Tayside Child Health Rights Project
This project finished in December, 2012.
The Tayside Child Health Rights Project promoted the healthcare rights of sick children and young people as well as raising awareness of the needs of young and vulnerable parents and their babies in Tayside. Some issues affecting this group of young parents include isolation and their lack of knowledge about how to access healthcare for themselves and their babies at times of illness.
Since the project started in November 2007, the Project Officer looked into what services and resources exist in Tayside for teenage mothers and their babies. She built up a network of contacts including healthcare and community education professionals, community and voluntary organisations and helped to highlight the needs of young mums and their babies across all sectors.
The DVD – 'Child Health Rights What do you Know? Young Parents Speak Out' was launched in February 2010 and features young parents from across Tayside with the voiceover kindly provided by TV Presenter, Lorraine Kelly. The 15 minute film is an excellent example of peer education as the young parents speak of their experiences of engagement with healthcare professionals and of caring for their children and topics such as breast-feeding and attendance at ante-natal classes are mentioned. There is also input from a local Health Visitor and Midwife. Advice is also given about who to call in the event of your baby becoming unwell.
The DVD is supported by a booklet 'Help in Tayside for You and your Baby' which gives some general advice about where to get local support for a range of problems and issues as well as groups which young parents might might like to join.
The DVD and booklet are both available through the national office or from the local Project Officer. The DVD can be viewed on this website (with or without subtitles).
The project also promoted the healthcare rights of the sick child through the Tayside NHS Paediatric Leaflet Group, helping to ensure that leaflets for child patients and their families were written in user friendly language. The Project Officer also contributed to the Engagement and Involvement of Young People with NHS Tayside Community Health Partnership Sub group, which hoped to ensure that young people have a voice within the strategic planning of NHS Tayside.
How we Helped
Louise* was referred to our project officer by healthcare staff at a specialist centre. The information provided was that she simply needed support as her son, Steven,* had a rare heart condition that required a considerable degree of supervision and monitoring. In addition to her son’s health problems, Louise was pregnant and experiencing difficulties with the added concern that the baby could be affected with the same problems as her older son.
Louise already had an impressive knowledge of her son’s condition, particularly with regard to the effect of different foods on the dosage of his medication. She understood the importance of ensuring a healthy diet and consistent monitoring at home as well as at school where she worked hard to raise awareness with staff of the problems and complications associated with his condition. Steven’s condition meant that he often had to attend hospital as often as three times a week. This meant that he missed a considerable amount of school as attending and travelling to and from the hospital appointments was extremely time consuming. Louise remained very concerned about the time off school and about the unknown problems the new baby might face.
The specialist nature of Steven’s problems meant that Action for Sick Children Scotland was limited in practical terms, to giving information, support and advice and signposting to other relevant organisations and charities. As time went on, it became apparent that various bodies, both charitable and statutory, who had been involved with the family, faded away having established that there was little of a practical nature they were able to do. This left Louise feeling vulnerable and reluctant to trust anyone. However, our project officer was able to keep in touch and give support in other ways, and gradually built up trust.
The baby was subsequently born healthy and strong and Steven’s condition has stabilised (although this remains precarious). Other practical support included signposting her to a bed for her home through community contacts where the only cost incurred was for delivery. While not specifically a health-related matter, it provided much needed sleep for the mother and her child and contributed to her overall health and wellbeing.
At times it was felt that ASCS was limited in its scope and remit and because of this it was not always easy to assess the impact ASCS was having upon the situation until Louise sent a letter to our office expressing her thanks:
*Names have been changed to protect identities.
Fiona always keeps in contact to make sure we are okay especially my son as he has heart problems. She’s always trying to find ways of making my life easier but I don’t make it easy for her. She never gives up on me.