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)

 

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/)

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)

What is the best antidote for a jellyfish sting? (Clue: it’s not urine) – The Guardian UK, May 9 2017

What should you do if a jellyfish stings you? Scientists have found that applying vinegar is the best solution, and that popular remedies including urine, lemon juice, and shaving foam could make the situation worse.

A recent study in Toxins, which investigated the efficacy of various remedies for stings from the Portuguese man o’ war (Physalia physalis) concludes that rinsing with vinegar before applying heat is the most effective treatment. The commonly recommended treatment of seawater and ice was found to cause more harm than good.

Dr Tom Doyle, a biologist at NUI Galway and co-author of the paper, conducted research on both the Atlantic and Pacific man o’ war. He said the findings represented a complete U-turn.

“For me it was certainly surprising as we have been recommending seawater and ice for the last 10 years,” he said. “But that’s the nature of science; we have to hold up our hands and say we were wrong. We went back to basics and tested different methods. There’s no doubt about our findings. We are absolutely 100% certain that vinegar does the trick.”

The scientists tested various solutions on sheep and human blood cells suspended in agar. The method of scraping away tentacles was found to increase pressure on the affected area, causing the stinging capsules to fire more venom into the victim. However, applying vinegar was shown to prevent further venom release, allowing the tentacles to be safely removed. Immersing the area in 45C water or applying a heatpack resulted in fewer red blood cells being killed.

In contrast, rinsing with seawater was found to worsen stings by spreading venom capsules further, while cold packs caused them to fire more venom. The infamous urine theory – popularised by an episode of Friends – was also found to aggravate stings. Baking soda, shaving cream, soap, lemon juice, alcohol and cola yielded similar results.

Although vinegar is used for many other jellyfish stings, the man o’ war has long been considered an exception, with many guidelines warning against its use. While it’s true that the man o’ war is different – they are technically a siphonophore and not a jellyfish – the scientists behind this research are now arguing that all stings be treated equally.

Biologist and jellyfish expert Dr Lisa Gershwin agrees that treatment with vinegar works, but expressed concern about the hot water recommendation.

“Hot water does take away the pain but this is a neurological process; it has nothing to do with denaturing the venom,” she said. “Fresh water activates discharge and by applying heat, you are dilating the capillaries and allowing venom to go further into the body.”

The study was prompted by an influx of man o’ war on European coasts last summer and built upon the findings of a study on box jellyfish conducted by the University of Hawaii at Mānoa. The researchers will now turn their attention to the lion’s mane jellyfish to determine if the same conclusions apply.

(First published in The Guardian UK. Available online at: https://www.theguardian.com/environment/2017/may/09/vinegar-best-antidote-jellyfish-stings-urine-lemon-juice-make-worse-study)

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)

Parents of children with Cystic Fibrosis bring their campaign to the Dail – Enniscorthy Guardian, December 10 2016

Ballindaggin mother Julie Forster left the Dail feeling hopeful last Thursday following a presentation to push for the funding of Cystic Fibrosis drug Orkambi.

Julie was one of 14 parents from around the country to travel to Dublin in a bid to gain government support for the drug, which they believe will improve the quality of life for their children. Armed with photographs and stories of their beloved children, the representative group made a moving presentation to TDs on the reality of living with the illness.

‘We think it went very well. It is hard to say but many of the TDs said that they were very moved,’ said Julie, whose three-year-old daughter Ruth suffers from Cystic Fibrosis. ‘We had a very good attendance which we were happy with. James Browne was the only Wexford representative that I saw but we had many more from around the country.’

Though Julie did not make a presentation herself, Riverchapel mother Claire Merrigan spoke about her son Mason, the severity of his illness and the daily routine that he must endure. Several other parents from around the country, including those whose children are currently on the Orkambi trial, also spoke about their own experiences.

‘Some of the TDs asked some questions, mainly around the Orkambi figures on improvement. We explained that, while the figures don’t always look great, the reality is that a lot of people are doing well on it and a lot of money could be saved on hospital admissions if people were on Orkambi,’ explained Julie. ‘All of them promised that they would go further with it. There is nothing definite but anyone we spoke with afterwards said that they would support us. They agreed that a solution has to be found.’

The meeting took place only days after an exclusive report was published in the Sunday Business Post stating that the HSE drug committee had recommended against funding Orkambi, which has a €159,000 annual price tag per patient. It was reported that the committee did not view the drug to deliver enough benefits to justify its high cost. Julie and many other parents and sufferers around the country learned of the news through a Tweet – something Julie described as ‘disgraceful‘.

‘We are still very disappointed with how the news came out,’ said Julie last week. ‘The HSE still haven’t made a formal statement on it but they aren’t denying it.’

However, in the days following the leak, Minister for Health Simon Harris has reached out to overseas counterparts asking them to work with him to make Orkambi available for patients at a cost-effective price. He has assured patients that the process for accessing Orkambi is not over but said that more discussions and price negotiations with manufacturer Vertex are needed.

In the meantime, the parents group will continue to fight for their cause. On December 7, they will travel to Dublin to participate in a march to the Dail.

(First published in the Enniscorthy Guardian newspaper: print edition. Also available online at: http://www.independent.ie/regionals/goreyguardian/news/parents-of-children-with-cystic-fibrosis-bring-their-campaign-to-the-dail-35270351.html)

Enniscorthy mother won’t give up fight for her CF daughter – Enniscorthy Guardian, December 3 2016

News that the HSE won’t fund Cystic Fibrosis drug Orkambi is ‘devastating’ according to Julie Forster, but she is not going to let it prevent her from keeping up the fight to get access to the drug for her daughter.

At the weekend, the Sunday Business Post broke the news that the drug will be rejected for use by the HSE after their drug committee recommended against funding the drug at a recent meeting. According to the article, the committee, which includes several senior clinicians, decided it did not deliver enough benefits to patients to justify its €159,000 price tag.

Ballindaggin resident Julie Forster, whose three-year-old Ruth suffers from the illness, learned of the news through a Tweet on Saturday night, only days before she and members of a CF action group for parents will hold a presentation in the Dail to push for the funding of the drug.

‘The way it broke is just disgraceful. Members of the Cystic Fibrosis community and even Cystic Fibrosis Ireland learned of the news through a Tweet. We took that pretty hard and at first, we were wondering if it was misinformation,’ she said. ‘It just shows the way that the CF community is treated in general. Apparently Simon Harris didn’t even know about this. The fact that they went to the newspapers first is a disgrace.’

Julie said that she was ‘absolutely devastated’ to learn of the news, which according to her, has taken away a lot of hope for parents and sufferers of Cystic Fibrosis. The possibility that the drug may not be funded by the HSE would also bring the drug trials, that several people around Ireland are currently undertaking, to a halt. Though Julie’s daughter is not currently trialling Orkambi and is ‘quite well’ at the moment, she said that this could affect several families that she knows.

‘I am in touch with some families whose teenagers are on the trials and are doing really well. They have been on it for three years and can’t contemplate what life would be like if they are taken off the drug,’ she said.

Despite the huge disappointment brought by the recent news, Julie is still prepared to fight in the Dail on Thursday along with representatives from 14 other families who are affected by the illness.

‘This Thursday, we will still do our presentation and hope that we can get as many TDs as we can to back it. Simon Harris has the power to overturn the decision but he has said in the past that he wouldn’t. The drug company Vertex have issued a statement saying that they are still willing to negotiate on the price. So our options are either to negotiate on the price or make Minister Harris change his mind,’ she said. ‘We are hoping that we will come to some agreement.’

Julie has invited the five Wexford ministers to the presentation and has received responses from all of them. James Browne has promised to attend the meeting, while Mick Wallace said either he or a representative will be there. She was informed that Brendan Howlin will do his best to attend. Paul Kehoe is unavailable but has contacted the group to say that he will meet them on another date. Meanwhile, Michael D’arcy said that he could not attend.

Other members of the group nationwide have also called on their TDs to attend, while all are encouraging people to attend a separate march to the Dail on December 7.

‘We have received quite a promising response from TDs. Hopefully when they come out, they will learn more about the illness. It might help them to put faces to numbers,’ said Julie. ‘It is a matter of trying to get this funded and in my opinion, it has to be done. It is a matter of life and death to some people.’

(First published in the Enniscorthy Guardian newspaper: print edition. Also available online at: http://www.independent.ie/regionals/enniscorthyguardian/news/enniscorthy-mother-wont-give-up-fight-for-her-cf-daughter-35251969.html)