One in every 9 babies in the UK is born either premature or sick. That’s over 80,000 babies every year with one being admitted to special care every six minutes. The vital care that babies receive after birth can have a profound impact on the rest of their lives. For families struggling to cope, this will be one of the most difficult, emotional and stressful times of their lives. Bliss is the UK charity working to provide the best possible care and support for all premature and sick babies and their families.
Carers Trust is a new charity which was formed by the merger of The Princess Royal Trust for Carers and Crossroads Care in April 2012. Together with our Network Partners, we provide access to desperately-needed breaks, information and advice, education, training and employment opportunities. Our Network Partners benefit from the provision of grants, advice documents and reports to improve carers’ services. We give carers and young carers avenues to speak to someone and make their voices heard, offline via our carers’ services and young carers’ schemes and online via our interactive websites.
Centre for Independent Living NI
Centre for Independent Living NI, which was set up in 2001 as Centre for Independent Living- Belfast, is an organisation run by disabled people for disabled people. We work to promote the principles of independent living and, in particular, to provide a range of services for people using or considering using Direct Payments and/or Self-Directed Support.
Crossroads Caring for Carers
Crossroads Caring for Carers is a Northern Ireland based charity. Since 1984 Crossroads has provided respite care for carers, who provide care for an elderly, frail, ill or disabled friend or relative. Crossroads aim to meet the needs of carers by providing them with a much-needed break whilst providing peace of mind that their loved one is well taken care of by a Crossroads care attendant.
Health and Social Care (HSC)
The statutory provider of care and social services in Northern Ireland is the HSC. It delivers these services through six health care trusts. Five of these trusts are responsible for delivering health and social care services across Northern Ireland. The websites listed below will provide you with access to your local health care trust where information about services available will be found. The websites also offer a wealth of information on a number of topics that maybe relevant to your child and your family.
- Belfast Health and Social Care Trust
- Southern Health and Social Care Trust
- South Eastern Health and Social Care Trust
- Western Health and Social Care Trust
- Nothern Health and Social Care Trust
Disabled children have been at the heart of the charity since 1991. Since that time we have become, though our work, the specialists for special children. Their needs and the needs of their families and carers, their health and their voices are all central to the work of the charity.
Northern Ireland Children’s Hospice
Northern Ireland Children’s Hospice is the only service of its type in Northern Ireland that cares for children and young people with very complex needs. Our service is based on the values of the preciousness of life, respect and compassion, and holds close to our philosophy; “caring is at the heart of everything we do”.
The mission of the Children’s Hospice is to provide high quality care and support to children and young people with life-limiting conditions, and their parents and carers. Care is provided in the child’s own home and in the Children’s Hospices in Antrim and Fermanagh.
At Northern Ireland Children’s Hospice, we want to make it as easy as possible for local families to access the care and support they need. We tailor our service to the needs of the individual and aim to meet the emotional, social and spiritual needs, as well as the physical ones, to enable children and young people to make the most of their lives within the limitations of their illness.
Compassionate Communities NI
Compassionate Communities NI takes a public health approach to palliative and end of life care. Their aim is to improve death, dying and loss experiences for everyone in Northern Ireland by empowering people and communities to make positive choices about end of life through leadership, influence, capacity building and training. They promote the importance of social support and community involvement in achieving wellbeing up to and including end of life through kindness, compassion, active citizenship and social inclusion.
Brainwaves NI is a registered charity with a clear purpose. The Charity provides information and support to those affected by a brain tumour. This purpose shapes and directs all aspects of the work that we do.
Carers Northern Ireland
Carers Northern Ireland is a charity set up to support people who care for an elderly relative, a sick friend or a disabled family member. Carers Northern Ireland:
- supports carers and provides information and advice about caring
- influences policy through our research based on carers’ real life experiences
- campaigns to make life better for carers.
Long Term Conditions Alliance Northern Ireland
The Long Term Conditions Alliance Northern Ireland (LTCANI) is an umbrella body for voluntary and not for profit organisations working with and for people with long term conditions in Northern Ireland. Collectively LTCANI member organisations represent approximately 500,000 people with long term conditions in Northern Ireland.
the Carers Trust provide an online space for young carers to connect, share their experiences, and access trusted support.
The vision of the site is to bring together young adult carers from across the UK, as well as those who work with young adult carers, via an online space which is safe, fun, and most of all, inspiring. There is an online community team on hand to provide support as and when needed, by messaging or email.
TinyLife started out in 1988 as NIMBA (Northern Ireland Mother & Baby Appeal), the only premature and vulnerable baby charity in Northern Ireland.
The charity was established by healthcare professionals and concerned parents in the Belfast area in response to the growing number of babies requiring special or intensive care at birth.
Then in 2006 we thought it was time for a significant change and TinyLife was born. Our name may have changed, but the task at hand remains the same – to help reduce the number of premature and sick babies born in Northern Ireland and to support families who have experienced the birth of a premature, ill or disabled baby or babies.
Willow is the only UK charity supporting seriously ill 16 to 40 year olds by providing unique and positive Special Days. We are totally reliant on the generosity of individuals, companies, trusts and foundations to fund our work.
For some their Special Day is a final chance to realise a dream. For others it provides a positive focus away from diagnosis and treatment, boosting confidence and providing the motivation to move forward with their lives. But for all, Special Days are enriching experiences shared with loved ones. They are moments in time that create the memories that will be treasured forever.
Together for Short Lives
Together for Short Lives is the leading UK charity for all children with life-threatening and life-limiting conditions and all those who support, love and care for them. We support families, professionals and services, including children’s hospices.
Helpline and Advocacy Service
nidirect brings together lots of information from government departments and agencies, written in language that is easy to understand. And, you don’t need to know the workings of government to find what you are after. nidirect offers all the information parents need to know in terms of benefits and financial support available in Northern Ireland. They also carry a large amount of information relating to carer’s rights, services for children with a disability and links to useful organisations.
Northern Ireland Family Support Website
The Health and Social Care Board for Northern Ireland, has developed the Northern Ireland Family Support website. The purpose of this website is to create a comprehensive database of family support and childcare services across Northern Ireland. The site was developed in 2009 as a one of the recommendations of the DHSSPS’ Families Matter Strategy. ‘Transforming Your Care’, a review of health and social care in Northern Ireland also recognised the importance of the website as an information and signposting resource for families, communities and professionals.
Barnardo’s NI works for children first and last. In over 100 years they have helped improve the lives and opportunities of tens of thousands of children in communities across Northern Ireland. Barnardo’s run a special child bereavement service for children that have lost someone close to them. They also offer bereavement services to families and adults.
Children’s Bereavement Network
The Childhood Bereavement Network (CBN) is the hub for those working with bereaved children, young people and their families across the UK. We underpin our members’ work with essential support and representation: bringing them together across localities, disciplines and sectors to improve bereavement care for children.
Cruse Bereavement Care
Cruse Bereavement Care’s vision is that all bereaved people have somewhere to turn when someone dies. Our mission is to offer support, advice and information to children, young people and adults when someone dies, and to enhance society’s care of bereaved people.
Foyle Hospice – Children & Young Person’s Support Service (4-16 Years) – ‘Healing Hearts’
For the majority of children their loss is their first experience of death and consequently they are often not equipped to deal with the trauma and subsequent changes to their family and circumstances. Often children become overwhelmed by the intense emotions they are feeling and have difficulty expressing their feelings.
The group programme has been set up to deliver 6 sessions every 3 weeks and runs 2 programmes annually. Children and young people attend the group sessions with a parent or carer. Two trained professionals facilitate each session lasting approximately 2 hours. Children and young people participate in a variety of age-appropriate, FUN activities that may vary from arts and crafts to musical activities. Participation is voluntary.
Web: Healing Hearts
Hope Again is Cruse Bereavement Care’s website for young people. Cruse is a national charity that provides support, advice and information to children, young people and adults when someone close to them dies. We also work to enhance society’s care of bereaved people.
HSC Bereavement Network
HSC Bereavement Network website has been developed to provide information and guidance for those who care for and support dying people and their loved ones around the time of and after death. The site also provides information and signposting for bereaved people to relevant support organizations and sources of further information.
Website: HSC Bereavement Network
Still Birth and Neonatal Death Charity (Sands)
Sands is a national organisation, established in 1975. We work throughout England, Wales, Scotland and Northern Ireland. Around the UK, Sands has over 120 groups. These are all organised and run on a voluntary basis by bereaved parents, for bereaved parents. Sands in Northern Ireland has its own helpline number. There are currently eight groups. They offer befriending service that covers the whole or Northern Ireland.
The Compassionate Friends
TCF is a charitable organisation of bereaved parents, siblings and grandparents dedicated to the support and care of other bereaved parents, siblings, and grandparents who have suffered the death of a child/children.
They offer support both directly to bereaved families and indirectly by fostering understanding and good practice amongst professionals concerned with child death and by increasing public awareness.