PAMIS, promoting a more inclusive society, is the only charity that solely supports children, young people and adults with profound and multiple learning disabilities (PMLD) and their families to lead healthy, valued and included lives.
PAMIS is funded to provide a lifeline family support service in a number of areas across Scotland but not in all regions. A family carer of a person with a profound learning and multiple complex disabilities has a particularly demanding and complex role which often involves lifelong caring. It can be a highly stressful and lonely. A number of the family carers end up as single parents due to the strain placed on family relationships and life. They find themselves having to fight for services and the human rights of their son or daughter. Having a family day out is also an epic task especially when you have to plan your destinations around an appropriate toilet with a changing bench and a tracking hoist. However despite these challenges, when supported, many family carers are resilient, optimistic and creative. In the funded areas PAMIS provides opportunities for families to come together in accessible environments with activities that the whole family can engage with. We notice that when families meet together they problem solve, share experiences and provide invaluable support and hope for each other.
Our challenge is how do we replicate this across Scotland (and wider) for this specific group of family carers? When there is no money to fund services and support how do we ensure that no family carer is left to feel isolated, inadequate and stressed in their role?