SBHI Board of Directors’ member John Henry has an impressive CV with more than 20 years’ experience in the construction industry and a Master’s degree in Quantity Surveying amongst his educational accomplishments.
Living with spina bifida, John, who is from Co. Mayo, has good mobility and describes himself as being very lucky health wise which has enabled him to work full-time throughout his professional career.
Working in the family business, T.H. (Contractors) Ltd. (building / civil engineering/ public works main contractor) in Castlebar since graduating from college in 1996, he says the fact that he is ambulant means that he has not experienced access restrictions.
“I have not come across any real access restrictions in terms of being able to work on site and in the office and there have been no restrictions and no discrimination from work colleagues in the profession over the years,” says John.
“Through the family construction business, I have had the opportunity for further education and work experience on different projects over the years.
“Achieving safety qualifications and a Master’s in Quantity Surveying helped me to assist in building the business.
“I have had very positive experiences in accessing employment and in continuing to work. However, my mobility is good and I possibly might have had a different experience if I was a wheelchair user.”
While John’s own experiences in NUIG and DIT Bolton Street were all good and positive, he believes that access to education for people with disabilities has improved significantly since his college years in the mid-1990s.
“There were disabled access officers in my time, however, the supports have improved since then and there has been a good improvement in the number of people with disabilities who go to college.
“Access to further education after Leaving Certificate for people with disabilities is good, however, the situation with people with disabilities gaining employment after completing their education is definitely still an issue.”
John believes that part of the problem with the low level of employment for people with disabilities is that employers are not sure of their needs and are afraid of what would be required in taking on a person with a disability.
“We need to encourage government departments to provide more funding to encourage employers to train and employ people with disabilities,” says John.
“We need state employers and multi-nationals to devise training programmes and have liaison officers to help place people with disabilities on work placement in different organisations to help and encourage both employer and employee.
“This would ensure that both employer and employee would have a good experience and it would lead to the person being kept on in the company.
“It would help to encourage employers to take on more people with a disability. If there was more liaising with government agencies and disability organisations to monitor the provision of adaptive grants etc., this would hopefully lead to more people with disabilities being in successful employment for longer.”
John is not only a high achiever professionally, as since childhood, he has been an active volunteer and participates in sporting and social pastimes.
“Through school I got involved in swimming which is my exercise of choice as I found I could do so without limitations. I was never involved in team sport as I would not have had the capability for football,” says John.
“I like keeping active, swimming helps my flexibility and using equipment such as cross trainer and rower keeps my limbs active. I also enjoy playing pool and snooker and recently beat former world snooker champion Steve Davis in a one frame pool challenge”.
When John was 16, he travelled to Lourdes with the Irish Pilgrimage Trust (IPT), the organisation which brings young people with disabilities to Lourdes each Easter.
“Having experiences as a young person of being away from home with other people with disabilities, carers and group leaders gave me the confidence to complete my education and get more confidence in myself to do the things I want to do in life.
“I really enjoyed it and continued to go to Lourdes every year for a number of years, first as carer and then as a group leader which mentally took me out of my comfort zone as I had to delegate tasks and try and pair the personalities of carers and young people with disabilities together correctly,” says John, who was also a Trustee on the Board of the IPT from 1998 to 2008.
“Lourdes and the Irish Pilgrimage Trust have a special place in my heart as I met my wife Caroline in Lourdes in 2002 whilst on pilgrimage”.
When John and Caroline moved to the Carracastle area a few years ago he began volunteering with the local Tidy Towns group and Pastoral Council as a means of staying active, getting to know people, and giving something back to the community.
And having ‘grown up’ with SBHI – his parents have been involved with SBHI’s Mayo/Leitrim/Roscommon Branch since 1981 – it was inevitable that John would become involved too. He was Chairman of the Mayo/Roscommon/Leitrim Branch from 2005 to 2015 and is currently Vice-Chairman of SBHI National Board of Directors.
“When I was about eight or nine my parents started bringing me to branch events like the Christmas party and I am still friends with a core group of five to eight members whom I have known since childhood.
“The branch was always really family based, we were all learning from each other and that same ethos is still there to the present day – there is something very special about the whole SBHI family.
“I really enjoyed my time as Chairman of the branch, learning from parents and young people and keeping up the friendships built up over the years,” he says.
“My Branch nominated me for the board of directors and I was elected a year-and-a-half ago. I am really enjoying being involved with Spina Bifida Hydrocephalus Ireland on a national level as it is good learning about all the issues in terms of funding and in continue securing improved access for people with disabilities.”
Access to brilliant healthcare helped Eddie Brett, who was born with spina bifida, defy the odds and reach the developmental milestones his parents Adrian and Lisa were told he never would.
“The doctors told me that Eddie would never be a ‘normal baby’; that he would not roll over, sit up, crawl, or stand up,” says Lisa.
He defied the odds on everything. Looking at the milestones of my other children Naima (10) and Evan (7) and comparing them with Eddie, he was only about two to three months behind them.
“He did everything, he rolled over, he sat up, he crawled, tried to stand up and I firmly believe it was down to the treatment he got from Enable Ireland in Naas, Co. Kildare. And the ongoing weekly treatment he is getting in First Steps, Patrick’s well Limerick.
“Eddie got the regular and brilliant treatment that he needed so young. Access to healthcare helped him defy the odds as it loosened his limbs and straightened his legs - without it I do not think we would be where we are today.”
However, when Eddie turned one, he was transferred into the public system in his home town of Monasterevin. Lisa says that everything went downhill because the physiotherapy staff were not given enough resources to give Eddie the regular physiotherapy he required.
Lisa has been driving Eddie to Limerick for private physio sessions for the past few years and she says that once again he is making great progress without first steps he wouldn't be where he is today.
“Eddie had surgery on his feet in January and can no longer use the Hip knee ankle foot orthosis (HKAFO) that he had. We are waiting on new ones so hopefully when he gets them he will be able to walk again.
“It has been a setback but we will battle on and we will get there.”
Eddie started in mainstream primary school in Monasterevin last month with Scoil Eimhin Naofa principal, Declan Costello ensuring that every effort was made to ensure the school building was fully accessible.
“Eddie absolutely loves school which took me by surprise as I thought he would be apprehensive but not a bother on him,” says Lisa.
“The school has been amazing. Declan Costello had ramps built over the summer so Eddie can access his class through the same entrance as the rest of his class mates. And he has a wonderful SNA in Clare Newman, who is actually a family friend.
“His teacher asked if anything needed to be adapted in class for Eddie and I told her that only if he is finding something difficult to make it a bit easier for him as he needs to be challenged.
“The school has been brilliant in terms of access and accommodating Eddie, leaving no stone unturned.”
Last month (Eddie not only started Stage School and loved every second of it unsurprisingly as he is a major showman), Eddie also followed in his big sister’s footsteps by joining the Leah Moran stage school in Newbridge.
“He was dead excited as he loves performing and I am expecting him to turn into a diva!
“Hopefully Eddie will do everything he wants to do. Nothing will hold him back, he is the most positive and determined little fella I know.
“I know he is only four but he has met every challenge and bowled it over and that is what I see going forward,” says Lisa.
“Adrian and I have never treated him any differently, even though he is in a wheelchair we have never molly coddled him and treated him the very same as his sister and brother.
“The world will never change for him, he has to change for it. The world is never going to change for anyone with a disability, they have to adapt and try to live in a world that is not okay for them.
“I know that Eddie will not be held back by any problems with access in his life, he has always been positive.
“If he needs help, we help him but he will try and try and try before he asks for help and we always let him try first before we ask if he needs help.
“There was a raised saddle on the door into his classroom which the principal was concerned about so we went down over the summer to see if it would be a problem.
“Eddie wheeled up the new ramp no problem, he did get stuck on the door saddle but he just did a wheelie right over it!
“He is so determined.”
For the past seven years Sinead and Chris Breen have tried to tackle all the challenges faced by their daughter Mikaela’s condition of spina bifida in a positive way.
Now they face the greatest challenge so far in deciding on surgery which will eliminate the health risks to Mikaela’s compromised kidneys but could reduce her mobility.
However, Sinead and Chris, from Lifford, Co. Donegal are determined to remain positive and make an informed and rational decision on surgery for their daughter to ensure she grows up as healthy, mobile and independent as possible.
Sinead explains that Mikaela, who will be eight next January, was born prematurely and it was initially thought that she had issues with her tail bone which would resolve when she put on weight.
“However, following an MRI, Mikaela was diagnosed with spina bifida. It was like being hit by a bus, we were not expecting to be told that but just had to deal with it,” she says.
“The hardest part was that we did not know if she would ever walk; that was the hardest part of the diagnosis. When Mikaela was 19 months, she started to take a step or two with a frame.
“She had a turn in her right leg, it was frustrating for her, but boots and physiotherapy corrected this. She still has a weakness in her leg, but you would not know she has a slight turn.”
Mikaela gets out of breath easily and becomes fatigued very suddenly with Sinead explaining that it is just like “flipping a switch”.
“We used to carry Mikaela in a buggy but by age seven, we were told that she really needed a wheelchair,” says Sinead.
“She adapted brilliantly, much better than we did. She is very resilient; we were horrified when we heard a wheelchair was needed but it has proved a Godsend to us all.
“We can now go on family trips and shopping trips. We embrace it now to be honest as it has given the whole family – including Aleesha Jane (9), Tiernan (6) and Christopher (2) - greater independence as we can go to more places.”
Mikaela has a tethered spinal cord - this occurs when the spinal cord is attached to tissue around the spine, most commonly at the base of the spine. As a result, the spinal cord can’t move freely within the spinal canal. This can cause the spinal cord to stretch out as the spine grows, leading to possible nerve damage, pain and other symptoms. In most cases, the condition becomes worse over time.
“Mikaela’s tethered spinal cord is the biggest challenge we are facing because as she grows, it does more damage. Urology is our biggest concern as her bladder, kidneys, and bowel are compromised,” explains Sinead.
“We now have to decide on surgery for her tethered cord. There is the risk of mobility damage but it will help urology wise.
“It is a trade-off. We have to decide what is the right thing to do, weigh one against the other. We need to assess the risks and we need to do it as soon as possible.
“We are hoping to take Mikaela to America before Christmas for tests - you have to wait years for them here in Ireland – so the only option is to take her abroad to be seen by one of the best teams in the world.
“This is our greatest challenge and we hope to make a more informed, rational decision after the tests as we will have the risk percentages.
“She cannot keep going the way she is, so we might have to take a risk with her mobility as she has to have healthy kidneys to live.”
While growing is presenting Mikaela with a lot of challenges – she is having a lot of falls and experiencing pins and needles in her legs, so she is using her chair more to contain the pain – she is very positive.
“Mikaela is such a happy perfect child. She is amazing, so loving and affectionate; a treasure. She is a tough cookie and very resilient,” says a proud Sinead.
“She hates catheterisation as she has mobility she feels it more than other people with spina bifida who may not have sensation.
“However, we try to tackle everything positively; you have to look at life as glass half full. When we go to Temple Street Hospital, we know we are one of the luckiest families.
“There are so many other families with greater challenges. If they can keep positive, why should we not be? You cannot pity yourself, you have to suck it up and get on with it.
“Surgery will transform Mikaela’s life and I want her to be as independent as she can be.
“I want her to strong willed as well and do things for herself but she needs healthy kidneys for that.”
Today, Wednesday, 25th October, is the World Spina Bifida and Hydrocephalus Day (WSBHD) as designated in 2011 by the General Assembly of the International Federation for Spina Bifida and Hydrocephalus.
IF and its member organisations – including SBHI - are using this day to raise awareness and understanding about spina bifida and hydrocephalus.
It is also a way to advocate and promote the rights of persons with these impairments.
The focus of this year’s WSBHD is on mental health log onto https://www.worldspinabifidahydrocephalusday.com/ to see the ‘Reclaiming my Health’ video
Why is there a need for a World Spina Bifida and Hydrocephalus day?
Thanks to the continuous advances in medicine, healthcare services have been drastically improved for people with spina bifida and hydrocephalus.
But despite this, many children and adults living with spina bifida and hydrocephalus still don’t have access to the right treatment and care services, and stigma and discrimination remain a reality in many countries.
The WSBHD is very significant as it reminds the public and policy makers that spina bifida and hydrocephalus are a reality and that it is imperative to increase awareness about them and improve the lives of people living with these conditions.
Here are some global spina bifida and hydrocephalus facts:
• There are at least around 1.5 million people globally living with neural tube defects.
• People with spina bifida and hydrocephalus need timely and affordable access to appropriate, specialised and multidisciplinary care throughout their lifespan.
• Spina bifida is one of the most common birth defects, with an average worldwide incidence of 1–2 cases per 1000 births, but certain populations have a significantly greater incidence.
• Spina bifida is a birth defect, which affects the development of a baby’s spine during the first 28 days of a pregnancy.
• You can be born with Hydrocephalus, but also acquire it later in life. For instance, due to an infection, tumour or traumatic brain injury, or older adults can develop Normal Pressure Hydrocephalus.
• Hydrocephalus may be congenital or acquired. Hydrocephalus may result from inherited genetic abnormalities or developmental disorders such as those associated with NTDs including spina bifida.
• Children with spina bifida and hydrocephalus need special understanding and strategies to develop and to protect them from isolation and bullying.
• Each year, hundreds of thousands of children continue to be born with hydrocephalus, for instance, 100,000 to 375,000 new cases in sub- Saharan Africa.
Join in on the World Spina Bifida Hydrocephalus Day conversation on Twitter: https://twitter.com/ifsbh; Facebook: https://www.facebook.com/ifsbh ; YouTube: https://www.youtube.com/user/IFglobalorg/, and IF website: http://www.ifglobal.org
Hastags to use include: #wsphd #hydrocephalus #spinabifida
When Micheline Clancy came to the realisation two years ago that she was actually the one placing obstacles in the way of her own happiness, she decided to make changes to her life.
“I was unhappy, I was putting on more and more weight and had to use an electric chair as I could not push myself any distance in a manual chair,” recalls 35-year-old Micheline.
“I felt I needed a change in my life. I met the right fitness instructor and it went from there.
“I was going through a bad time for a long time, saw post on Facebook about boxercise and thought I would like that and would try to get fit.
“I started off in Fitness Factory in Ratoath, Co. Meath with a personal trainer, June Crawley who adapted exercises for me.
“June became my hero and inspiration throughout this time. She pushed me to join a gym, Tone Zone Gym in the National Aquatic Centre, to avail of more equipment and be more independent by doing my own workouts.”
Micheline, who is now back in a manual wheelchair, completed the Darkness into Light run for Pieta House last year and completed the VHI Women’s Mini Marathon this year.
“I am much happier now, there has been a great sense of achievement. I am still a work in progress but I now love the gym and exercise – I get up in the morning and the first thing I do is go to the gym!
“Before exercise was not a big thing for me, it was a big effort and I had no interest in it. Now, I am addicted to it and it is part of my life,” she says.
“I can now see the importance of it and I can see changes it has made. Not only has it changed my fitness, but it has been great for my emotional and mental well-being.
“Now, I want to promote it and help other people and let them know how easy it is and how important it is. I am exercising and eating healthily and it is benefitting my overall health and I would recommend it to anyone.”
By taking steps to lose weight and get fit, Micheline says that she is taking control of every aspect of her life and found that setting goals has helped her along the way.
“My next goal is a skydive! Darkness into Light and the Women’s Mini Marathon were also challenges. However, the biggest one was to go on SBHI’s SHINE respite programme away week to England this summer.
“I could not go last year because I was still in my electric chair. I really wanted to go so it was an incentive to me to keep up my exercising and healthy eating and aim to get myself back into a manual chair.
“It was such a sense of achievement to be able to go and it was an amazing experience and I was able to do all the adventure activities, even zip wiring!
“I now know that a person themselves places obstacles in their way. When I had all the weight I found it hard to transfer myself from chair, now I can do it myself and do not need any assistance.”
Micheline has always been an independent person; she has lived in her own apartment for the last nine years and now that she has done so much in the last two years to improve her health and mobility, she wants to help others to do the same.
“I recently qualified as an executive life coach and I am in the process of setting up my own business. I want to help motivate other people by working with them on personal goals and what they want to achieve,” she says.
“I have found that yoga, meditation, and mindfulness they have helped me big time. I have also done a number of positivity workshops.
“I am now doing a lot of speaking in that area. My passion is to help others and it is great that I am now following my passion.”
‘There are no obstacles, only challenges’. This is the mantra that SBHI Youth & Respite Co-ordinator Helen Riney lives by.
Helen has been presented with challenges over the past two years, however, she has faced them together with her fiancé John Williams. And, thanks to their combined determination, this couple is now preparing to move into their first home together.
Like hundreds of couples around the country planning to get married, they took on the stressful task of trying to buy a house together in an Irish property market where demand is currently far outstripping supply.
Unlike most other couples, Helen and John faced the additional challenge, as wheelchair users, of having to find an accessible home or one which could be easily adapted to their needs.
“We were very positive about it from the very beginning, we did not want to let anything stand in our way,” says Helen.
“When we got engaged and were planning to get married, we knew that we had to be living independently together.”
“We just wanted the same as everyone else,” added John.
“We were very determined and positive the whole way through, not going to give up,” says Helen.
John is a first-time buyer and, apart from a very short-lived experience, has never lived independently away from his family home.
“I moved out to IWA independent living apartments in Clontarf in 2008. It was a disaster and I only lasted one week,” he says candidly.
“My mum got ill in late 2004 and I knew I needed to get my act together. My mum was not going to be around forever, my brothers and sisters had lives of their own, so I knew I needed to become independent.
“However, for me, living independently was a disaster on so many levels: I had not prepared myself and I did not even have a proper bowel routine in place.
“So, I went home. Then, thanks to this amazing woman (Helen) I decided to give it (independent living) a go again.”
For John, asking Helen to marry him in December 2015 was the first step towards gaining his independence and it was, he says, a mixture of fear and excitement.
Helen has been living independently since her college days and bought her own apartment a number of years ago.
“I always wanted normal things and my parents always wanted me to be the same as everyone else,” says Helen.
“I lived on my college campus in north Dublin for three years. I was going home at weekends to my parents’ home in south Dublin, but gradually I extended my time on the college campus, as I did not want to go home as much!
“For my third year Erasmus, I went to Germany for a year – that was a real kick in the backside - doing everything for yourself from self-care, personal care to washing and cooking.
“I was not relying on anyone else, I did not have that option, but it shows what can be done with having the motivation to change.”
When John and Helen commenced their property search, Helen admits to being initially negative as she was not approved for mortgage protection on her apartment and she feared this would be the same with a house.
However, as her apartment had some accessibility issues, including a lift which kept breaking down, it was not practical for her and John to stay there, so the house hunting had to start.
“The mortgage broker we engaged was brilliant. He was very positive but also very honest about our expectations and the reality of our medical difficulties. He did a lot of work on mortgage protection for us,” she says.
“I got a waiver on mortgage protection and Helen was approved for it. The main obstacle is about how disability is seen. We both have spina bifida and it is seen as a life limiting condition,” adds John.
John and Helen looked at “tons” of houses and eventually settled on a dormer bungalow in Naas. Their offer led to some negotiation, which Helen says was stressful as they had to retain a budget to make the house accessible.
“Eventually, we met in the middle over the price. The elderly couple selling, wanted us to have their house because they felt it would be a nice neighbourhood for us to live in,” says Helen.
“However, once our offer was agreed, the estate agents started exerting a lot of pressure on us to get our paperwork and money sorted, so we got a solicitor to deal with them on our behalf - we would have been lost without that solicitor.
“We used mainstream companies and specialist companies to get the accessibility work done which included a new accessible kitchen, two adapted bathrooms, and a new wet room.”
Contact was made with the local authority on John and Helen’s behalf in relation to the possibility of them getting a housing adaptation grant. They were informed, through that contact, that they would definitely not get a grant due to their combined income being over the threshold and that there was no point in them applying.
“We thought that was unfair to be assessed jointly as individually we would have qualified and not having the grant put us under more financial pressure,” says Helen.
“Then we could not get a stair lift to suit both our needs, we tried everyone going, so we had to go for a through floor lift at twice the price.
“As we had no adaptation grant, we did have to get some financial assistance from our families to buy a second hand through floor lift.”
Now, that Helen and John are hoping to move into their new home at the end of October, they feel that overall the house purchasing process has been a positive one for them.
“We knew where we wanted to be living, we knew we are getting married, so we have to live together,” says Helen
“We will have to learn how to share tasks; as we both have disabilities, we will have to look after all our own stuff individually too.
“I think that there are a lot more obstacles for people with disabilities, nothing is straightforward, but it has been worth it as we want to be independent. We still have the same goals as we had at the start of this process.
“We never got to the stage where we said it is not worth it or we wanted to halt it.”
John admits that he has done a lot of growing up since deciding to get married and live independently.
“It is all about breaking ties, moving out of my childhood home and living with Helen. While we will have backup and help, it will not be available to us 24/7, so we will have to get on with doing things for ourselves.”
Both John and Helen agree that a key aspect to both of them living independently, maintaining careers and being able to move out of Dublin to Naas was being able to drive and having their own cars.
“Still, it will be a big transition to independent living together in terms of doing everything together: we will work hard together at being patient with each other!
“For me it has been a change of mindset from being cared for to doing things for myself – I got a nudge from Helen! I started counselling and it is making me grow up. I am dealing with a lot of stuff in my personal life and in transitioning to living together with Helen.
“I have been self-catheterising since I was seven or eight but my bowel care was a complete mess. I did not have a life, I was constantly worried and stressed if I went out and about.”
“Yes, for John that change in mindset was that little last thing to self-reliance. We all have to work at independence and learn how to not depend on others,” says Helen.
“For me, it was all about breaking the dependency chain and I am so glad that I have.”
Members of the public sometimes express surprise when they see six-year-old Alicia Riordan wheeling herself along beside her parents Joe and Jacqueline and that they are not pushing her wheelchair.
However, what people do not understand is that Alicia, who lives with spina bifida, is a very independent and capable child and is able to – and wants to – take charge of her own mobility.
“We do not push Alicia’s chair when we are out, she just follows behind at her own pace,” says Joe.
“We often hear people saying things like ‘look at that poor child’. However, Alicia wants to push herself, she is able to do it.
“Family and friends even say we could do more for Alicia but we just do not do things for her that she is able to do for herself.
“There is no point in molly coddling her as she would then not be able to do anything for herself.”
Joe and Jacqueline, who live in Cashel, Co. Tipperary, knew when Alicia was born that she would never walk, because of where she had the lesion on her spine. This is something that they have had to learn to deal with, however, Alicia has always accepted it.
“From the start Alicia knew that this was the way she was. Even now when she is on the floor and her legs curl up into ball, she will mutter ‘stupid legs’,” says Joe.
“She knows that her legs do not work, but she has never known anything different. She is tough and independent and we have always encouraged her to do things for herself.”
Alicia attends a mainstream primary school and while she is a little bit behind her peers, Joe and Jacqueline have no doubt that she will successfully complete her primary and secondary school education, and even go onto third level if she wishes.
Parents always worry about their child’s future but Joe and Jacqueline, who have two other children Nathan (14) and Rebecca (11), accept that their concerns are compounded by Alicia’s disability.
“Hopefully Alicia will grow up to be in a position to live her life as an independent adult but I do worry about what will happen if she is unable to do that,” admits Jacqueline.
“In years to come when Joe and I are old, how much assistance will Alicia need? And if she needs assistance, who will give it to her?
“However, we do our best to remain positive and believe that she will be able to do her best at school and will be able to be independent – she is as bright as a button.”
Joe and Jacqueline understand that Alicia will have difficulties to face as she grows up, not just in living with her disability but in dealing with ignorance and discrimination.
“When we are out, we are constantly seeing people stepping away from Alicia’s wheelchair, trying to avoid it at all costs,” says Joe.
“All we can do is keep trying to raise awareness and keep repeating the message in the hope that people will see Alicia as a person first and not her chair.
“We have found that talking to people about Alicia has been a great help, particularly through SBHI talking to other families and to our Family Support worker has been a great support.
“It is good to know that you are not alone and that there are other families going through what you are and who are willing to help and lend support.
“And I do not think that we would have gotten on as well as we did without our SBHI Family Support worker who has been great – I think without her we would have broken down.
“Alicia is now doing fantastically well and we would not change her for the world.”
The "We Need Our Heads Examined" campaign for action on neurorehabilitation is contacting elected representatives in the lead up to the Budget, calling for investment in neurorehabilitation services as a priority.
The campaign, which is supported by 17 organisations representing people with neurological conditions, is calling for €7m investment in 2018 to begin to address the huge unmet need for neurorehabilitation services.
6th September 2017
Earlier in the year I was asked to meet with a group of parents who have children with Spina Bifida and/or Hydrocephalus. We met and discussed a few key issues including: care for children in relevant children’s hospitals; issues around scoliosis care; and, what could be done to achieve real change in these areas.
The meeting was intense and the detail which emerged was very complex. It was clear that any progress on these issues would require a sustained and targeted response, delivered with patience and a strategic focus.
In order to make real progress on this, it was suggested that a core group come together to narrow the focus of advocacy work so that a plan with achievable aims could be established and pursued.
On 5th September 2017 I met with this group and it was agreed that the Parents’ Advocacy Committee would work with the CEO, relevant staff/Board members, affected parents/carers, and all other relevant stakeholders, initially around three main areas:
- Clarification regarding the current and future plans for the paediatric Spina Bifida clinics in Ireland
- A vast improvement for the care of children who have both Spina Bifida and scoliosis
- A commitment for better education to be provided for obstetricians regarding a prognosis of Spina Bifida and/or Hydrocephalus in a developing child
A plan will now be established by the committee so that the appropriate actions can be taken and reflected upon. The responses we receive will be shared by the committee so that all those affected are kept up to date.
This is very much a collaborative process, driven by a group which is intent on realising real change. If you would like to get involved with or contribute towards the work of the Parents’ Advocacy Committee, please contact Amanda Coughlin at:
Phone: 085 143 4953
A Kerry based gym instructor’s ambitious target of raising €100,000 for people in Ireland who live with Spina Bifida and/or Hydrocephalus has now reached the €1,000 mark.
Following on from his ’12 Marathons, 12 Days’ in 2014, when Shane Finn raised €36,000 for Spina Bifida Hydrocephalus Ireland (SBHI), the unstoppable Kerry man is now back with double the distance – a total of 628.8 miles – to conquer!
Shane Finn is set to run 24 marathons in 24 days this summer and SBHI is supporting him all the way.