On 26 February, Parkinson's UK supported a parliamentary event to highlight the social care needs of working-age people with long term conditions or disabilities.
The event comes at an important time when the government is considering changes to the social care system in England. A paper outlining government proposals for the future of social care has been promised this Spring.
The event was organised by 9 different All-Party Parliamentary Groups (including the APPG on Parkinson’s) and was attended by over 100 people.
Carers share their views
Barbara, a member of Parkinson's UK Policy Panel, told the meeting about her experience and why it is so important people get timely support:
"People with Parkinson's and their carers are often unaware of social care and how to access it until they are in a crisis situation.
"I spent months trying to get an assessment for myself and my husband, who has Parkinson's. Due to the lack of support, my husband had to go into a care home before an assessment took place."
She asked what more could be done to get people the support they need sooner, before reaching crisis point.
Hazel, who also cares for her husband with Parkinson's, suggested that an emergency care service is needed. She highlighted that many people get short windows of care support at fixed times, but these don't always match up with people’s needs.
She said that as a result many people who have non-medical but critical care needs are calling A&E. She suggested an emergency care service that assists when people need it could help people live safely in their own homes for longer, as well as relieving pressure on A&E.
Shared experiences and next steps
The event also heard from people with a range of conditions and disabilities including motor neurone disease, autism, visual impairment and Multiple Sclerosis.
As well as a cross-party panel of MPs and peers, the audience included many MPs and peers including Co-Chair of the All-Party Parliamentary Group for Parkinson's, Baroness Gale.
Points raised during the event will be collated into a report that will be sent to the Secretary of State for Health and Social Care, the Rt Hon Matt Hancock MP. We hope this will help guide the government’s forthcoming proposals for reforming social care in England.
QUESTIONS ABOUT SOCIAL CARE
Our helpline and local advisers are here to answer any questions you have about Parkinson's, including accessing care and support.
You can also find out more about Parkinson's UK's position on funding and delivering long term care.