Hands up if you think that cerebral palsy is a childhood condition. If your hand went up you are not alone. But the truth is that while cerebral palsy, or CP, starts in childhood it is a lifelong impairment that affects a person’s movement at any age.
Approximately 3,000 children and 9,000 adults live with CP in Ireland yet as more people with CP move into the adult healthcare system their needs are not being met and this has agonising consequences.
Our research at CP-Life Research Centre at Royal College of Surgeons in Ireland (RCSI) University of Medicine and Health Sciences has found that adults with CP face particular challenges related to their condition. To make things worse they face a lack of co-ordinated services and encounter healthcare workers in Ireland who do not understand the unique and changing needs of adults with CP.
Most people with CP have the same life expectancy as someone without CP yet resources and research mainly focus on childhood care, leaving a growing number of adults with CP to contend with a fragmented and insufficient system.
Our research in Royal College of Surgeons in Ireland has found that when teenagers with CP are discharged from children’s services they are often left to find their own way through confusing, inaccessible and fragmented healthcare options, which leads to a shortfall in services.
For Éabha Wall the gaps in her support became a huge issue. “As a child I would have been fairly regularly in and out of paediatric physiotherapy. Then, once I transitioned to adult services, I had to fight to get access. I would be given a six-week block of physio treatment and then just left off the list. I can’t sustain myself on two six-week blocks a year, I have cerebral palsy every day of the week.”
Éabha is not alone. Our research showed that 23 per cent of adults with CP in Ireland report that they don’t receive the physiotherapy they need. This unmet need only increases among adults with CP as they get older.
The research into how adults with CP experience healthcare, which reviewed international studies involving over 14,000 individuals, shows that some of the problem is down to a lack of awareness among healthcare professionals.
Fiona Weldon encountered this lack of awareness when she broke her ankle, and it resulted in unnecessary suffering. “I was in the A&E for 10 hours with no real pain relief, and because I have CP my spasms increased because of my broken ankle. The pain was excruciating but it didn’t seem to matter.
As it is my whole life has been turned upside down
“I told them not to put a really hard cast on my foot because my foot would just fight to get out of the cast. But they did, and then they had to put on a different cast. But they didn’t cast my foot in the correct position. They didn’t listen to me.”
Weldon ended up spending 11 days in hospital, where she believes the immobilisation affected her overall recovery. Then she had to refer herself for physiotherapy. The first local physiotherapy appointment was scheduled for five months later so Weldon took matters into her own hands and started to work with an experienced fitness coach.
“In the last couple of weeks I have started walking again with a frame, but I’m still in extreme pain a lot of the time,” says Weldon, who has needed to rearrange her home, buy new furniture and request an increase in her Personal Assistance hours. “It has cost me a huge amount to get that support but if I didn’t get it when I needed it I don’t know where I’d be today. As it is my whole life has been turned upside down.”
We know from our research that adults with CP face particular health challenges with ageing. Our review of 69 studies in the published literature highlights the increased likelihood of bone and joint problems, heart disease, high blood pressure and mental health disorders like depression and anxiety.
The research also shows that many adults with CP fall very frequently, which can have a serious impact on their lives. Regular reviews and early intervention to reduce complications such as falls can support adults with CP to stay healthy and take part in all areas of life including employment.
But, as Weldon highlights, many adults are simply not aware how CP can affect health across the lifespan. “I got on with my life, I went to school, college, had kids, got married, all that sort of thing, and CP didn’t really play a part in that,” she says. “Then, when I was about 36, I noticed that my balance wasn’t right and then that I was unusually tired. And then when I couldn’t walk unaided it became an issue. I was very angry in relation to not knowing that my CP could look different as I got older.”
It’s more common than not that you arrive and there’s something that doesn’t suit, or there’s no disabled toilet, or the disabled toilet they have isn’t actually large enough to accommodate a chair
People with CP often face physical barriers too when trying to access health services. Many healthcare facilities do not have accessible equipment, such as adjustable examination tables or wheelchair-compatible scales, making them unwelcoming environments. Transportation to and from services can be difficult and costly to boot.
Wall describes how easy access to information would help her to prepare. “I would appreciate if service providers had accessibility as a very easy thing at the top of websites, telling you there are steps at the front and there is side door with a ramp, or before getting into your car this is how you are going to access the building in the safest and easiest way.
“It’s more common than not that you arrive and there’s something that doesn’t suit, or there’s no disabled toilet, or the disabled toilet they have isn’t actually large enough to accommodate a chair.”
The evidence is clear, both from people with CP and from our research, about the shortfall in services in Ireland for adults with CP, that understanding and support urgently needs to change. Some of that change is relatively straightforward, such as listening to adults with CP who currently feel invisible and unheard in the Irish healthcare system.
People with CP also need access to affordable, proactive care in accessible environments where multidisciplinary teams work together in order to prevent and slow the health issues that people with CP are more likely to face, including falls, pain and mental health issues, as they get older.
[ Cerebral palsy: What is it, who gets it and what does the future hold?Opens in new window ]
The preventive approach is key, says Emma Livingstone, who lives with CP and is founder and CEO of UK charity UP – the Adult Cerebral Palsy Movement. “By providing equitable healthcare for adults of all ages and taking a preventive healthcare approach, we can help people with CP to live healthier lives. This proactive approach not only reduces the need to access care at a higher point of need, reducing healthcare costs, but also supports our community to stay in employment, boosting economic growth, easing pressure on the healthcare system, and ensuring the sustainability of health and social care services in the long term.”
- Dr Jennifer Fortune and Dr Manjula Manikandan are members of the CP-Life Research Centre at RCSI University of Medicine and Health Sciences, which was established as part of a Programme of Excellence launched by the Cerebral Palsy Foundation in Ireland. They were supported by a Writing Mentorship from Evidence Synthesis Ireland which aims to build capacity in communicating the results of evidence syntheses by writing for the public.
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