CPG on Rare, Genetic, and Undiagnosed Conditions discuss supporting families
Haemophilia Scotland is a founder member of the Cross Party Group on Rare, Genetic, and Undiagnosed Conditions (CPG) in the Scottish Parliament. It gives us a chance to work with other patient group and supportive MSPs to give all rare conditions a louder voice. As individual conditions we all have small numbers but 1 in 17 people will experience a rare condition during their lifetime so together we can have more impact.
The meeting covered two important topics which will be interesting to families with inherited bleeding disorders.
Firstly, we heard about a Rare Diseases UK report “Understanding Children and Young People’s Experiences (2018).” It’s key findings are,
- Children affected by rare disease are adaptive, resilient and do not see their rare disease as a fundamental part of their identity.
- There are aspects of their care children think could be improved.
- The people that care for children, both at hospital and at home, play an important role in shaping children’s experience of living with a rare disease.
- Children’s needs and challenges change as they get older, meaning the experience of young people is often very different to that of children.
- Siblings understand a great deal about their brother or sister’s care and develop skills in empathy and compassion, despite facing challenges.
Both the findings and methodology of the report are very useful for us as we work to improve our children and families services and develop our teenagers project.
Secondly, the Scottish Government presented on the consultation they are conducting to develop a resource for Supporting Disabled Children, Young People and their Families.
They are working with individuals, families, and organisations to produce a rights based resource. At the consultation stage it is only available as a document but once it is agreed they plan to use the information to develop a website and app. They are hopping to make it much easier for families with disabled children and young people to find out what services and support they are entitled to and where they can go for additional support.
If you’ve ever felt like you don’t know what services you should be getting or where you can get more information then please take part in the consultation. They really are keen to make sure the resource isn’t just another Government policy document, they want to to be something that is practical and useful.