Mary McCarthy: Cerebral palsy care in Ireland is about to benefit from a remarkable step forward

On Monday, the Cerebral Palsy Foundation, a global not-for-profit, launched a major programme in partnership with Irish universities and Children’s Health Ireland that will radically improve the quality of life for those living with CP.

It seems an incredible step forward that will have far-reaching effects beyond also helping the 3,000 children and adolescents and 9,500 adults with CP in Ireland.

John and Patrick Collison, the brothers who co-founded Stripe, are among the donors of €11.6m in philanthropic funding for this programme, which will not only change the lives of the 150 babies born with the condition in Ireland each year; it will help create a more inclusive environment around disability by allowing those living with CP reach their potential and participate more fully in life.

I think many people are unsure what CP is, or get it mixed up with conditions such as cystic fibrosis, but CP is the most common physical disability acquired in childhood.

People see news reports of big medical payouts, and this unfortunately shapes people’s understanding of CP. This programme is a big opportunity for change. Three babies are diagnosed each week with CP in Ireland, and this project will change many of their lives.

CP is an umbrella term for damage to the developing brain, the vast majority of which happens during pregnancy.

Symptoms vary greatly. It can affect the whole body or be limited to one or two limbs. People with CP have problems with movement and coordination.

They may have additional problems, such as with speech, vision and learning. One in two report chronic pain.

The idea for the programme came about when Lily Collison – the mother of Patrick and John, and whose youngest son Tommy has the condition – wrote a book on CP and was then invited to join the board of the global Cerebral Palsy Foundation (CPF).

At a CPF board meeting last year, executive director Rachel Byrne spoke about the foundation early detection and intervention programme being rolled out abroad. Lily phoned her afterwards to ask if they might bring the programme to Ireland?

The wheels were then set in motion, with the plan expanded to include all ages.

“When a parent brings their child to school, they trust their child will get the education they need,” Lily said.

“They do not need to go out and search for this, to constantly worry. This is my dream with CP care in Ireland, that automatically the best care will be available to all families.”

Rachel said it’s amazing this one-of-a-kind programme is happening here.

“A lot of the time we hear what is not possible. There are pockets of really good care around the world, but this plan in Ireland includes everyone from infants to adults. We expect the model to be taken and used elsewhere,” she said.

The last six months have been spent creating the infrastructure, and Ireland is already reaping the benefits.

“The rollout of the first stage has already started,” Rachel said. “This week, 120 doctors and physios in Ireland are being trained by world-renowned expert Dr Nathalie Maitre, and already three Irish babies are enrolled in an international clinical trial because of this project.

“Currently, diagnosis in Ireland is two years or older, so our goal is to reduce that to under 12 months and in many cases under six months. Early intervention is crucial.

“If you had a stroke tomorrow, you would start rehabilitation straight away, but when a baby has a stroke, a common cause of CP, we wait two years and lose that precious time.”

Lily points out this programme is not just about babies.

“It was designed from the start to include children, adolescents and adults across hospital and community care,” she said.

“It is about providing the framework so families can get what they need without having to go searching for best care.

“My son had very good therapies in Ireland, but I had to bring him to the US for multi-level surgery that he needed when he was nine. Getting the right surgery at the right time helped shape Tommy’s life.

“I can honestly say that getting that surgery for Tommy is my proudest achievement in life. Tommy is nearly 30 now, living and working in tech and soon to be married. CP is not defining his life. I am thinking of all the Tommys out there. What I would love to see in Ireland is that we will have the world’s leading CP specialists so children do not have to go abroad for the treatment they need.

“Due to outdated systems and inappropriate interventions, lives are often significantly and unnecessarily compromised. This has long-term social as well as economic implications if people cannot fully take part in life.

“I know the overwhelming responsibility and the urgency you feel when you receive the diagnosis that your child has a lifelong disability. I would have loved if a programme like this existed all those years ago when Tommy was first diagnosed.”

This programme is remarkably positive news for all those living with CP in Ireland, and for their families, and will act as a model of care to benefit 17 million people worldwide.

We hear so much negativity around our over-stretched health system these days, so this programme is welcome news.

Economically, it is an advantage if more people can work, and socially all of us benefit when life is more inclusive.

“Disability is part of the human experience. It is nothing to fear. Most of us will be affected by it eventually, whether by accident, ageing or illness,” Lily said.