Over the past year we have been investigating the impact of Covid-19 on adults and families of children with cerebral palsy.
Our findings highlighted that the pandemic caused a large amount of daily life changes that were difficult to cope with and had a broad range of negative impacts on our community.
Headline findings include:
- Regression in physical health: 59% of adults experienced a regression in their physical health and 42% of parents reported a regression in their children’s mobility.
- Mental health: More than 59% of adults reported a negative impact on their mental health.
- Lack of access to health services: Almost all children and adults with cerebral palsy live in pain. Of those, 91% use therapy to manage their pain. It may be interesting to note that every age group reported therapy as more important for their pain relief than medication. Yet, majority of them lacked access to suitable therapy. It was also discovered that 59% of adults and 42% children lacked access to adequate healthcare services to fully meet their needs.
- Lack of regular cerebral palsy health checks: 77% of adults had not been offered an annual review of their condition by health professionals and about 62% of children were not given timely medical reviews. One of the parents expressed, “The service provision for my child prior to Covid was poor and now it feels as if it is being used as an excuse for poor service.”
- Lack of access to medical equipment: 41% of adults and 11% of children lacked access to appropriate medical equipment to support their needs due to cerebral palsy.
- Discrimination: 100% of adults had been discriminated against due to cerebral palsy, of which almost 70% felt ignored and patronised, 50% had been verbally attacked and shockingly, 18% had been attacked physically. Almost all parents said their child had been treated differently, of which 75% mentioned being ignored and 62% felt others had been uncomfortable around them. One of the mothers disclosed “They think someone in a wheelchair can’t talk and have a voice.”
- Poverty & unemployment: 41% of adults were unemployed. 23% revealed that they didn’t have enough money to make ends meet or were living month to month.
- Gaps in Services: When asked what services they would find useful, the adults reported that improved access to annual medical reviews and mental health support is needed. Parents reported that their children needed appropriate medical reviews and access to physiotherapy.
Our findings were obtained from two national surveys undertaken in 2021
All participants were over 18 years old, had cerebral palsy and/or were parents/ care givers of children with cerebral palsy (mostly Unilateral and Bilateral Spastic), and lived in the UK. Most participants had at least moderate difficulty with mobility and at least one other health condition other than cerebral palsy. Difficulties in daily living, both in general and due to pain, were highest for housework, leisure activities and sleep. Amongst others, 82% of the surveyed adults had high levels of anxiety.
- Read a summary of our findings here
- Read the findings for the adults in full here
- Read the findings for the children with cerebral palsy in full here.
Our Response to the Findings
Just as cerebral palsy is a complex health condition, so too are the needs of those affected by it. For many people who live with cerebral palsy, life involves pain, isolation, depression and poverty on a daily basis. The pandemic compounded these disadvantages by blocking access to support, health services, equipment and therapy, which meant many people with cerebral palsy felt even “more disabled”.
Our investigation revealed that the needs of many people with cerebral palsy are not being met appropriately and there are gaps in services for both physical and mental health.
When asked what the impact had been on access to various health professionals, parents reported that their access to almost all health services had been significantly impacted by the pandemic and have yet to return to pre-lockdown levels.
We have been told that annual medical reviews were not offered to most adults. Even though it was rated as a very helpful service, but less than a quarter of adults reported receiving the reviews. This is disappointing as NICE* guidelines recommend an annual review as "an opportunity to identify changes; assess clinical and functional needs; check for problems and co-morbidities; and make sure that the person's needs are being met.”
Another concerning point is inequality, as many adults live in poverty and struggle to make ends meet. There is a shocking prevalence of discrimination faced by most people with cerebral palsy. Virtually all adults and parents reported experiencing discrimination and some have been physically abused.
Much more help is needed for families to enable children to get the best start in life. For children one of the areas most impacted by the Covid-19 pandemic was their Education, Health and Care Plan (EHCP), with parents claiming it has been extremely difficult to manage the changes in their child’s education.
Please help us by sharing our summary report, so that we can raise awareness and improve services for everyone living with cerebral palsy.
If you wish to contact us about our findings, contact us at firstname.lastname@example.org
A special thanks to our researchers Raquel Fantoni and Sophia Sheih for their invaluable work and the survey participants for their time.