The Network of Childhood Illness Organisations is a forum for childhood illness groups to share ideas and to be a single, united voice for policy makers and services providers to communicate with.  With the current changes to paediatric care in Ireland and the development of the New Children’s Hospital and its satellite centres, it has never been more important for organisations with a common goal and who represent the interests of children and young people with experience of being in hospital to connect and share best practice.  Below you will find recent research papers from some Network members.

To Dear to Visit:  Academic Paper from Cliona’s Foundation

The report sets out three key recommendations:
1. Requirement to establish a national database on families caring
for children with a life-limiting condition.
2. Government to establish a new ‘looking after a child with life limiting illness’
grant for families with a child suffering from a life-limiting condition.
3. Cliona’s Foundation to tailor its support services to meet the unique needs of
the families including partnerships with services companies to provide a range
of assistance to the families.  Download report.

Childhood Illness : Financial Stress

Financial research survey conducted by Children in Hospital Ireland

This research was conducted between July and December 2019 and carried out using desk research, on-line surveys – consisting of both quantitative and qualitative analysis.  We also conducted interviews with parents, NGO professionals and social workers. Over 300 completed surveys were returned.  Download summary findings here

Full research findings will be published in 2020

Research Report – Living with a rare disease in Ireland during the Covid-19 pandemic.

The report, Living with a Rare Disease in Ireland during the COVID-19 Pandemic, has highlighted how COVID-19 is hindering access to routine treatment and care for people with rare diseases, and is having a detrimental effect on their health and well-being. The research provides a snapshot into life today for people with rare diseases, with responses from 176 people living with a rare condition, their family members and their carers, from across the island of Ireland. It was undertaken by Rare Diseases Ireland, the national alliance for rare disease voluntary groups, in the two-week period leading up to May 6. Download report here

Park the Charges: A campaign from the Irish Cancer Society

■ Patients undergoing cancer treatment should receive free or significantly reduced car
parking;
■ Patients should be informed of parking exemptions in their first appointment letter;
■ Concessions should be widely promoted and easy to understand and apply for;
■ Responsibility for informing cancer patients about their rights should rest with a specific
member of staff;
■ Healthcare professionals should be made aware of free parking schemes/concessions;
■ Any future tender arrangements for private car park operators should clearly place the
onus on operators to provide discs or tokens for cancer patients;
■ Charges should be displayed clearly and well publicised at car park entrances and wherever
payment is made, along with on the hospitals website;
■ Any concessions should also be clearly advertised;
■ Transparency in parking charges should be encouraged. Hospitals must publish car parking
costs, revenue raised from car parks, the use of that revenue and tenders/contracts with car
park operators publicly;
■ Weekly caps on charges should be introduced to protect regular patients and visitors

Download the report here