Eating Disorder Awareness Week rolls around for another year, we are once again reminded of the statistics: an estimated 200,000 people in Ireland are currently suffering from an eating disorder.

Jacqueline Campion and her mother Marie
Jacqueline Campion and her mother Marie. Photo: Jacqueline Campion.

Yet, the figures do not take into account the many parents and other carers who are fighting a daily battle to help their loved ones through recovery. These people do not seek or need awareness, rather they need knowledge, support and better services for their loved ones.

Dublin woman Paula Crotty is one such person. Her journey began three years ago when she first noticed signs that her 20-year-old daughter was developing an eating disorder.

“A few months before we realised she had a problem, she had said that her mood was low and she had gone to her GP. When we realised she was having trouble with an eating disorder, we talked to her but the decision to get help had to be hers as she was over 18,” she explains.

Paula’s daughter (now 23) sought treatment and was later admitted as an inpatient in a public hospital in Dublin. After almost a year, she was discharged and the family were told by hospital staff that they had done all that they could to help her. However, concerned that her daughter was still critically unwell, Paula and her family fought to get the treatment that she required in the Vincent’s Square Eating Disorder Centre in London where she remained for 10 months.

“We went to visit her at least every other week. We had family therapy and meetings with the medical team. It put a lot of extra strain on the family but we felt like something had been done. She didn’t come back better but she certainly came back stronger,” she says.

For Paula, getting this specialist help was the difference between life and death for her daughter, who is still taking each day as it comes but is now home and back in university.

“The services in Ireland are extremely limited,” she says. “People are dying every year as a result of eating disorders. If I were relying on the healthcare system here, my daughter would have been one of them a year and a half ago.”

Paula added that it is extremely important for parents in similar situations to look after themselves and communicate honestly with their other children.

Recent figures from the national eating disorder association Bodywhys show that 47pc of calls come from concerned parents and friends, while 16pc of emails come from the same group. However, carers come in many forms.

“Eating disorders don’t discriminate. They affect everyone from every background, sex, race or age,” says Trish Shiel, clinical manager of the Eating Disorder Centre Cork (EDCC). “We’ve had mothers with grown children; we have people coming with their partners.” Trish recommends the same approach for all carers: have compassion and try to understand the illness.

“The most important thing is to get as much education as you can on it,” she says. “You also need to separate your loved one from the illness so that you aren’t seeing the behaviour as the person. This is a full-blown mental health condition. The person may be functioning but they are still going through an incredibly difficult time.

“Carers also really need to mind themselves… A carer can become obsessed with the illness and burn out.”

When a carer becomes invested in a person’s recovery, it can often cause conflict within a family. Debbie Howard (34) from Bangor, Co Down, has witnessed this, both on a personal level and in her role as a psychotherapist specialising in eating disorders.

“I had an eating disorder when I was younger and the services here were pretty awful at the time. I was treated in London as an outpatient. I would fly over every Wednesday for therapy,” she explains.

“Throughout all of that time, my mum and dad had nowhere to go. They had no idea what to do with me… They would shout or beg or plead or try to do anything because they were so scared.”

The feeling of fear among carers is understandable. Eating disorders have the highest mortality rate of any mental illness. However, despite reality, Debbie says it’s important not to be forceful. “The more you force things, the more you are pushing them away,” she says. “I would bring it up by saying ‘you don’t seem like yourself’. Then they might think, ‘maybe I could talk to them about this as they are not shouting and judging and telling me what to do’.”

In light of her own journey, Debbie also advises carers to help their loved one to find a therapist that they are comfortable with, saying that this is what saved her.

Years after her own recovery and after she became a psychotherapist, Debbie and her family discovered a programme in London for carers known as the New Maudsley Model. This skills-based programme is used worldwide to help carers understand eating disorders and support their loved ones. They received training from the facilitators and began to offer the course through their Caring About Recovery from Eating Disorders (CARED) organisation. Though based in Northern Ireland, CARED can facilitate courses throughout the country.

“The courses help carers to think about and treat the illness in a different way,” says Debbie, who is chairperson of CARED. “If their loved one had cancer would you shout and scream if a tumour isn’t shrinking quick enough?”

Just as cancer takes many forms, so too do eating disorders. Despite having suffered from an eating disorder herself and working with clients with eating disorders as a therapist, nothing could prepare Marie Campion (62) for her daughter Jacqueline’s illness.

“It is very different to be a therapist and a parent,” says Marie, founder of the Marino Therapy Centre. “As a parent, you go straight to denial first.”

Marie also wondered if she had influenced Jacqueline’s eating disorder. However, instead of blaming herself, she applied the techniques that helped her own recovery, encouraging her daughter to talk about her feelings and reassuring her that recovery is possible.

“This language of freedom is about teaching the person that they don’t have to always live with the illness. It’s about believing in recovery,” she says. She adds that it is important to understand that disordered eating is a symptom of an internal distress, rather than the primary issue.

Now fully recovered and working as an eating disorder therapist alongside her mother, Jacqueline (27) credits this language of freedom as a huge influence in her recovery.

“The reassurance from my parents that this illness was temporary really helped me,” she says. When Marie was unwell over two decades ago, she was told that she would have to cope with her illness for life.

“Nowadays people are still told that. We constantly talk about awareness. Everyone knows what eating disorders are. What we really need is awareness about recovery,” she says. Through their work at the Marino Therapy Centre, Marie and Jacqueline aim to spread this message.

Meanwhile, others are also helping improve the situation. Bodywhys continues to offer support and group therapy, both to carers and those experiencing an eating disorder. In collaboration with University College Cork, EDCC recently completed a study on GPs’ knowledge of eating disorders and the findings will be published later this year.

Inspired by her own family’s experience, Paula has organised for eating disorder expert Gill Todd to come to Ireland in April to hold an updated version of the New Maudsley workshop.

Supported by Bodywhys, if successful, it is hoped that they will adopt and run the course regularly.

“I encourage anyone in the same situation to come along, meet other parents and carers and know that they’re not alone,” says Paula.

(First published in the Irish Independent newspaper: print edition. Also available online at: http://www.independent.ie/life/family/family-features/lending-a-helping-hand-the-path-to-recovery-from-an-eating-disorder-35490752.html)