"With the support of the Wellbeing Fund, we feel more connected to our community than ever..."
Cerebral palsy (CP) is the most common physical disability in childhood. Around 1 in 500 births results in a diagnosis of CP. For 25 years, Cerebral Palsy Scotland has provided specialist intensive therapy using the Bobath concept for children and adults as well as a range of funded group activities that brought people with CP together. We are motivated by supporting the needs of people with CP and during the coronavirus pandemic we have seen these needs change.
In March 2020 people with CP were specifically mentioned on the UK Government’s list of those who were particularly vulnerable if they caught COVID-19. This led to a huge increase in enquiries. According to government guidelines, our centre had to close and we quickly had to understand what support our population needed and pivot our services to meet these new needs. We were able to use funding from the Wellbeing Fund specifically to address these.
People were worried about two key things: Am I more at risk of catching COID-19 because I have CP? And, how they should respond to the government’s advice on staying safe. Cerebral Palsy Scotland produced specific information that related to CP and COVID-19 which we have continued to refine and update. This has been viewed by more than 12,000 people.
Emerging government guidance also presented a challenge. Many people with CP can’t wash their own hands or find it difficult. We produced a guide for people with CP and their carers to help overcome this.
For someone who relies on carers visiting each day to wash, dress, prepare food, undertake similar daily tasks or simply move your body, social distancing and self-isolation is impossible. We were able to reassure people on how they could engage with carers, source PPE and ensure safe working practices.
Around 30 – 40% of people with CP in Scotland were shielding. Others were anxious that they hadn’t received an official letter and chose to shield. There were many people who were worried about securing online grocery slots or collecting prescriptions and we were able to share information to connect people with local networks or the Scottish Government’s helpline.
Cerebral Palsy Scotland have been available on the phone throughout and we immediately implemented the NHS Attend Anywhere video consultation system. Virtual therapy sessions have ensured that we were able to help families in their own homes across Scotland. 70% of people with CP reported that they feared that lockdown would cause a decline in their physical wellbeing and as time went on, the demand for online consultations increased as the impact of missed routine appointments, of reduced activity and isolation was felt.
Parents reported the impact of losing regular support such as equipment assessments and community physio, alongside the difficulties of juggling home, schooling, working as well as the extra demands of having a disabled child. Both physical and emotional wellbeing have been under considerable strain and our online consultations have included help with movement, positioning, equipment, coronavirus risk, safe return to school, at home activities and communication.
A weekly ‘virtual coffee’ for adults with CP has built up a regular group of attendees which has tackled isolation issues, enabled peer support and information sharing. Online exercise and movement videos have offered practical tips and examples of at home movement covering handling and supporting children of different ages from babies to older children with CP and exercise suitable for people of all levels of mobility.
Since the beginning of April we have sent out a regular newsletter to over 1500 people each week (on Thursdays after the First Minister’s briefing). Over the 17 weeks of lockdown, this has been a critical link in connecting people with CP with the support available as well as interpreting what the changing restrictions mean for them.
By listening to our population during these times and with the support of the Wellbeing Fund, we feel more connected to our community than ever. We will continue to listen, to understand changing needs and support people with cerebral palsy as we emerge from lockdown as our centre re-opens. Evolving our services to meet need is something we continually strive to do, but for now, we are delighted to be able to welcome people back into our centre again. Stay safe, stay well and stay in touch!