Health Heroes: scoliosis campaigners battling to reduce waiting times for children

Claire Cahill and Michelle Long set up the Scoliosis Advocacy Network which supports more than 650 families whose children have scoliosis [curvature of the spine].

Thanks in large part to their campaigning – and Claire's participation in the RTÉ documentary, Living on the List, in 2017 – the Ombudsman's Report on Scoliosis and the HSE Action Plan on Scoliosis were published.

Through the advocacy network, Claire and Michelle organised fun meet-ups in Dublin Zoo and a fun weekend in Barretstown House for families with a child with scoliosis. They raised more than €14,000 for the orthopaedic charity Straight Ahead and hosted a huge toy collection for children having surgery for scoliosis in Irish hospitals.

They continue to campaign to reduce waiting times for a child’s first appointment with an orthopaedic consultant and to ensure that the maximum waiting time for surgery is four months.

‘Good friendships make for a healthy life as much as regular exercise and healthy diet’

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‘We run for hope’

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Selfless volunteer going the extra mile for half a century

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1) What is your proudest achievement?

Claire: Being a mum to my three beautiful boys – Matthew (9), Darragh (8) and Donnacha (6) – and managing to get back to living life to the full after I suffered a cardiac arrest when I was 31. One of my proudest days was the launch of the Ombudsman's Report on Scoliosis – Michelle and I had worked so hard to have timely access to scoliosis care acknowledged as a children's rights issue.

Michele: Balancing being a mum to three children – Lisa (24), Tommy (7) and Harry (5), working full time and running the Scoliosis Advocacy Network with Claire is a daily achievement. Claire and I were named Kilkenny people of the year 2017 which was a lovely acknowledgement for the work we do.

2) What motivates you in your work and life?

Claire: Knowing that I can bring about change and that everything we do matters. I love my job as a community mental health nurse and it's a privilege to visit people in their homes to help them recover and live well again.

Michelle: Making an impact and improving people's lives for the better. I am passionate about my job as a social care manger. And, my son, Tommy (7), who has congenital scoliosis and spends his life dealing with hospital appointments and multiple surgeries, is the bravest person I know. He motivates me to continue to fight for children with scoliosis to spend their childhoods having fun and not languishing on a waiting list.

3) What do you do to keep mind and body healthy and well?

Claire: Since my cardiac arrest, I've learnt to live in the moment. I don't stress about the little things. If something is worrying me I think about how can I make it better and then I do that. I enjoy walking in the countryside or listening to a good podcast.

Michelle: Family days out and planning holidays keeps me in a positive frame of mind. I talk through any worries I have with my husband. I also like being outdoors with our children and our dog.

4) What are the most important factors to maintain a healthy society?

Claire: The 17 Sustainable Development Goals (SDGs), which every country in the world has signed up to. They set out to end poverty, protect the planet and ensure a good standard of living for all. For me, this translates into giving everyone access to good healthcare and education and a chance to achieve their best in a way that sustains our planet.

Michelle: People must take responsibility for their own health and be made aware of the dangers of alcohol, poor diet and smoking. Ill people should be able to see a doctor or consultant as soon as they need to.

5) What needs to be done in Ireland to achieve this?

Claire: The SDGs should be taught in schools so children understand their role in maintaining a healthy society. Everyone – young and old – should have access to health and social services. We must become a more caring society.

Michelle: The chronic waiting lists for first appointments with consultants needs to be addressed so conditions are identified and treated at an earlier stage. GPs should be supported better in the health system.

6) What do you think is the most pressing health issue in Ireland today?

Claire: Access to care. Long waits for specialist care means patients deteriorate on lists and this results in more costly procedures and longer recovery times. Children have to wait between 24-36 months for their first spinal assessment. Older people are left in acute hospital beds waiting for long-term care placements.

Michelle: A health system publicly judged by the number of patients on trolleys is abysmal. The shortage of GPs and problems recruiting and retaining staff is extremely worrying considering our ageing population.

7) How do you think the Minister for Health needs to tackle this?

Claire: The Government needs to sanction action and hold people to account. There are too many talks, focus groups, roadshows and reports and not enough action. For example, there is little or no accountability if the four-month waiting target for scoliosis surgery is not met.

Michelle: I believe the financing of the health system needs to change to activity-based funding which means that hospitals would be paid according to the number of patients they treat. There also needs to be more investment in primary and community care.

8) What do you do to relax and unwind?

Claire: I love to listen to music and sing aloud. Thankfully, I live in the countryside so my neighbours can't (or pretend not to) hear me.

Michelle: I love to read a good book or chat with friends while drinking tea.

9) What makes you laugh?

Claire: My husband. He's a very funny guy and even when I feel sad, he can really make me smile. We worked together on a hospital ward and he could always make my day brighter and he still does 11 years later.

Michelle: I have the most fun and laughter with my husband. He has been making me laugh for 14 years! It's great to have someone to laugh so hard you cry with.

10) Where would you like to live other than Ireland and why?

Claire: The south of France. As a family we usually go here for our holidays and we always have such an amazing time with so many happy memories made.

Michelle: Having lived in Australia and the US in the past there is no place I'd rather live than Ireland. Family is very important to me and as they all live here so I couldn't stray too far.

[ irishtimes.com/healthheroes ]

Our Health Heroes
1 - Martin Nevin: Even unwashed and medicated up to my eyes, Martin makes me feel beautiful
2 - Maureen Durcan: That so many live on the poverty line in Ireland is incredibly sad
3 - John Burke: Managing mental health should not be like climbing a mountain
4 - Derek Devoy: The Kilkenny taxi man whose drive saves lives
5 - Sarah Fitzgibbon: Society has to stop treating the marginalised and disabled as charity cases
6 - Kathleen King: I wanted to make sure no one else would have to wait nine years for a diagnosis
7 - Caoimhe Bennett: The schoolgirl raising understanding about young carers
8 - Ann Norton: Our hospitals are a disgrace. We are letting down our doctors, nurses and whole society
9 - Una McNicholas: My proudest achievement is being able to help care for my sister
10 - Catherine Cox: Family carers are a hidden army of exceptional people fulfilling a role they did not ask for
11 - Prof Rose Anne Kenny: Good friendships make for a healthy life as much as regular exercise and healthy diet
12 - Dr Robert O'Connor: Within my lifetime we could eradicate cervical cancer with the HPV vaccine and screening
13 - Claire Cahill and Michelle Long: Scoliosis campaigners battling to reduce waiting times for children