Our Impact
We are a young organisation, but one that is already making an impact.
– In March 2022, a report from the All-Party Parliamentary Group (APPG) on Cerebral Palsy, commissioned by the charity, set out the minimum requirements for proper coordinated healthcare for adults with Cerebral Palsy. Key recommendations included the need for regional specialised support services, clear care pathways, and annual patient reviews. At present, none of this is available as care drops off a cliff face for anyone with Cerebral Palsy when they turn 18.
– We also commissioned a health economics study to calculate the cost of the package needed to provide proper healthcare: £20m per annum, equivalent to 42p per day for each of the UK’s 130,000 adults with Cerebral Palsy. Such a package would deliver considerable savings from preventing future costly healthcare, and, with healthier people being able to work, reduce the costs of benefits and increase tax revenue. Indeed, the study showed that if just 4,000 more adults with Cerebral Palsy gained employment, this would generate an economic gain of £80m per annum.
– In July 2022, we held a groundbreaking conference entitled Time for a new approach to adults with Cerebral Palsy, at the Royal Society of Medicine, bringing together over 250 clinicians, researchers and adults with Cerebral Palsy to discuss innovative solutions for a better future.
Event at the Royal Society of Medicine
– On World CP Day, 6 October 2022, we sent every MP a card with 42p as part of our campaign calling on the Government to provide proper healthcare for adults with Cerebral Palsy. A second stage of this campaign, addressing members of the House of Lords, took place in March 2023, World CP Month.
Graphic used in #42p campaign
– In November 2022, we launched our Working Group, comprising key clinical and political advisers, together with members of the community of adults with Cerebral Palsy, to advance the recommendations of the All-Party Parliamentary Group. The Working Group meets four times year and enables the charity to ensure that its plans for enhancing the health and social care support for adults with Cerebral Palsy is always guided by expert advisers.
– Enhancing the knowledge of GPs is a vital component towards improving their interaction with adults with Cerebral Palsy and in October 2023, we launched a training webinar via Red Whale to its 50,000 GP and Primary Care Clinicians. Since January 2024, we have been piloting in London our new web-based tool for GPs which enables them to find their local Community Neuro Team, to whom they can refer patients with Cerebral Palsy in need of specialist support.
– In February 2024, we took a major step towards developing an action plan for improving care for adults with cerebral palsy across London with a meeting chaired by Chris Streather, Regional Medical Director for NHS London. Attendees included representatives from all five ICBs in London and representatives of NHS England, London Rehabilitation Medicine and The Royal Society of Speech and Language Therapists.
– We are always working for our community’s voice to be heard that Cerebral Palsy is a lifelong condition. So, with a General Election all but certain this year, this is a very important moment for us to move this message up the political agenda.
We have assembled a coalition of disability charities and clinicians, calling on all political parties to include a pledge in their manifestos for the next General Election to recognise cerebral palsy as a lifelong condition. We’re also asking for a pledge to ensure all adults with cerebral palsy will get enhanced health and social care support from the next Parliament onwards, including an annual medical review.
– Our co-founder Emma has very quickly become a recognised expert speaker on the issues faced by adults with Cerebral Palsy, giving presentations in the UK and across Europe, most recently at the European Academy of Childhood Disability (EACD) Conference in Norway last month.
Emma and Miriam with fellow participants at the Norwegian conference
And all this is in addition to the direct support we provide each week to the community, through our Midweek Matters virtual meetings, covering topics ranging from adaptive fashion to parenting with Cerebral Palsy to mental health. There is also digital engagement through our social media channels and website, which offer considerable content and advice for our community, their families and their employers. Lastly, over the next few months, we will be visiting local adult Cerebral Palsy groups across the UK to understand better their needs and providing them with in-person programming content for their members.