For World Cerebral Palsy Day, UP is again calling on the government to adopt NICE guidelines so that adults with CP receive joint up healthcare.
To bring attention to the reality that CP is a lifelong condition, the charity has launched a series of images to illustrate the lack of support available to those with CP throughout their adult lives. Positioned in front of Parliament Square, the symbolic gathering serves as a public statement to action real change.
Cerebral Palsy is a lifelong condition, so why is there not lifelong support?
Stats show that 90% of children with Cerebral Palsy reach adulthood and find themselves at a cliff-edge, without the support they had relied upon for their first 18 years of life[1]. As 130,000 adults live with CP, this makes the largest group in the UK living with a physical lifelong disability.
From all ages and backgrounds, the image depicts a line up of 21 people with cerebral palsy. Lined up in age order, it represents the full, adult lives of those with CP – proving why the message is so important.
Drag Queen known as ‘Sugar Cube’, Wayne Allingham, Actor known best for ‘Sex Education’, Keron Day, and Valerie Lang OBE are just some of those who featured in the line up outside Parliament Square. Nick Jacobsen, who is featured in the image, commented: “As a proud ambassador of UP Movement, it is an honour to be part of the Lifelong Campaign, demonstrating an important aspect of cerebral palsy during adulthood with regards to challenges in healthcare and lack of support. This is an opportunity to show people that we as a community need our voices to be heard, as well as helping society to see our abilities, not our disabilities.”
With no clear care pathways for adults after 18 yrs old, this means they don’t receive the healthcare and support they deserve later in life. What’s more, those who try to seek support are then at a higher point of need, with a medical team who are unable to understand their needs and the best ways to support them.
The charity’s goals are in support of the official CP Charter, recognising Cerebral Palsy as a lifelong condition and therefore:
- Enabling access to the framework used by GPs to identify individuals with long term conditions, and offering annual medical reviews.
- Implementing systematic reviews leading to specialist neuro rehabilitation pathways for health interventions and for accessing and staying in work.
- Funding dedicated key professionals to advocate, coordinate and support individuals with CP to live and age well.
- Investing in recruitment and training to increase specialist knowledge of Cerebral Palsy across health and social care.
Emma Livingstone, Founder and CEO of UP Movement states: “Our mission has not changed at UP Movement. We hope people recognise the importance that adults with Cerebral Palsy deserve support throughout their whole life, not just until 18. I hope these incredible images help to showcase our message and shine a light on the issue which continues to persist. Not only do we want to raise awareness, but we strive to take action; ensuring all get access to the essential services throughout adulthood. We urge everyone to advocate for better services and care, and support research into the long-term effects of the condition.”
The charity aims to make a stand against the lack of support those with CP receive throughout their life. By bringing the issue to the forefront, in such an iconic location, it hopes to urge policymakers, healthcare providers and the wider community to recognise the long-term needs of people with CP and make them take meaningful action to address the gaps in care, resources and support.
To join in the campaign to move CP up the political agenda, add your name in support of the CP Charter here: https://upmovement.org.uk/our-movement/charter/
[1] All-Party Parliamentary Group Report, March 2022