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)

Mayor of Wexford Cllr Frank Staples speaks out about mental health in light of suicide figures – Wexford People, November 19 2016

Mayor of Wexford Cllr Frank Staples says that speaking out about his mental illness was like ‘taking away a mask’ and is encouraging people to open up.

Cllr Staples, who has been open about his own battle with depression in recent years, said that suffering in silence is like wearing a mask – an ordeal that it can become very exhausting for a person over time.

‘It’s so exhausting to be covering up mental illness day in and day out,’ he said. ‘When you talk about it, it can only be described as taking away a mask. You feel instantly better. I encourage people to let down the mask and talk about it.’

‘For me as mayor to speak out about my own battle with depression, it has made a huge difference to me,’ he continued. ‘It feels really good to be open. I know now that if I’m not feeling well, I can talk about it. I don’t feel like I am making excuses.’

Cllr Staples acknowledged that it can be difficult for people to seek help themselves when they are suffering from a mental illness. With this in mind, he said it is important for everyone in the community to play their part in tackling the issue.

‘I have said before that I feel that anyone with a mental illness is strong. They have to face daily battles but they can’t keep fighting forever,’ he said.

‘We expect people to ask for help when they are struggling but not everyone is able to do that. We all have a huge part to play. It’s important to ask those close to you how they are and even though they might not speak out the first time, it might encourage them to eventually open up,’ he said.

At a higher level, Cllr Staples said that establishing a 24/7 mental health unit in Wexford is vital, not only for those suffering from mental illness, but for those close to them.

‘If somebody is suffering from depression for example, it’s good for their family to know that there is 24/7 support available. It gives them reassurance that there is somewhere that they can go if their loved one is in difficulty,’ he said. ‘Mental illness doesn’t only affect those suffering.’

Cllr Staples reiterated earlier reports that the County Council are currently in talks with the government on the possibility of an alternative use for St Senan’s Hospital. He said He would like to see a 24/ 7 unit on the grounds of Wexford General Hospital.

‘A 24/7 unit is definitely needed in Wexford and I don’t think anyone is going to argue that. There has been a lot of speculation about where it should be but I would like to see it on the grounds of Wexford General Hospital as you have access to other services there,’ he said.

‘I would love to see it soon but I am under no illusions; it takes a lot of time and money. Finding a building is no problem but hiring staff costs a lot of money,’ he continued. ‘But if we don’t at least talk about it, it will never happen.’

Improving education on mental health is also necessary, according to Cllr Staples, who said that many young people may not know if they are suffering with depression.

‘More could be done for teens and young people. They might be suffering from depression but don’t know the symptoms. There are so many symptoms of depression. They could be going around feeling terrible and not knowing why,’ he said.

Cllr Staples made his comments following the release of figures from the CSO, which showed that 405 people lost their lives to suicide in Wexford between 1995 and 2015. Commenting on the figures, he said that they were shocking and very high but said it is likely that they are even higher in reality. He said it is difficult to know for sure why Wexford has one of the highest rates of suicide in the country.

‘We have a high rate of unemployment and I am sure that isn’t helping,’ he said. ‘But that’s just speculation. I imagine it is linked in some way or another as unemployment puts more financial pressure on people.’

(First published in the Wexford People newspaper: print edition. Also available online at: http://www.independent.ie/regionals/newrossstandard/news/mayor-of-wexford-cllr-frank-staples-speaks-out-about-mental-health-in-light-of-suicide-figures-35215238.html)

Parents bring Cystic Fibrosis fight to Dáil – Enniscorthy Guardian, November 19 2016

An Enniscorthy mother will join with parents from across Ireland in the AV room in the Dáil on December 1 to push for the funding of Orkambi – a costly life-improving drug for people with Cystic Fibrosis.

Julie Forster from Ballindaggin will join with representatives from 14 other families to highlight their need for the drug Orkambi following an invitation by Sinn Féin to Leinster House. She will attend the presentation on behalf of her three-year-old daughter Ruth, who suffers from Cystic Fibrosis and could benefit from the drug.

‘Often when people with CF get older, they get a lot of lung infections and complications and have to go to hospital every six weeks. I know of some people who have been on the trials for Orkambi and their hospital visits have been brought down from every six weeks to once or twice a year,’ said Julie. ‘It is certainly not a cure but it improves their quality of life. It will allow kids to miss less school and in future, they may even to be able to hold down jobs which otherwise, wouldn’t have been a possibility.’

At present, Ruth’s condition isn’t too severe and Julie said that she has had no issues with her lungs as of yet. However, her illness has led to problems with her bowel and pancreas which inhibits her body from breaking down fats. This means that she must take enzymes daily, while she also does physio for twenty minutes twice a day to keep mucus off her lungs.

Julie and her husband Karl must bring Ruth to Tallaght Children’s Hospital once every three months, with a full health check once a year.

Though Julie said that Ruth is ‘lucky’ so far, she knows many others whose symptoms are much more severe and said she fears what the future could hold for her own daughter.

‘It’s so unpredictable. She could stay like this until she is 18 or she could get an infection next year. Some people don’t have problems until they are adults,’ she said. ‘It’s very scary. I’m in conversation with other parents whose kids are really well one week and the next, they are in intensive care.’

‘Even though I try not to think about it, it is always in the back of your mind.’

Orkambi, which has been developed by American drug company Vertex, is currently available in the US, France and Germany. The possibility of bringing it in to Ireland has given parents hope that their children could have a better quality of life. However, a ruling on the initial review by National Centre for Pharma Economics recommended that the drug is not funded due to the high cost. According to Cystic Fibrosis Ireland, the HSE and Vertex are currently in negotiations concerning on the price of Orkambi but whether this will result in a deal remains unclear.

‘It will cost about €150,000 per patient per year. I agree that the price has to be negotiated. But we need an update. It is almost six months and we still have no update on it,’ said Julie.

Following a recent meeting in the Dáil, Sinn Féin invited the committee for the Parents of Children with Cystic Fibrosis to give a presentation in the AV room in the Dail on Thursday December 1 at 9.30 a.m. Through their presentation, Julie said they hope to gain cross-party support for their plight and subsequently, get the push they need to get funding for the drug.

TDs James Browne, Paul Kehoe, Mick Wallace, Brendan Howlin and Michael D’arcy have been invited by the Wexford parents to attend. Julie said that so far, she has received a definite confirmation of attendance from James Browne, saying that the others haven’t guaranteed anything just yet.

‘We hope that when they hear the speakers and what they are going through, they will support it. Cystic Fibrosis is a very invisible disease. I knew nothing about it until Ruth came along if I am honest,’ she said. ‘We hope to gain support and push on the negotiations on the drug.’

‘Ireland has the highest incidence of Cystic Fibrosis in the world so this is more important for us than some of the larger countries.’

‘We are fighting to give everyone the opportunity to try Orkambi if they wish to. At present, we are being told that it isn’t showing enough improvement in lung function. They have to look at the bigger picture, not just at the figures. If they do, it is clear that it improves the quality of life.’

The group has pointed out how the lives of 600 people with Cystic Fibrosis could be prolonged for years if public money was better spent. For example, they have said that Wexford VEC pays €420,000 rent on an unused building, which could save 2.6 lives.

(First published in the Enniscorthy Guardian newspaper: print edition. Also available online at: http://www.independent.ie/regionals/enniscorthyguardian/news/parents-bring-cystic-fibrosis-fight-to-dil-35215465.html)