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)

Frank is our new mayor – Wexford People, July 9 2016

From Wexford’s first rural mayor came Wexford’s first farming mayor as Cllr Ger Carthy handed over the rope and chains to new mayor Cllr Frank Staples last week.

‘I am deeply honoured to be elected mayor of this historic borough,’ Cllr Staples said in his acceptance speech following last week’s 5-4 vote at the Wexford Arts Centre. Cllr Tony Dempsey was elected as deputy mayor following a 5-4 vote.

The proud Mayglass-Ballymore man began his term of office by thanking his wife Trish, seven sons, friends, family and everyone who showed their support to him. He also thanked his aunts Eva (88) and Janie (90) for their support, along with his sister Mary who was unable to make it on the night.

Cllr Staples (58) outlined his main priorities for the coming year, of which he said mental health is a key focus.

‘We have a mental health crisis at the moment and the mental health services are struggling to deal with it. We need a dedicated 24/7 mental health facility to facilitate people in crisis.

‘We have a situation at the moment where people in desperate need of help are being turned away from hospitals because of lack of services.’

Cllr Staples said that from his own experience, he has learned that sometimes the little things can help.

‘Speaking from experience, sometimes it’s the little things that count.

‘So, don’t be afraid to ask, call or send someone a text if you know they are going through tough times, because you may be the person they open up to if you reach out to them.’

‘If you take nothing else from this evening but that you can make a positive impact on other people’s mental health, it will be worthwhile.’

Cllr Staples said his other priorities include job creation and advancing projects such as the development of Min Ryan People’s Park, Trinity Wharf Development and the Technological University for the South East. He also spoke about the Local Economic and Community Plan, which he said is ‘crucial’ for growth in the Southeast.

A tribute was also paid by Cllr Staples to his friend and colleague the late Cllr Fergie Kehoe.

‘A lot has been said about Fergie and I suppose if I was to pay him a compliment, it was hard not to be his friend, because once Fergie got to know you he would be your friend.’

Outgoing mayor Cllr Ger Carthy received unanimous praise from his colleagues for his year in office, with many paying reference to the more difficult tasks he has taken on over the past 12 months.

All of the councillors paid their best wishes to the new mayor, including Cllr George Lawlor, who joked that he was Wexford’s first farming mayor.

Following the election of deputy mayor Tony Dempsey, Cllr Staples said that he was delighted to have him on board.

‘I look forward to working for Wexford Borough and District with you in 2016 and 2017.’

(First published in the Wexford People newspaper: print edition. Also available online at: http://www.wexfordpeople.ie/news/frank-is-our-new-mayor-34870319.html)

Couple vow to fight HSE decision to relocate severely disabled daughter from Dawn House – Wexford People, November 3 2015

A couple whose severely disabled daughter can no longer avail of the services at Dawn House have said that they ‘won’t give up’ in the fight to help their loved one.

Ferrybank residents Noel and Kathleen DeHora had been bringing their daughter Leah to the HSE-run respite centre for 24 years until they were told last September that she would be moved elsewhere.

Following months of unresolved discussions since then, the couple decided to take action by arriving at the centre with their daughter on the day she was due to be relocated.

‘We have always kept Leah’s life private and I didn’t want it to come to this,’ said Kathleen. ‘All she needs is to be comfortable, dry and fed and have a bit of interaction. Hopefully with moral support we can do something. People power is the only thing that can change this.’

Over fifteen friends and family members came out to the centre on Monday to support the couple’s plight. Cllr Anthony Kelly, who was a neighbour of the DeHoras in the past, was one of the people who met them outside Dawn House.

‘We need to try to resolve this peacefully,’ said Cllr Kelly on Monday morning. ‘When I went into Dawn House, they said that the services are inadequate for Leah. What we need to do is talk about this and try to find a solution.’

In an attempt to resolve the issue, Cllr Kelly arranged to attend a meeting along with four representatives of the HSE and the DeHora family. However, speaking after the discussions yesterday evening, he said that no progress was made.

‘We may have to resort to protesting about this and I am prepared to stand with the family,’ he said. ‘The HSE representatives said that they might seek an injunction if we do protest but they can’t if we stay within the confines of the law.’

Leah, who is a non-resident at Dawn House, suffers from severe epilepsy and scoliosis. She was one of the first service users at Dawn House and according to Kathleen, herself and her husband were very happy with how she was being treated. However, in September 2014, they were informed that Leah’s situation would soon change.

‘I got a phone call from the HSE asking Noel and myself to come to Ely House. When I went in, there were a number of representatives of the HSE in the boardroom. They told me that they intended to move Leah and that HIQA were behind the decision due to funding cuts,’ explained Kathleen. ‘My whole world fell apart that day.’

Noel and Kathleen were invited to a second meeting but were later devastated when the possibility of a bed for Leah in the Wexford area was ruled out.

Leah was offered a place at the Millbrook facility in Enniscorthy, which would require her to be collected from her home in Ferrybank each day at 9 a.m. She was due to begin attending the centre on Monday. However, according to Noel, this is not a feasible solution.

‘It wouldn’t be good for her at all,’ he said. ‘We even got a letter from her neurologist who said that moving her wouldn’t be good for her epilepsy. He said that it would be detrimental to her health.’

Cllr Kelly said that he brought up the neurologist’s concerns during Monday’s meeting, but ‘they said that they were complying with a HIQA request and that they have Leah’s best interests at heart,’ he said. ‘The HSE is in ribbons. They don’t seem to me to have the patient’s interests at heart at all.’

Kathleen echoed what her husband said earlier, saying that the idea of taking up a place at Millbrook was an ‘impossibility’.

‘It takes us hours to get her ready and there’s is no way that we can have her ready by 9 a.m.’ she said.

Kathleen said it would require Leah to return home each day at 4 p.m.

‘I suggested at the meeting that I could drive her up myself to Enniscorthy at 11 a.m. every morning if they bring her back to a home such as Dawn House and give her tea. The HSE representatives said that it was not possible,’ she said.

‘I would be fearful of allowing somebody into my home in the evenings. Agency nurses move around to different homes and it can take the nurses nine months to get used to a service user.’

Leah is the only non-resident to avail of the services at Dawn House, something that Kathleen feels has made her an ‘easy target’. She said that earlier this year, she was told that they didn’t want to mix residents and non-residents as it might cause a disturbance.

‘That really was the pits. Leah is one of the quietest children that there is,’ she said. ‘We contacted HIQA about this and they said that they would never single out one person for being a non-resident.’

A member of the DeHora family who wished to remain anonymous said that the ongoing issue was putting great strain on the family.

‘It has deeply affected everyone,’ she said. ‘It’s terrible to think that people in the health service can just do this.’

The family member said that the staff at Dawn House were not to blame as their ‘hands are tied’. Cllr Kelly echoed these sentiments, saying that the staff provide an ‘excellent service.’

‘We aren’t attacking Dawn House at all. We’re attacking the system,’ he said.

Kathleen agreed, expressing her satisfaction with the service that her daughter has received until now.

‘Dawn House have been fantastic. We couldn’t praise them enough,’ she said.

However, as their situation remains unresolved, she said she is worried for Leah’s future.

‘From the beginning, we were given the idea that even if something happened to us, she would be looked after. This doesn’t seem to be the case if they can’t even look after her when we are here to fight for her,’ she said. ‘We don’t have a life and we are happy with that. As long as Leah is healthy and happy, that is all that we want.’

A representative from Dawn House was unable to comment on the matter on Monday. However, the HSE have released a statement on the issue in which they said they are in ongoing communication with the family.

‘At all times, the HSE’s services are acting in the service user’s best interests. In addition, on the grounds of confidentiality of treatment, the HSE will not be publicly discussing any individual’s circumstances. We will do so, however, directly with a service user and/or their families/representatives.

‘Specialist day services in the Wexford area are provided at the state of the art Millbrook facility in Enniscorthy, to and from which the HSE can arrange transport suitable to the needs of service users around the county,’ said the statement.

(First published in the Wexford People newspaper: print edition. Also available online at: www.wexfordpeople.ie/news/couple-vow-to-fight-hse-decision-to-relocate-severely-disabled-daughter-from-dawn-house-34168187.html)