Who is this information for?

Anyone caring for a person aged 16 or over who cannot make some decisions for themselves, and who needs support from health or social care.

Being unable to make a particular decision for yourself is known as ‘lack of mental capacity’.

How we came about

Our website was developed following feedback from parents of young people who attended the Rainbows Hospice for Children and Young People, and faced real challenges around continued decision-making for their children once they reached adulthood.

As a result, monies from the NHS England Mental Capacity Act (MCA) Improvement Programme provided the funding to support a workshop for parents and carers of young people from across the East Midlands who had entered adulthood never having the capacity to make their own decisions.

The funding also helped to support the development of the website – a tool aimed to support parents so that they better understand their rights and options in decision-making as they continue to love and care for their adult child.

The website has been developed through collaboration with young people and parents and carers from across the East and West Midlands, NHS England, Leicester City CCG, East Leicestershire and Rutland CCG, West Leicestershire CCG, Browne-Jacobson Solicitors, Rainbows Hospice for Children and Young People, Together for Short Lives and Murray Hall Community Trust.