Contents
Executive summary ................................................................................................................................. 2
Organisation Background ....................................................................................................................... 3
Sickle Cell and Thalassaemia Facts. ....................................................................................................... 3
What is Sickle Cell Trait? ....................................................................................................................... 3
Thalassaemia ........................................................................................................................................... 4
SCTI Governance Body .......................................................................................................................... 5
Patrons ................................................................................................................................................ 5
Board of Directors............................................................................................................................... 5
Medical Advisers ................................................................................................................................ 5
Co-opted Board Members ................................................................. Error! Bookmark not defined.
Strategic Plan 2014-2016 For Sickle cell and Thalassaemia Ireland ...................................................... 6
About SCTI ............................................................................................................................................. 6
Vision: ................................................................................................................................................. 6
Mission: .............................................................................................................................................. 6
Values ................................................................................................................................................. 6
Objectives ........................................................................................................................................... 7
Who do we serve? ............................................................................................................................... 7
Affiliation and Partnerships ................................................................................................................ 8
Strengths, Weaknesses, Threats & Opportunities ................................................................................. 13
Strategic Action Programs. ................................................................................................................... 14
Key Strategies ................................................................................................................................... 14
Finance/Resources ............................................................................................................................ 15
Major Goals ...................................................................................................................................... 15
Strategic Action Programs .................................................................................................................... 16
SCTI Commitments: ............................................................................................................................. 16
Acknowledgements ............................................................................................................................... 16
www.sicklecellireland.ie/info@sicklecellireland.ie
1
Executive summary
We welcome all our guests, Minister, Ambassadors, friends, and colleagues in public health,
representatives of professional associations and community organisations, patients, volunteers, Ladies
& Gentlemen.
The Strategic Action Plan 2014 – 2016 is a landmark achievement in many ways for Sickle Cell and
Thalassaemia Ireland. It aims to focus attention on a public health problem with a sense of need and
urgency. It signifies that SCD and Thalassaemia deserve a higher strategic priority and public health
policy change, and it is a signal with an articulate and unified voice behind it. Internal and external
stake holders, medical professionals, parents and those living with SCD and Thalassaemia need
effective services and are initiating here a national awareness programme.
‘”Awareness Matters”. “Knowledge is Power”
Sickle cell disease is an international health problem and truly a global challenge. By Greg Baxter,
Irish Medical Times on September 11, 2009, “We won’t have the tribunal now. We’ll have it in 15
or 20 years’ time” according to Dr. Corrina McMahon who runs Crumlin’s Sickle-Cell Disease
(SCD) Centre, “it would be a real shame where we to see preventable deaths at a young age, when
other countries have their SCD populations living to 60 and 70”.
There are currently over 400 children with SCD in Ireland (2009 figures) and the number is
presumably rising. These children are being treated at Our Lady’s Children’s Hospital in Crumlin by
Consultant Haematologist Dr. McMahon. There are about 15 cases of Thalassaemia and the figures
for both are expected to rise in the next 10-15 years.
SCD – a disease of red blood cells – is a condition relatively new to the Irish population. For many
patients, it is a bad disease and can be truly terrible. It can lead to death at a young age. The number
of sufferers and carriers is bound to grow considerably if proper awareness programmes and
prevention measures at not put in place. A national genetic screening programme for new-born
babies, expectant mothers and couples considering starting a family is vital to the reduction and
management of SCD and Thalassaemia patients.
There is no designated service for adults with SCD and neither is there structured funding for children
with the disease. “If we don’t get our act together, we’ll have adults dying at age 40 or 45” said Dr.
McMahon. SCTI aims to fight the prevalence of growth of Sickle Cell disease and Thalassemia in
Ireland. Our ultimate goal is to advance health in our local community through raising awareness
and gathering support.
Lora Ruth Wogu
Chief Executive/Founder SCTI
www.sicklecellireland.ie/info@sicklecellireland.ie
2
Organisation Background
Sickle Cell and Thalassaemia Ireland (SCTI) charity number CHY20908 is the first organisation set
up and run by Sickle Cell and Thalassaemia families, carriers and volunteers to raise awareness of and
support for Sickle Cell and Thalassaemia in Ireland through educational workshops, seminars, media,
printed information, genetic screening and encourage public policy change.
The roots of our organisation are two parents who were close friends and experienced similar
difficulties to each other in the early years of their children’s lives (year 2001). One of these parents
was me, Lora Ruth Wogu, and I have a child with limited abilities (special needs) and sickle cell trait
and the other parent’s child has Sickle Cell Disease.
The sleepless nights beside their children’s beds, helpless and anxious were made more difficult as we
had little understanding of how the medical system worked here. My stepbrother died at the age of
31 in 2007 and I only found out it was due to complications of Sickle Cell disease after visiting home
in Africa in 2011. This, and our children, led me to try to help people with this disease. Never
knowing the constant pain one goes through (as this is never spoken of in many families) is part of the
daily struggle of life for people living with Sickle Cell Disease and Thalassaemia. I take comfort in
hoping that we can make a difference and provide support to the families going through it.
Understanding the inheritance pattern and lifetime suffering of patients with Sickle Cell and
Thalassaemia will help the target groups in making informed future decisions and in turn will help to
fight the growth of Sickle Cell and Thalassaemia cases in Ireland. This will be assisted by genetic
testing. Making testing available is one of our aims.
Sickle Cell and Thalassaemia Facts.
When sickle-shaped cells block small blood vessels, less blood can reach that part of the body. Tissue
that does not receive a normal blood flow causes pain and becomes damaged. This causes the
complications of sickle cell disease. There is currently no cure for sickle cell disease.
What is Sickle Cell Trait?
Sickle cell trait (AS) is an inherited condition in which both normal and abnormal haemoglobins (A &
S) are present in the red blood cells. Sickle cell trait is not a disease but if both parents carry the trait,
their child may have the disease.
Sickle cell conditions are inherited from parents in much the same way as blood type, hair colour and
texture, eye colour and other physical traits. The types of haemoglobin a person makes in the red
blood cells depend upon what haemoglobin genes the person inherited from his or her parents. Like
most genes, haemoglobin genes are inherited in two sets, one from each parent.
www.sicklecellireland.ie/info@sicklecellireland.ie
3
Thalassaemia
Thalassaemia is also an inherited red cell blood disorder, which causes chronic anaemia. It affects
many people from the Mediterranean and Asian Origin, the Far East and can be found in some parts
of Africa.
These diseases are common and awareness of their existence in Ireland is very low.
www.sicklecellireland.ie/info@sicklecellireland.ie
4
SCTI Governance Body
Patrons
Deputy Robert Dowds TD.
Dr Donald McCarthy (Consultant haematologist St Vincent’s University hospital)
Board of Directors
Ms Lora Ruth Wogu (CEO/Founder)
Ms Marisa Maciala (Co- founder)
Ms Irene Mutesi (co-founder)
Ms Brigitte Echiedju
Ms Ijeoma Nwabuezi
Ms Siyan Apesin
Mr John Lawal
Ms Harriet Katete
Ms Aderonke Omagbemi
Ms Busayo Ajani
Ms Kofo Davies Otto
Ms Claudia Horoaeu
Mr Alex Sekandi
Medical Advisers
Dr Corrina McMahon (Consultant Haematologist, Our Lady’s Children Hospital Crumlin)
Dr Ikechukwu Okafor (Consultant. Paediatrician, Temple Street Children’s Hospital)
Dr Jasbir Singh Puri (Consultant General Medicine, Our Lady of Lourdes Drogheda)
Dr William Murphy (Irish Blood Transfusion Service, St James Hosptal)
www.sicklecellireland.ie/info@sicklecellireland.ie
5
Strategic Plan for Sickle cell and Thalassemia Ireland 2014-2016
©Prepared by
SCTI Committee with the support of Mr Anthony Carrick at DFI.
Launched on Tuesday, 09 February 2016
This strategic planning document articulates our vision, goals, strategies and indicators of
achievement. It reflects our values – a commitment to excellence in organisation leadership, strategic
thinking, quality, compassion, justice, equity, diversity, innovation and a sense of urgency. It reviews
strengths, weaknesses, threats and opportunities; presents a series of fundamental statements relating
to SCTI vision, mission, values and objectives; and sets out SCTI proposed strategies, goals and
action programs.
About SCTI
Sickle Cell & Thalassemia Ireland CHY 20908.
SCTI is a charitable Organization set up and run by Sickle Cell and Thalassemia families, patients and
volunteers to raise awareness and support for Sickle Cell and Thalassemia in Ireland, through
educational workshops, seminars, media, printed information, promoting genetic screening, research
and support for each other.
SCTI is bound and governed by its Memorandum and Articles of Association as its governing
document.
The Organisation currently has more than 50 active members including adults with Sickle Cell
disease, parents of children with SCD, and those with the Sickle Cell trait.
Vision:
To implement proper awareness programmes that will promote better understanding of Sickle Cell
and Thalassemia. We aim to improve quality treatment, patient support and to facilitate research.
Mission:
We aim to fight the growth of SCD and Thalassemia in Ireland by creating a proper support network
between the patients, the community and the health professionals.
Values
SCTI operates in accordance with the highest standards in all relationships with service users and the
community. Our values are:
www.sicklecellireland.ie/info@sicklecellireland.ie
6
1. Behaving with integrity:
Being honest, fair and independent. Making sure the Chair leads the Board in developing an
ethical culture in line with the values of the organisation. Being fair by consistently applying
the same ethical standards to every person and situation.
2. Being transparent and accountable:
Encouraging and enabling the engagement of those who benefit from the organisation to help
plan and make decisions for the organisation.
3. Working effectively:
Making sure Directors understand that they have a duty to act independently in promoting the
aims of the organisation in line with its governing document. While board members may be
nominated by a particular group, they must not act as a representative of that group in acting
as a board member. Board members must at all times respect board confidentiality.
4. Social inclusion and integration: Facilitating participation in employment and access by all
to resources, rights, and services. This relates to access to employment and the need for
adequate social protection “to live life with dignity” and to meet basic needs such as income,
housing, healthcare and education. To eradicate stigmatisation and promote community
integration. This will prevent the risks of exclusion.
5. Compassion and empathy: As people affected either personally or in our families, we have
great motivation to help improve the lives of others who are similarly affected.
Objectives
Longer term objectives of SCTI are summarized as:
1. To educate the target groups from different nationalities especially from Africa, India and
Asia and the general public about the prevalence of Sickle Cell and Thalassemia in Ireland
through information sessions, activities, materials, group discussions.
2. Encourage target groups to avail of genetic screening in order to decrease the prevalence of
SCD and Thalassemia in Ireland. Sickle Cell and Thalassemia screening before considering
marriage or starting a family will be of utmost importance in preventing the growth of Sickle
Cell and Thalassemia cases in Ireland, and will enable both partners to make informed
decisions.
3. Encourage adequate support for research activities leading to improved treatment and
eventual cure.
4. Organize and/or participate in national and regional educational conferences to promote
awareness of SCD and Thalassaemia.
5. Develop and promote the implementation of service programs that will be in the best interest
of people living with SCD and Thalassemia, the families and carers
Who we serve?
www.sicklecellireland.ie/info@sicklecellireland.ie
7
•
Individuals living with Sickle Cell Disease and Thalassemia
•
Family members (immediate and extended) and friends of individuals living with Sickle Cell
Disease and Thalassemia.
•
The health care providers – both medical and allied health professionals.
•
The community representatives- day care workers, teachers, employers and others.
Affiliation and Partnerships
SCTI works in partnership with other health agencies, medical professionals and other primary stake
holders in attaining a positive outcome.
We work with major national organisations such as the Genetic and Rare Disorders Organisation
(GRDO), The Irish Platform for Patients' Organisations, Science and Industry (IPPOSI) and the
Disability Federation of Ireland(DFI), The Wheel, Cairde, as well as with international bodies such as
Global Sickle Cell Disease Network (GSCDN), The UK Thalassemia Society, Sickle Cell Society
UK, Thalassaemia International Federation (TIF) and National Human Genome Research Institute
(NHGRI) to advance the interest of people with hemoglobinopathies.
Officially registered as a company limited by guarantee in August 2012, SCTI, (formerly known as
Ireland Sickle Cell awareness) has as its goal to educate the public and target groups about Sickle Cell
disease. With the support of its Patron, Deputy Robert Dowds TD, we held our first and official
education and family support event on the 15th December 2012, acquiring the motto: Advocacy,
Awareness, Support & Care (AASC), letters which reflect the names of the abnormal haemoglobins in
these diseases.
Some of our work include:
1.
2.
Family support gatherings 2012.
“Be Aware, Know your gene Type” the importance of genetic screening April 2013, this
event saw a rise in a number of genetic screens performed as a result of the educational
campaign.
www.sicklecellireland.ie/info@sicklecellireland.ie
8
3.
4.
Sickle Cell awareness at the Africa day celebrations May 2013 where 1,634 informational
leaflets were handed to the public. This increased traffic on our website.
Flora women’s mini marathon June 2013. We were pleased to be represented at such a
widely acclaimed event.
5. Awareness raising at radio stations included: News talk 103.0fm, South Dublin FM 98.3,
www.sicklecellireland.ie/info@sicklecellireland.ie
9
6. World Sickle Cell day celebrations as the team embarked on community awareness and
leafleting in major areas of Dublin 19th June 2013,
7. September 2013, Sickle Cell awareness month, a joint effort with our international supporters,
the team engaged other target groups and nationalities such as the Indian community in the
awareness campaign. 2,688 informational leaflets went to the community centres and
medical/GP centres in major areas in Dublin.
8. Sickle Cell public Education event October 2013.
9. Awareness at the Dundalk online advertising network Launch February 2014.
SCTI has visited over 42 communities and immigrant led organisations, schools, and community
centres, GP services, hospitals and has supplied information materials to other organisations around
the country such as Airc Mayo, Special needs parents association, St Finians Secondary School,
Divine Mercy Junior National School and many more.
More Recently SCTI has finalised drafting and started an educational project on Sickle Cell and
Thalassaemia.
Outreach Project: Promoting community education of sickle cell and Thalassaemia awareness in
accommodation centres, churches, schools and colleges in all counties in the Republic of Ireland. The
project timeline is: 05/03/2014-27/03/2018. (Details of this project can be found in the project copy
www.sicklecellireland.ie/info@sicklecellireland.ie
10
and at our website: www.sicklecellireland.ie.
www.sicklecellireland.ie/info@sicklecellireland.ie
11
www.sicklecellireland.ie/info@sicklecellireland.ie
12
Strengths, Weaknesses, Threats & Opportunities
This strategic plan addresses the following key strengths, weaknesses, threats and opportunities which
apply to SCTI now and in the foreseeable future:







Strengths:
Basis for strong management team
Working with key local and
international stake holders.
Very focused management and
Volunteers
Initial project can translate to more
projects
SCTI encourages and enables the
engagement of those who benefit from
the organisation in the planning and
decision-making of the organisation.
SCTI maintains and behaves with
integrity.
Being the first parent and patient led
organisation, provides SCTI with a
basis for a national representation of
Sickle Cell and Thalassaemia in
Ireland.
Weaknesses:




Insufficient funds/ resources
Lack of statistics and data base of the
number of those living with SCD,
Thalassaemia and carriers(gene traits)
Inability to employ full time
professional Research, Management &
qualified staff due to inadequate
funding
Inability to expand project goals due to
limited resources
www.sicklecellireland.ie/info@sicklecellireland.ie
13




Threats:
The growing number of target groups
migrating to Ireland means more
vigorous awareness campaigns needed
thus the need for more resources.
Language barriers within different
target groups.
An environment of constant sudden
change both in the external and internal
circumstances of the Organisation, and
service users.
Limited knowledge and interest about
Sickle cell disease among the
professionals
Opportunities:
Promoting the need for a national
screening programme for SCD ant
Thalassaemia in Ireland.
 To work in partnership with
international organisations in
promoting the awareness of the
genetic conditions at a global
scale.
 Community board service,
presentations to community
organisations.
 Impact on health-care public
policy.




Identifying key stakeholders and
making sure there is a strategy in
place for communicating with
them appropriately.
Working effectively. Participate
as a valued member of the
community by enhancing the
quality of life and the economic
strength of our region and state
through Indicators of
achievement, surveys of
community perception of
organizational contribution.
Community board service,
presentations to community
organisations which will Impact
on health-care public policy.
Strategic Action Programs.
Key Strategies
The following critical strategies will be pursued by SCTI:
1.
2.
3.
4.
Engage with major stake holders in moving forward.
Raise adequate operating capital/resources
Work in partnership with other organisations and health agencies in achieving the objectives
Analysis of clinical care, training and research activity
www.sicklecellireland.ie/info@sicklecellireland.ie
14
The following important strategies will also be followed:
Strategy A. Train, support and expect staff to practice service excellence in all interactions with
patients and others, including co-workers.
Strategy B. Design and implement patient advocacy programmes that will help lead improvement in
service excellence as well as respond to their individual concerns.
Finance/Resources
Strategy A. Implement a monitoring system based on management and financial reports that requires
accountability for variances.
Strategy B. Provide budget development and management training for leadership and directors to
build competence and accountability.
Strategy C.
Establish user friendly management reports and consultation to those responsible for budgets.
Major Goals
The following key targets will be achieved by SCTI over the next 3-5 years:












Awareness educational programmes in schools, colleges, community and immigrant centre
Educational workshops involving medical professionals and frontline staff
Support group discussions and peer mentoring
Mobilizing people for screening, membership and outreaches
Be a primary source of information that provides valuable resources to patients and their
families.
Create public awareness of the need to fund scientific and clinical advances in Sickle Cell
Disease and Thalassaemia.
Ensure Sickle Cell Disease and Thalassaemia is visible to policy makers and relevant public
institutions.
Rally public support for the appropriate care of individuals with Sickle Cell Disease and
Thalassaemia.
Facilitate the development of a rich information sharing environment to support care
providers in and across Ireland.
Engage Educational Institutions, Medical Schools, CPD providers that specialize in clinical
training to include Sickle Cell Disease and Thalassaemia in their teaching curriculum.
Drive & Pursue the creation of a National Sickle Cell Disease and Thalassaemia Registry.
Provide robust services for people living with Sickle Cell and Thalassaemia as follows:
a.
Hospital visits, Home visits and advice
b.
Assist people who need carer’s assistance
c.
Temporary child care for parents in admission (especially single parents/guardians)
d.
Transportation Assistance where possible (sickle cell medical appointments)
e.
Mentor Program (through SCTI Support Group)
f.
Sickle Cell Genetic Counselling
www.sicklecellireland.ie/info@sicklecellireland.ie
15
g.
h.
i.
j.
k.
l.
m.
n.
Thalassaemia Genetic Counselling
Sickle Cell Disease Trait Testing (only at Hospitals and Government official centres)
Thalassaemia Trait Testing (only at Hospitals and Government official centres)
Supporting Parents/Guardians whose children are on admission
Provide help to minors to cope with education and daily activities
Provide help to adults about career and daily activities
Empower through SCTI Support Group
Referrals for other Social Services
Strategic Action Programs
The following strategic action programs will be implemented:
Growth:






Educational workshops involving medical professionals and frontline staff.
Support group discussions and peer mentoring.
Strategy A. Assume a visible interest and role in the community by SCTI leadership.
Strategy B. Reach out to community groups to provide support to their programs for
community wellness such as providing volunteers and information for health fairs or
collaborating in program development.
Strategy C. Develop planned outreach programmes to community settings, schools and
colleges, immigrant centres.
Strategy D. Be an active member of the community in emergency response for people living
with SCD and Thalassaemia.
Measurable Goals




Establish membership/involvement in community groups.
Participate in five community health fairs or events between 2014 -2016.
Educational workshops involving medical professionals and frontline staff.
Support group discussions and peer mentoring
SCTI Commitments:
Acknowledgements
Our sincere gratitude to Dr Corrina McMahon consultant haematologist Crumlin Children’s Hospital
for her continued support and care for the families afflicted with Sickle Cell and Thalassaemia,
dedication, guidance and advice throughout, Deputy Robert Dowds TD for his patronage, support and
www.sicklecellireland.ie/info@sicklecellireland.ie
16
encouragement and for believing in our efforts, Professor William Hall UCD and St Vincent’s
University Hospital microbiologist for his support, understanding and donations to the work of SCTI,
Dr Donald McCarthy Consultant haematologist St Vincent’s university hospital and patron of the
SCTI for his support, advice and encouragement and for all the care he has provided to our members.
Dr Ikechukwu Okafor consultant paediatrician Temple street hospital for his continuous medical
advice, support and community educational input throughout all our awareness campaigns.
Miss Mary Bell Education and Learning officer St James Hospital for encouragement, advice and
understanding the tough times.
Miss Diane Nurse HSE Social Inclusion unit for the support direction and efforts.
SCTI would not be where it is if not for the tremendous support since the start of the Organisation
from Mr. Anthony Carrick, Support Officer Disability Federation of Ireland.
Mr John Cotter for the set up and moral support, advice to the committee and for looking into all
required legislation for SCTI. We are ever more grateful.
We do not forget the support received from other immigrant organisations such as Akidwa. Many
thanks to Mrs Lorraine Dempsey from Special Needs Parents Association for her support and advice,
There is no success without the commitment, and dedication of the Board of Directors, committee
members, and the people living with SCD and Thalassaemia and to all who have contributed to our
work directly or indirectly.
We look forward to working with you all in the future.
Thank you all for your support.
Lora Ruth Wogu
Mr John Lawal
Mr Anthony Carrick
CEO/Founder
Executive Director
Support Officer
SCTI
SCTI
Disability Federation of Ireland
Dr Corrina McMahon and Dr Ike Okafor at the educational event on SCD & Thalassaemia 10th
October 2013.
www.sicklecellireland.ie/info@sicklecellireland.ie
17
Educational event for SCD &Thalassaemia 10th October 2013.
www.sicklecellireland.ie/info@sicklecellireland.ie
18
Some of our Committee members
The children of tomorrow.
www.sicklecellireland.ie/info@sicklecellireland.ie
19
www.sicklecellireland.ie/info@sicklecellireland.ie
20