To open all pdf attachments please download
the latest version of Adobe Reader for free
SBHI WORLD CONGRESS – “WHAT’S THE NEXT STEP?”
DUBLIN, IRELAND 11TH & 12TH JUNE 2010. In Conjunction with THE INTERNATIONAL FEDERATION FOR SPINA BIFIDA AND HYDROCEPHALUS...
A RESOUNDING SUCCESS
On behalf of Spina Bifida Hydrocephalus Ireland and our voluntary Board of Directors, and together with the International Federation for Spina Bifida Hydrocephalus, we would like to extend a sincere thank you to the more than 400 delegates from Ireland and around the world who made this congress a resounding success.
In the words of President McAleese
“A familial spirit of solidarity and friendship characterises our local organisation and the International Federation. You came to Dublin to enhance the work, to search out and build on best practice, to interrogate all the pockets of knowledge and experience which need to be probed to ensure that babies, children, teenagers and adults with Spina Bifida and Hydrocephalus have access to the best treatments, advice, support networks, opportunities and lives that are lived to their fullest potential.”
This was achieved by each and every delegate who “shared their individual wisdom deeply and generously and listened attentively to those from other perspectives who shared with you. A new level of insight and enthusiasm was developed – enough to guide our next steps to a better world for those with Spina Bifida and Hydrocephalus.”
To view presentations please see below. Congress photos are available here and here.
CHAIRED BY DAVID PROUD, JOHN FULHAM, CHRISTY O'NEILL, ELI SKATTEBU, HELEN HEALY, FRANCES HALLIGAN
YOUTH AND ADULT FORUM
As young adults with spina bifida, we all too frequently encounter individuals who simply don’t know what spina bifida is. Of those individuals who have heard of spina bifida, they often have extremely negative perceptions of our disability. Awareness about the role of folate in preventing spina bifida is extremely important, but awareness about what spina bifida is and creating a positive public perception of spina bifida is equally important. The world needs to be aware of the importance of folate, but the world also needs to be aware that people with spina bifida can lead full, meaningful, and productive lives. JENNIFER FITZ-ROY. For more feedback from the youth and adult forum, please click here
BENJAMIN C. WARF MD
Hydrocephalus – ETV the way forward?
The burden of Hydrocephalus in East Africa is enormous. We have estimated that in the country of Uganda, between 1500 and 2000 infants per year develop Hydrocephalus. Taking into account the reported birth rates and populations of other countries in the region, this can be extrapolated to 6500 infants per year in East Africa and more than 45000 infants per year in sub-Saharan Africa. Unfortunately this presentation is not available online. Please contact Dr Warf directly on benjamin.warf@childrens.harvard.edu to request a copy.
TIMOTHY BREI MD
Spina Bifida - Adolescent Beliefs, Expectations and Perceptions
Adolescents with Spina Bifida, though hopeful and positive in their attitudes toward Spina Bifida and generally able to perform activities of daily living independently are not fully engaged in the range of adolescent activities and decision-making or achieving full success in the areas of self-management and work experiences necessary to make a successful transition to adulthood. This talk will discuss these findings in greater detail and ideas on how professionals might facilitate or support persons with Spina Bifida to support autonomy in persons with Spina Bifida. To view this presentation click here.
KATHLEEN J. SAWIN, DNS, CPNP-PC, FAAN
Enhancing Independence in Adolescents with Spina Bifida
Developing the skills to manage Spina Bifida and assume adult roles begins early in childhood. However, for the adolescent and emerging adult achieving these skills becomes critical. This presentation discussed research findings describing adolescent’s, young adult’s and their parent’s expectations about when these skills should be mastered as well as areas of similarity and differences between parent and adolescent. Discussion will focus on the risk and protective factors associated with adolescents doing well and ways for professionals and families to assist the adolescent in the achieving these important skills. To view this presentation click here.
MR. M.T.SATTAR. MBBS., F.R.C.S.I., M.Phil., F.R.C.S.
Hydrocephalus – From diagnosis to surgery – What’s the Next Step?
The diagnosis, treatment and management of Hydrocephalus remains a complex issue, particularly for diagnosis and prognosis of Hydrocephalus, improving current shunt treatment, predicting its success and evaluating its functionality.
Mr. Sattar discussed in detail this complex issue from diagnosis, through classification and onto management. He approached this issue from a medical prospective which was balanced through his empathetic understanding of the condition formed through his vast experience working with those with Hydrocephalus and with SBHI. To view this presentation click here.
ALICE RAJARATNAM Dip. COT. (MAOTI) Sr. Occupational Therapist, Manager SBHI Resource Centre, Dublin Branch
Drawing Smiles – Learning interventions for individuals with Spina Bifida
Alice presented her “Drawing Smiles” project which focuses on developing new learning strategies, improving ability and promoting ease of learning, though a journey of self-discovery where individuals discover their strengths, gain in self-confidence and consequently improve their quality of life. The project is about drawing as many smiles as possible!
The project was borne from Alice’s concern for children in mainstream education who struggled daily in their academic learning and performance. Educators appear to resolve their classroom problems and their lack of understanding of “Hydrocephalus” by “labelling” these children as being “dyslexic”, “autistic” and “hyperactive”, rather than seek the root cause of the problem. To view this presentation click here.
DR CAROLINE TEULIER, PH.D
Understanding motor development during the first year of life
Caroline discussed her teaching and research interests which focus on the evolution of motor coordination when humans learn a new motor skill across the life span. Caroline’s research emphasis focusing on babies with myelomeningocele and babies with typical development on the development of their walking pattern. To view this presentation click here.
DR TRUDI EDGINTON
Cognitive and behavioural implications associated with Hydrocephalus and Spina Bifida.
This focused on the implications of these cognitive and behavioural difficulties associated with Hydrocephalus and Spina Bifida and will review the specific role of self-awareness and insight. This research has investigated the role of self-perception and carer perceptions of cognitive abilities and has revealed specific areas of disparity and concordance between subjective self-perception, carer perception and actual cognitive performance (Edginton et al, 2010). These findings have important implications for the role of effective metacognition and cognitive appraisal in understanding and developing strategies to cope with the cognitive, emotional and behavioural difficulties associated with Hydrocephalus and Spina Bifida. To view this presentation click here.
TIMOTHY BREI, MD & KATHLEEN J. SAWIN, DNS, CPNP-PC, FAAN
The Experience of Parenting an individual with Spina Bifida
Parenting a child with a disability can be stressful and, in the case of Spina Bifida, is complicated by both the presence of physical challenges and the possibility of learning disabilities. In this session we will present research related to parenting in Spina Bifida, and we will have open discussion and dialogue about parenting individuals with Spina Bifida and ways for parents to facilitate promoting positive outcomes for their children with Spina Bifida. To view this presentation click here.
Spina Bifida – Self Concept, Family and Peer Relationships
Although the overall self-concept for many youth with Spina Bifida is positive, youth face many challenges living with Spina Bifida such as developing peer relationships, school-based issues, and bullying and teasing. Findings from studies of adolescents will be presented including the protective impact of close relationships with parents. Discussion will address strategies to enhance self-concept and peer relationships. To view this presentation click here.FRANCES HALLIGAN & BERNADETTE KERRY
Skin Care, Bowel & Bladder Interventions – What’s the Next Step?
Frances presented and discussed Spina Bifida as a multifaceted condition with a particular focus on bowel & bladder interventions. She offered support and guidance on the condition, what the future holds for the person with Spina Bifida and what treatments and management interventions are available. She also discussed how to meet the needs of the person with Spina Bifida in relation to their continence choices and the social stigma that can be associated with incontinence. To view this presentation click here.
Bernadette discussed the relationship between Spina Bifida, Continence and Skincare and how this relationship can be managed. She offered delegates an in-depth understanding of this relationship by looking at how the person with Spina Bifida can best manage their skincare, what strategies to use and how best to accommodate their personal needs, while balancing the importance of a regular skincare routine.
Remarks by President McAleese at the opening of the World Annual Congress of the International Federation of Spina Bifida & Hydrocephalus, Citywest Hotel, Dublin, 11th June 2010
Dia dhíbh ar maidin a chairde. Is mór on ónóir agus pléisúir dom bheith anseo inniu. Míle bhuíochas díbh as an gcuireadh agus an fáilte a thug sibh dom. I'd particularly like to thank George Kennedy, Chief Executive of Spina Bifida Hydrocephalus Ireland, for the kind invitation to officially open this, the twenty-first World Congress of the International Federation of Spina Bifida and Hydrocephalus.
I'm particularly delighted that the International Federation chose Ireland as the host venue for the twenty-first World Congress and we are delighted to welcome the Federation as it 'comes of age.' As well as being a great privilege and honour for us to host this milestone event, it is also a tribute to the excellent work and high reputation of the Irish association. We have delegates here today from almost thirty countries – to each one I extend the traditional Irish welcome – céad míle fáilte, one hundred thousand welcomes and it is a special pleasure to welcome Pierre Mertens, the President of the International Federation for Spina Bifida Hydrocephalus. To read the full transcript please click here.
Lower price of medicines may save Irish patients up to €500 per year
The Irish Pharmaceutical Healthcare Association (IPHA) announced that with effect from today, 1st February 2010, the cost of long established medicines would be reduced by 40%.
IPHA, the representative body for the international research-based pharmaceutical industry in Ireland, has set up a special website on which patients can check to see if their medicines are listed, and the price reduction. The website – www.checkthelist.ie - carries a detailed list of all the medicines and their new, lower prices. A lo-call number – 1890 876 700 – has also been set up. checkthelist.ie includes some of the most commonly prescribed medicines in the country.
Commenting on the initiative, Brian Murphy, IPHA’s Director of Commercial Affairs, said:
"We would urge patients to check the website as those who have to pay for their medicines could save €3 - €4 on every ten euro they spend. That’s a potential saving of up to €500 per year," said Mr Murphy.
The reduction in cost of nearly 300 named, familiar branded medicines is the result of an initiative by the industry to reduce costs for the State by €94m over the next 12 months.
"We were approached by the Minister for Health and Children with a request to create immediate savings on the State bill for medicines. Recognising the difficult position of the Irish economy and the tough decisions facing the Irish Government our member companies were willing to play their part in helping to reduce costs and prices. This initiative will significantly reduce costs for the State, and it will also reduce prices that patients pay directly for some of their medicines. "
IPHA said that its members will also pay an increased rebate to the HSE in respect of the manufacturer’s price of all other medicines dispensed under all of the community drug schemes.
IPHA said that its member companies look forward to continuing to work with the Department of Health and Children and the HSE in a positive manner and to finding solutions of benefit to both sides and most importantly of all to Irish patients. The constructive relationship has been a key factor in the industry’s willingness to locate so much foreign direct investment in this country - €7 billion alone in the last nine years.
Please click here for a list of medicines which have been reduced by 40% and a list of examples of the medicines therapies.
OUTPATIENT SERVICES FOR CHILDREN WITH SHUNTS
Children's University Hospital, Temple Street have issued the following information for outpatients with shunts.
The outpatient service for children with Hydrocephalus and shunts has changed in the past year.
What changes have been made to this service?
Patients who were previously followed by either Mr Fergal Quinn or Professor Martin Corbally for their shunts will now be reviewed by neurosurgery. Neurosurgery clinics take place at Out Lady’s Children’s Hospital, Crumlin and also at The Children’s University Hospital Temple Street. Mr Quinn or Professor Corbally will be referring children for shunt care by letter to neurosurgeons who attend both hospitals.
What should I do if my child has symptoms of shunt failure/malfunction?
With respect to patients with shunts who develop symptoms of possible shunt failure, they will now be assessed at Temple Street A&E Department by a neurosurgeon without the need to present to Crumlin A&E. Patients who require shunt surgery will either be operated on at Temple Street (age 0-6 years) or at Beaumont Hospital (over 6 years).
What should I do if I live outside Dublin?
Patients who live remote from Dublin should attend their nearest hospital A&E Department first for assessment. A paediatric neurosurgeon is available 24 hours a day, 7 days a week through the switchboard at the Children’s University Hospital, Temple Street (01 8784200).
If you require further information please contact your Family Support Worker. Click here for contact details.
BUDGET 2010
Brian Lenihan, Minister for Finance announced his budget for 2010 on 9 December 2009. As expected Mr Lenihan announced cuts in public sector pay and reductions in social welfare payments and child benefits. For a full break-down of how this budget might affect you and your family click here.
SWINE FLU
There is now a vaccine to protect us from Swine Flu. Over the coming months, the HSE will offer a Swine Flu vaccine to everyone in Ireland. Since the supplies of the vaccine are arriving in phases, we have to give the first vaccines to people who are more at risk of swine flu, and move on through various groups over a period of about 6 months. Remember, the vaccine is free of charge for everyone and if you get it from your GP, you should not be charged any fee. For more information click here.
On 6 November 2009 Spina Bifida Hydrocephalus Ireland sent out details and advice in relation to Swine Flu to all our members. To view the letter and attached documentation please click here.
CATHETERISATION IN SCHOOLS
Spina Bifida Hydrocephalus Ireland has been working with the National Council for Special Education and as a result we can now offer a directive in relation to catheterisation in schools.
Where an SNA is appointed to support a child with a physical disability they are required to carry out care needs as stated in NCSE Circular 07/02 under Appendix 1/04. Assistance with clothing, feeding, toileting and general hygiene. For a full copy of circular click here.
NCSE state that care needs arising from toileting, such as catheterisation are considered to be the role of the SNA and an SNA should be appointed who either has the skills or is willing to learn the skills to implement these toileting needs. The SNA shall fulfil these toileting needs until such time as the child is able to catheterise independently.
The school must also provide accessible facilities which enable these toileting needs to take place in an environment which is respectful and safe for the child. Funding for adaption’s can be sourced from the Furniture and Equipment section of the Department of Education and Science, Portlaoise Road, Tullamore, Offaly (057) 932 4300.
If you have further questions or require support in relation to this please contact your SBHI Family Support Worker.
