Throughout August we’re focusing on the support available to families looking after a seriously ill child in Scotland, Northern Ireland and Wales. We’ve published three blogs celebrating the great work being done in these areas, and raising awareness of the help available for families affected by a life-limiting condition who may require support. Our posts focusing on Scottish and Welsh services are also live on the blog.
This time we’re shining the spotlight on services and resources available to families living in Northern Ireland. Support services and staff work across the country to ensure that children and young people receiving palliative care can access the specialist facilities and professional support they require to thrive.
Northern Ireland Children’s Hospice
Northern Ireland Children’s Hospice supports seriously ill children and their families by providing a range of services, from hospice care at home, to respite breaks and end of life care.
Our mission is to inspire and deliver excellent and compassionate specialist palliative care via effective service models underpinned by exemplary education, innovation and research.
Northern Ireland Children's Hospice, Mission statement
Care in the hospice – Horizon House
Northern Ireland Children’s Hospice offers a wide range of hospice care to Northern Irish families, with a focus on enabling families to take a break from care responsibilities. Horizon House is a supportive facility offering high-quality specialist care and a range of therapeutic services. Families can benefit from the hydrotherapy pool, or relax in the family lounge.
For families who struggle to spend quality time together, the hospice offers the opportunity to enjoy short breaks in their on-site accommodation. Families can check in for a break together, safe in the knowledge that their child’s medical needs are in the hands of highly skilled healthcare professionals.
The hospice also enables short stays for life-limited children without their parents, enabling mum and dad to spend quality time with healthy siblings, or recharging on their own.
Care at home
The Community Team working for Northern Ireland Children’s Hospice works to ensure that families can receive care where they are most comfortable, often in their own home. This extends to end of life care, which can be supported from home with the help of specialist staff.
Supporting families through bereavement is also a vital part of the Northern Ireland Hospice Services. Counselling sessions offered as both group and individual activities, are an important part of the palliative care journey and are often seen as invaluable by affected families.
Teenage Weekends
Northern Ireland Children’s Hospice gives young people with complex needs the opportunity to spend time together & escape their parents at ‘Teenage Weekends’. Teens are taken on day trips and meet with special guests to make memories together and give them a chance to chat to others in their situation, away from the hospice.
Supporting Dads Program
Northern Ireland Children’s Hospice also looks after the emotional needs of those going through the palliative care journey, recognising that everyone’s experiences and responses are different.
The hospice recognises that fathers may find it difficult to find an appropriate outlet for their anxieties and grief, so the supporting dad’s program focuses on facilitating those conversations and providing support to Dads whatever stage of the palliative care journey they are at.
Sibling Support
Alongside the support available to parents, Northern Ireland Children’s Hospice also works to provide siblings with the support they need. Growing up with a seriously ill brother or sister can have a big impact on the amount of time siblings spend with parents, and the sense of responsibility they feel for their brother or sister.
At sibling support, healthy brothers and sisters are given the opportunity to talk through their feelings with a trained sibling worker. They also have the chance to spend time with children and young people in the same position as them, providing them with a network of children who have had similar experiences. This service is incredibly important, as it works to reduce the isolation felt by many siblings whose experiences can make them feel very different to their peers.
Contact
Contact is a national charity that allows parents and carers of children with disabilities to connect with others in similar situations at parent support groups.
They provide information for joining both local groups that bring together nearby families in the same situation, as well as national support groups that are more specific to the issues the family is facing, focusing largely on distributing sound medical advice and building social connections.
There is also the opportunity to contact another family personally, which can help to combat the loneliness experienced by families looking after a seriously ill child.
We support families with the best possible guidance and information. We bring families together to support each other. And we help families to campaign, volunteer and fundraise to improve life for themselves and others.
Contact
SEND support
Caring for a child with special educational needs can be challenging. Ensuring they get the right support to thrive can feel like a full-time job and navigating the landscape of educational healthcare plans can feel like a labyrinth.
The SEND support section of the NI Direct website is split into easy-to-read sections guiding parents through SEND schooling, from asking for extra help, to resolving disagreements with your child’s school.
The Palliative Hub, Children and Young People
This online resource aims guides parents and carers through the stages that make up the children’s palliative care journey, providing useful resources and condition-specific help to ensure the best care is available and accessible to families affected by life-limiting conditions.
Useful links
Parenting Helpline The Parenting NI helpline team all have knowledge of local services that are available regionally to ensure that all families with any additional needs can access other support if required.
Family Support Northern Ireland – a directory that allows you to search for the services you require where and when you need them.
Northern Ireland Direct provides advice on a wide range of issues from housing issues and child benefits, to extra support for children with disabilities
Direct payments for children with disabilities: Direct payments, which allow you to arrange care and services yourself instead of receiving them directly from your local trust, can be made to parents and carers aged 16 or over. This includes people with parental responsibility for a child with disabilities.
Family Fund: grants are available for families affected by life-shortening conditions.
Palliative and End of Life Care Toolkit with a useful section for patients and carers.