Joint Oireachtas Committee on Health
Thursday December 6th 2012
Representatives:
George Kennedy (CEO),
Edel Browne (Manager: Family Support Services),
Hazel McGeough (Family Support Worker)
Introduction
In 1968 a small group of parents whose children had Spina Bifida and/or Hydrocephalus
established a voluntary organisation which would highlight awareness of these two
conditions and support families, individuals and carers who were affected. Their
determination and dedication resulted in the establishment of The Irish Association for
Spina Bifida & Hydrocephalus (IASBAH). The association was formed by parents who were
committed to taking action to improve the prospects of people who were living with Spina
Bifida and/or Hydrocephalus in Ireland.
These parents were pioneers who laid the foundations for what is now a nationally
recognised organisation. Their optimistic spirit encouraged them to affect real change for
people who had the conditions, their families and carers.
In April 2008 the National Association of Spina Bifida Hydrocephalus Ireland Ltd was
formed, and trades as Spina Bifida Hydrocephalus Ireland (SBHI).
Today
Spina Bifida Hydrocephalus Ireland continues its tradition as a voluntary organisation, with
an elected Board of Directors made up of voluntary members and parents as well as
branches in all four provinces which are run by groups of local volunteers. SBHI has
developed and changed in many ways since it was first established. However, its dedication
to its members has remained consistent.
The association has over 4000 members nationwide consisting of, those with Spina Bifida
and/or Hydrocephalus, their parents, siblings, family, friends and carers.
The biggest strength of the association continues to be its members and volunteers. Our
members have a wealth of knowledge and experience which is invaluable to the association
and its future development.
There are currently eight branches nationwide that run services for their members at a
regional level. These branches are also involved in the National organisation through their
involvement on the National Executive Committee, which meets quarterly.
With the assistance of Government funding and support from the HSE the association has
expanded its services nationally. As a result The National Resource Centre is now a
professionally run centre, which employs a CEO, a Family Support Team, a Youth and
Respite Team as well as administration support in the National Resource Centre.
Company Structure
SBHI’s Services:
Family Support Services
The Family Support service provides Seven Family Support Workers (FSW) nationally to
individuals with Spina Bifida and/or Hydrocephalus, their families, carers and professionals.
The aim of the service is to work with our members from time of diagnosis or the time of
birth through to adulthood. We provide guidance, advocacy, emotional and practical
support, conducive to the needs of our members, their families and carers.
Our Family Support Service has been in existence since 2003. We have a network of workers
who provide services nationally to individuals with Spina Bifida and/or Hydrocephalus, their
families and carers.
The aim of the service is to work with our members, their families and carers, by providing
guidance and information in an environment which is conducive to their needs.
The Family Support Worker (FSW) will visit individuals and/or families in their own home, in
hospital, in school or in the work place. The nature and delivery of our service is a direct
response to the needs of our members, their families and carers. We provide information,
support and guidance from the time of diagnosis, which can occur during pregnancy or at
the time of birth, through to adulthood.
We provide healthcare professionals, education professionals and those working within the
Disability sector with information, resources and guidance, ensuring that our members
receive the best possible provisions from their multidisciplinary team.
THE ROLE OF THE FSW
The role of the FSW is very diverse and is guided by the needs of our members, their
families and carers. Our aim is to work with our members, their families and carers by
providing guidance, advocacy, emotional and practical support.
Sometimes all that our members need is someone to listen to them. This is an essential part
of the Family Support Workers' role. We are a confidential*, non-judgemental and
respectful service bound by the Data Protection Acts 1998 and 2003.
There are Family Support Workers throughout the country.
* Confidentiality will not be breached unless a person (service user or otherwise) is deemed
to be at risk of or discloses an allegation of sexual abuse, self-harm, suicidal intention or
criminal activity. SBHI staff are bound by a duty of care to report such allegations.
WHO ARE WE?
The Family Support Team has people from nursing, education, and social care backgrounds.
Our team can assist you by providing information and support on medical matters, youth
development, education, continence management, mobility, independent/supportive living,
relationships and sexuality, entitlements, employment, advocacy and outreach services.
HOW CAN WE HELP?
Medical
Health professionals' from midwifery and paediatric hospitals contact us at the time of
diagnosis and the FSW team can link up with families in the community to provide
information, support and guidance. We liaise with you and health professionals such as
consultants, therapy services, continence and pain management advisors etc.
We offer support and guidance that can empower you to manage your own specific health
needs.
Hospital
Your FSW can provide you with a number of different supports while you or your family
member is in hospital. We can visit you in hospital and liaise with your medical team and the
hospital social worker. We offer you support by helping to make sense of 'medical jargon',
to ensure you are getting the best possible up-to-date treatment and by empowering you to
ask the most relevant questions. We can also help by sitting with you and talking through
your fears and anxieties.
Education
We provide help and support through pre-school, primary, post-primary, resource centre
and third-level education by providing information, resources and advice in relation to
education supports and provisions. We also provide training to teachers and special needs
assistants, specific to the needs of the individual with Spina Bifida and/or Hydrocephalus.
Housing
We can liaise with you and the appropriate council and government bodies in relation to
your housing needs. This may involve guiding you through the process of housing
applications, housing adaptation and mobility aids grants, rent allowance or community and
residential housing.
Entitlements
There are specific payments that you may be entitled to. We can link you in with the
appropriate government bodies and guide you through the application process.
Advocacy
If you would like someone to accompany you to a hospital visit, or to a school review, we
would be happy to do so. At other times you may just like to know what your rights are. We
are also happy to provide information to schools, colleges, universities, or employers.
Employment
Your FSW can provide you with resources and information on employment. We can guide
you through your work options and put you in touch with the appropriate work and training
agencies specific to your needs. We offer advice on work-place employment and supported
employment options and provide information and guidance to your employer and can act as
your advocate should you encounter any employment difficulties.
Social Needs
We offer support and guidance on planning for the future, building personal relationships or
responding to social barriers that may be encountered. Your FSW can offer a number of
supports in relation to relationships and sexuality. We provide information and guidance
and can put you in touch with sexuality advisors.
Continence Management
We have a number of resources and information available on continence management. We
can link you in with consultants and community continence advisors.
We also have an in-house continence advisor who offers advice and support on a monthly
basis through seminars and phone support.
Seminars
Each year the Family Support Workers organise and run seminars to inform and educate
members, parents/carers and also professionals. To-date topics have included: Spina Bifida,
Hydrocephalus, Relationships & Sexuality, Employment, Education, Independence and Social
Issues, Transition from Paediatric to Adult Services, Equality & Entitlements, Mobility
Training and Awareness Programmes.
Lobbying
Your Family Support Workers are involved in lobbying the government to improve services
and access for our members. Such issues include improved paediatric neurosurgery services,
a transition programme to improve communication between paediatric and adult services.
We support the research of Folic Acid and run awareness programmes and lobby
government for mandatory fortification of Folic Acid in our foods.
Outreach
As a direct response to our members needs we have run yearly family respite weekends and
monthly sports inclusion programmes. For our junior members we offer summer activity
days and day trips. To-date our monthly support groups, which are run nationally, facilitate
first-aid training, peer-to-peer support and study days covering topics such as education,
continence management and skin-care management. The agenda for the support groups is
led by the needs of our members.
The FSW team also work as co-ordinators for SHINE (Spina bifida, Hydrocephalus Ireland
Nurturing Empowerment) formerly known as Summer Project, Weekend Respite Breaks and
the Sports Adventure Week. We also work closely with our Youth and Respite Services to
ensure that the needs of our members are being met through respite breaks, sports and
social events.
EDUCATION OFFICER
The Education Officer position commenced in October 2011. The Education Officer for Spina Bifida
Hydrocephalus Ireland is Katie Kelly. Her remit is to work with SBHI members in developing their
awareness of their condition(s) through educational seminars e.g. A.G.M. educational sessions,
Kidney Awareness Day, first aid and people lifting courses for parents, employment readiness for
members etc. As well as working with members, their parents, family and carers, the educational
officer also works with the mainstream community to create awareness about the conditions Spina
Bifida and Hydrocephalus. She works with the Pre-schools, Primary schools and secondary schools
where members are in attendance to discuss the conditions and implications for teaching and
learning with teachers, SNAs and resource teachers. She speaks to University/College level students
undertaking courses such as; social care, pre-nursing, nursing, special needs, teaching etc. about the
conditions Spina Bifida and Hydrocephalus. She also maintains the website and other forms of social
media such as Facebook and Twitter to ensure that the information provision is current and relevant
as well as creating awareness about the organisations and the conditions Spina Bifida and
Hydrocephalus.
YOUTH & RESPITE SERVICE
The Youth and Respite Service has been in existence since 2003. It provides services
nationally to people with the disabilities Spina Bifida and/or Hydrocephalus, their families
and/or carers.
Respite and youth services are provided and developed in line with what our members need
and ask for.
We encourage our members to enjoy a healthy, social, active and fulfilled life, to avail of all
education and employment opportunities and to ensure the development of a progressive
society that is inclusive, aware and accessible to all.
THE YOUTH AND RESPITE TEAM
A small team of specialist full time staff is based in the National Resource Centre (NRC),
Dublin who develops and organise all youth and respite services nationwide. Temporary
contract staff, such as nurses and occupational therapists, also work on SHINE and weekend
getaways annually. Voluntary youth officers are based in branches around the country and
run events locally for specific age groups. Long and short term volunteers from nursing,
education, social care and a variety of other backgrounds assist with respite breaks, annual
events and SHINE in particular. Training for volunteers and contract staff is facilitated and
organised by specialist staff at the NRC.
WHAT DO WE DO?
The Youth and Respite Team develops and provides services that are conducive to the needs
of our members. Our services include SHINE, Weekend Getaway and Mid-term Breaks,
Sports Adventure Away Week, National Sports Fun Day, Youth Forum and Youth Inclusion
Projects. The Youth and Respite Team also provides support, backup and input into all
conferences, seminars and family weekends organised by SBHI. For more in depth
information on our service please see below.
SHINE
(Spina bifida, Hydrocephalus Ireland Nurturing Empowerment), formerly known as Summer
Project.
Every year we run SHINE, a residential Summer Independence Training Project which caters
for teenagers and young adults from across Ireland with Spina Bifida and/or Hydrocephalus.
SHINE takes place over five separate weeks in different venues and each week is tailored to
meet the needs of specific age groups. In the region of 100 participants attend SHINE every
year, along with a dedicated team in excess of 80 volunteers and 65 staff.
Primary Aim
The primary aim of SHINE is to encourage participants to develop their independence and
social skills in a fun and safe environment. SHINE also offers valuable respite for the
participants, their parents/and or carers.
National Sports Fun Day
A National Sports Fun Day is held annually, usually in September of each year, where
members of all ages and their families can take part in a number of track, field and indoor
events. It provides an opportunity for both able bodied and people with disabilities to
participate together in sporting activities in a fun and inclusive environment.
Youth Forum
This is open to all young adult members and facilitated by branch youth officers with
support from staff at the NRC. It is a safe and confidential environment where specific topics
relevant to Spina Bifida and Hydrocephalus are freely discussed. Ideas are thrashed out and
youth projects organised such as lobbying the government or relevant bodies to improve
accessibility, the inclusion of young people with disabilities in mainstream activities,
organising exchanges or volunteering in Ireland or abroad, plus many other topics of
relevance. If you are interested in joining the Youth Forum, please contact your local youth
officer or Ann Re or Andrea Fox, SecrThe Youth Forum meets regularly throughout the year
and have recently started up a Superstars Bowling League.
Events
We celebrate seasonal events with activities for all members, their families and friends. Pay
close attention to the calendar of events around Valentine’s, Easter, Halloween and
Christmas!
Youth Inclusion Projects
We believe in integrating our members in mainstream youth clubs and run a number of
local projects in conjunction with professional youth services.
SBHI Resource Centre, Clonshaugh
The SBHI Resource Centre is located in Clonshaugh, Dublin 17. The centre offers a variety of
different life enhancing opportunities to our members through One-to-One Computer
Courses, Arts and Crafts, Social Outings, Hand Foil Printing, Daily Living Skills, and Personal
Development Training. All training is person centred and is developed and designed to meet
the individual specific needs of our members.
All of the above is supported by our dedicated team of a Fulltime Senior Occupational
Therapist and Assistant Occupational Therapist. The team works on a daily basis to support
learning and personal development of people with Spina Bifida and/or Hydrocephalus.
Spina Bifida literally means 'split spine'
Spina Bifida is a relatively common condition, which affects about one in every 1000
children born per year in Ireland. Ireland has one of the highest incidences of Spina Bifida
births in the world. Spina Bifida is the most common neural tube defect (NTD) which causes
incomplete development of the spinal cord. Translated, it literally means 'split spine'.
In 2010 there were 79 children born with an NTD in Ireland. This statistic is from the
EUROCAT statistics. There has been a noticeable increase in the numbers of children being
born each year with an NTD from 2009 onwards. 2011 statistics are currently being analysed
and will be available over the next few months.
Types of Spina Bifida
Spina Bifida Occulta
This is known by some people as 'hidden' Spina Bifida and is very common. The split in the
bone of the spine is small and the spinal cord and main nerves cannot bulge out and so little
or no damage is done. The only thing to see on the back may be a dimple, tuft of hair, or a
red mark. Someone with Spina Bifida Occulta may not have any problems at all and
probably wouldn't know they had this condition unless an x-ray of the back was taken.
Antenatal tests usually do not detect this type of Spina Bifida, before birth.
Meningocele
(Pronounced men-in-jo-seal)
In this type of Spina Bifida, the split in the bones is not big enough for the spinal cord to
come through, but a 'balloon' of skin filled with fluid and blood vessels bulges out. This fluid
which comes from around the spinal column is called cerebro-spinal fluid (CSF). Usually the
nerve supply is not affected. The degree of disability is usually less severe than
Myelomeningocele, but can only be determined as the child develops.
Myelomeningocele
(Pronounced my-lo-men-in-jo-seal)
This is the most common form of Spina Bifida. The areas effected are dependent on the
location of the split. The split contains the spinal cord and nerves are held in the sack which
will also be filled with fluid. The spinal cord and nerves become exposed and the degree of
damage will determine the extent of disability. A Myelomeningocele is most frequently
found in the lumbar area, but can occur anywhere along the spine.
Encephalocele
(Pronounced en-cef-a-lo-seal)
In the minority of cases of NTD's, the split is high up and involves the back of the head
(skull). There is a balloon-like swelling but this does not contain important nerves of the
spinal column. Some Encephaloceles are small, covered with skin and the children usually
grow up without major implications. Sometimes, however, it is large and may contain some
of the brain and this can severely affect the baby's eyesight and can cause learning
disabilities. Sometimes, however, they can contain large volumes of brain tissue, so that the
reaming brain is small, poorly developed and severely Hydrocephalic.
Anencephaly
(pronounced an-en-cef-a-lee)
What is Anencephaly?
Anencephaly is a congenital birth defect belonging to the family of Neural Tube Defects. It is
the most common neural birth defect and is related to Spina Bifida. A neural tube defect
(NTD) is a congenital malformation which occurs between the 3rd and 4th week
(approximately 20 to 28 days) after conception, usually before a women even knows she is
pregnant. In normal development the neural tube folds and closes to form the brain and
spinal cord. In the case of an NTD, the neural tube is unable to close completely.
Anencephaly occurs when the cephalic or head end of the tube fails to close properly,
resulting in the absence of the major portion of the brain (cerebellum), skull and scalp.
Their meninges, both hemispheres of the brain and the vault of the cranium (skull) are also
missing. A rudimentary brain stem is often formed, infants may be able to breathe or
respond to touch or sound. However, there is much debate as to whether this is a simply
reaction to stimuli and involuntarily caused by the brain stem. The infant can be blind, deaf,
have few if any reflexes and are unable to feel pain. The infant’s facial features will be
complete but the remaining brain tissue is often exposed i.e. not covered by bone or skin;
the opening in the skull will vary in size from infant to infant.
Hydrocephalus comes from two Greek words
The term Hydrocephalus comes from the two Greek words: 'hydro' which means water, and
'cephalus' which means head. In years past, it was commonly called 'water on the brain'. Put
simply it is a condition where there is too much cerebrospinal fluid in the cranium.
Cerebrospinal fluid (CSF) is found within the brain and the spinal cord. It is a clear, watery
substance that flows through a channel into the space (subarachnoid space) around the
brain and spinal cord, where it also functions as a cushion. The CSF is absorbed back into the
bloodstream via mushroom-like structures over the brain called and replenished. A small
amount of CSF is produced by the spinal cord. The CSF contains nutrients and proteins
necessary for the nourishment and function of the brain and carries waste products
awayfrom tissues in and around the brain.
The fluid is produced within hollow channels in the brain called ventricles, primarily within
the lateral ventricle. In each ventricle is a specialised structure (which looks like small
flower-like tufts) called the choroid plexus, which is responsible for the majority of CSF
production. This CSF is produced at a constant rate.
The brain maintains a balance between the amount
of cerebrospinal fluid that is absorbed and the amount that is produced.
Hydrocephalus occurs when there is an imbalance between the amount of CSF that is
produced and the rate at which it is absorbed. This can be caused by a blockage in the
pathways through which the fluid travels or from an overproduction of fluid or a difficulty in
absorbing the fluid that is produced. Because the brain is enclosed within the skull, the extra
fluid has no escape which causes it to build up. This then causes the ventricles to enlarge
and the pressure inside the head to increase, resulting in an enlarged head and increased
pressure symptoms.
SPINA BIFIDA & FOLIC ACID
Folic Acid & the prevention of NTD's
Spina Bifida is the most common neural tube defect (NTD) which causes incomplete
development of the spinal cord. The exact cause of Spina Bifida is unknown; however the
causes of Spina Bifida are thought to be a combination of environmental and genetic factors
and a lack of folate in the diet - or the inability to naturally absorb folate. Research to
determine the causes of NTDs is still ongoing. What is evident though is that taking Folic
Acid cannot prevent all occurrences of Spina Bifida but it can help to reduce the risk by up to
75%
Not Planning Yet?
In Ireland 50% of all pregnancies are unplanned each year. Spina Bifida Hydrocephalus
Ireland would recommend that any women of child bearing age take Folic Acid as part of
their regular diet. Taking 400 micrograms / 0.4 mg of folic acid can reduce the risk of Neural
Tube Defects (NTDs) such as Spina Bifida.
It's a Small Effort
Folic acid is a B vitamin that can be found in some foods. It can be difficult to get your
recommended daily allowance (RDA) of folic acid from food alone. The most practical way
to make sure you are getting enough folic acid in your diet is to take a folic acid supplement.
If you take a multivitamin, check that it has the RDA of folic acid - 400 micrograms.
What is the risk of having a baby with Spina Bifida?
Women who may become pregnant but who have not been identified as being in a high-risk
group should also take folic acid. Folic acid should be taken for at least one month before
conception and then until the end of the 12th week of pregnancy.
If a couple have already had a child with Spina Bifida (or have had a pregnancy affected by
Spina Bifida) the risk of it happening in another pregnancy is about 1 in 35. For the general
population the risk varies from 1 in 300 to 1 in 1,000.
Can Spina Bifida be prevented?
Evidence shows that taking Folic Acid cannot prevent all occurrences of Spina Bifida but it
can help to reduce the risk by up to 75%.
Research has shown that women who have had a pregnancy affected by a neural tube
defect can greatly reduce their chances of it happening again, simply by taking a daily
vitamin supplement (tablet) of folic acid, before pregnancy and for the first 12 weeks of
pregnancy.
What does this mean in practice?
Women at higher risk of having a baby with an NTD should take a daily 5mg tablet of folic
acid for at least one month before conception and then throughout the first 12 weeks of
pregnancy. These 5mg tablets have to be obtained on prescription from a GP.
Women considered to be at higher risk of having a neural tube defect pregnancy include
those who:
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have had a previously affected pregnancy
have an NTD themselves (or their partner has an NTD)
have a family history of NTD or whose partner has a family history of NTD.
have diabetes mellitus
are very overweight
have the "significant" form of Spina Bifida Occulta (see 'What is Spina Bifida Occulta?')
Women in families where there has been Spina Bifida or another NTD in other relatives may wish to
receive genetic counselling. In these cases, they should ask their doctor to refer them to a genetic
counsellor.
A healthy diet can help
Women who are planning to become pregnant should also make sure that their diet
includes foods which contain folate (this is folic acid in its natural form found in food).
Foods in which folate naturally occurs include baked beans, chick peas, green leafy
vegetables, lentils, orange juice, oranges, peas, rice, soya beans, split peas and sprouts.
Vegetables should be lightly cooked or steamed as over-boiling destroys their vitamin
content.
Although it contains folate, liver should not be eaten: liver contains high levels of vitamin A,
which could harm the unborn baby. Additional vitamin A supplements (tablets) should not
be taken.
Some substances may affect the absorption of folic acid so women taking any medication
should check this out with their doctor. Those with epilepsy and on anti-convulsant
medication should consult their neurologist before taking folic acid, as folic acid and some
anti-convulsants can be antagonists (i.e. work against each other).
Issues at present for SBHI members:
1. Lack of Paediatric Urology services in Temple Street Hospital
Due to the number of babies born on average each year with an NTD since 2009,
there are approximately 300 babies and young children attending Temple Street
Hospital who have not been reviewed by a Paediatric Urologist.
2. Research Post - Funding sought through Dept of Health in 2012
SBHI applied for a Nursing Post for a 12 month period to facilitate the
standardisation of care and promote a gold standard of care to their members
attending Temple Street Hospital. This would involve developing best practice
guidelines, clinical pathways and protocols for all health care professionals involved
in patient care. In addition the post holder will engage in research re: folic acid and
prevention of this condition as well as collecting and collating information which will
further improve patient outcomes. The post holder will work with SBHI and the Spina
Bifida Multi-disciplinary team in Children’s University Hospital, Temple Street, to
identify the needs of a child with spina bifida and develop resources to enhance
current service provision.
3. Transitioning from Paediatric to adult hospital services
This can prove to be an extremely difficult process for our members, who are
transferring from a more structured paediatric service over to a fragmented adult
service. This will mean that they need to attend various different consultants and in
many cases numerous hospitals to have their monitoring and follow-up carried out.
4. Additional FSW’s needed (Donegal & Cork / Kerry)