The charity’s call for action follows concerns that disabled children will be at risk after the Health and Social Care Bill, which outlines ways to modernise the NHS, failed to mention disabled children or even the child health system.
The Bill, which was introduced into Parliament in January, will go in front of the House of Lords Committee today (Tuesday).
The Every Disabled Child Matters report, which highlights problems with the existing system, calls for urgent action from the Department of Health to set out a clear vision for the way in which the reformed NHS will meet the needs of disabled children and children with complex health needs.
It says that confusion over how the new system will meet disabled children’s needs is having a negative impact among parents and the current reform represents a new opportunity to address health system failures for disabled children.
The report, Disabled Children and Health Reform: Question, Challenges and Opportunities, which is based on a series of interviews with families with disabled children and health professionals across the country, also highlights the problems parents of disabled children face with the current health system.
The main challenges reported by parents include: delays in receiving equipment, restrictions on vital support, such as nappies for children with continence issues, disputes over who funds services, and poorly co-ordinated appointments, poor communication across the system and lack of knowledge.
- In light of this, the report makes a number of recommendations to the Government including: establishing a ‘clinical network’ for children, with a defined responsibility for developing care pathways for disabled children and young people;
- giving careful consideration to the impact of current reforms on the commissioning of specialist health services for children and young people with high-cost, low-incidence conditions;
- providing information and support to disabled children and their families to ensure they understand the way in which the changing health system will affect them.