Pearse Doherty (Donegal, Sinn Fein)
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I thank the Ceann Comhairle for selecting this important matter. I have put it down for the lottery five or six times. Spina bifida affects about one in every 1,000 children born in Ireland. For reasons still unknown, Ireland has one of the world's highest rates of spina bifida. As a result, there are children who are waiting for complicated surgeries and procedures for some time. They are waiting for life-changing surgeries, often in pain. They often need surgery to ease their suffering and to make their daily life and that of their families and carers a little easier. We are very lucky to have excellent voluntary supports for those effected by the condition, with organisations such as the Spina Bifida and Hydrocephalus Association doing tremendous work for these families. It understands the complexities of the condition and provides support and advocacy for families. One such family who have found themselves at their wits end is the family of Oisín Halpenny. I want to raise his case with the Minister of State. Oisín is a six-year old boy from County Louth who has spina bifida. I know Oisín and his mother, who is related to my wife, Róisín. Oisín's mother, Kelly, has told me that he has been on a waiting list since March 2018, which is almost three years ago. This is for necessary surgery needed to help Oisín in his day-to-day life.

In November last year, Oisín's ankles had deteriorated and the family was told that the operation now needed was a Grice procedure and a Russian transfer. The family was informed that this might change as his ankles deteriorated even more. His parents were told time and again that the surgery was scheduled only for it to be rescheduled and pushed out.

My question is whether Oisín's family is going to have to wait until the next stage of his deterioration for the surgery to happen, which may be too late. At that point, the doctors may need to go back to the drawing board and recommend another type of surgery, which will cause an inevitable further delay. I have raised this matter through parliamentary questions to the Minister for Health, Deputy Stephen Donnelly, who said in his response that he would review the case. I was also told that Covid-19 had impacted on scheduled surgeries. The Government needs to look at how the scheduling of urgent surgeries is being handled and to rethink how those surgeries can be carried out safely and quickly, even in the midst of the Covid-19 crisis.

Will the Minister and the Minister of State, Deputy Feighan, review Oisín's case and work to ensure he gets his surgery scheduled as soon as possible? On the wider issue, will they undertake to review the waiting lists for children with spina bifida, who are waiting on surgeries in Temple Street hospital and other hospitals? I am told by Spina Bifida Hydrocephalus Ireland, SBHI, that the main issues for children requiring essential services such as orthopaedics and urology is that there simply are not enough resources within the health system to look after them properly. This means that children like Oisín are left to live with unnecessary pain and disfigurement, a dynamic that affects their physical and mental well-being in a key phase of their development. We need enough consultants and we need those consultants to have the theatre time required to operate. We need a system to co-ordinate services in order that children with complex needs are not treated by each healthcare professional in isolation but are cared for by a multidisciplinary team which gives every child with spina bifida the best chance of reaching his or her full potential. Will the Minister of State work to ensure that consultants, theatres and slots are prioritised for children with spina bifida-related surgeries, treatments and other supports?

Frank Feighan (Sligo-Leitrim, Fine Gael)
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I thank the Deputy for raising this issue and giving me the opportunity, on behalf of the Minister for Health, Deputy Stephen Donnelly, to provide an update to the House on waiting times for paediatric operations, including those for children with spina bifida. The Minister and I sincerely regret that children can experience a long waiting time for appointments and treatment. I am conscious of the burden this places on them and their families. The Government's priority is to improve waiting times for all patients accessing hospital treatment across all specialties, including children with a diagnosis of spina bifida.

In response to the Covid-19 pandemic, Children's Health Ireland, CHI, had to take measures to defer most scheduled care activity between March and May this year. That decision was in line with the advice issued by the National Public Health Emergency Team, in accordance with the advice of the World Health Organization. Since June, CHI has continued to re-establish services, following HSE clinical guidelines and protocols to ensure they are provided in a safe, clinically assigned and prioritised way. CHI has advised my Department that orthopaedic surgery, and spinal surgery in particular, continues to be identified as a service priority. It is of note that key social distancing measures and infection prevention and control requirements, such as the 2 m distancing rule, have a material impact on the available physical space to deliver all hospital services, including scoliosis procedures. This has had a significant impact on both available capacity and operational activity levels.

In terms of support for children with spina bifida and their families, under section 39 of the Health Act 2004 the HSE has provided funding of €781,469 to SBHI this year. In addition, also under section 39, the HSE has provided funding of €127,000 to the Mid-West Spina Bifida and Hydrocephalus Association this year. A service level agreement between the HSE and SBHI is in place. The role of the HSE is to provide a multidisciplinary team approach which includes provision of health and personal supports required by people with spina bifida and incorporates hospital, primary care and community services. My Department recognises the great work done by SBHI in providing information, support and advice to people with spina bifida and-or hydrocephalus and their parents and carers, and in promoting social inclusion and equality for people with spina bifida and-or hydrocephalus in Irish society. The SBHI represents more than 8,000 people nationwide, consisting of those with spina bifida and their parents, siblings, friends and carers.

In regard to accessing scheduled care, officials in my Department remain in regular contact with both the HSE and CHI on waiting times for appointments and procedures across a wide range of specialties. The boy in question, Oisín, has been waiting for surgery since March 2018, as the Deputy outlined, and it has been scheduled and rescheduled. I hope we will be able to get a review into his case and those of people in similar situations. I will follow that up in the Department today. The Minister is committed to ensuring transparency around the waiting times that children experience. To that end, we welcome the work being undertaken by the National Treatment Purchase Fund, NTPF, to publish paediatric waiting lists for the first time. The NTPF has advised my Department that it plans to have that information publicly available in the first quarter of 2021.

Pearse Doherty (Donegal, Sinn Fein)
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I welcome the Minister of State's commitment to take a personal interest in Oisín's case and to review the issues I have raised within his Department. In a reply to me in November, the Minister acknowledged that waiting times are often unacceptably long and that this places a burden on parents and families. It is a huge burden and people are at their wits' end. It is not just Oisín's family but many others as well. The Minister told me in his response to my parliamentary question that he had asked the HSE to investigate this case and issue a reply to me. I still have not received that reply from the HSE and nor has Oisín's family. I am asking the Minister of State, as part of his commitment to take a personal interest in this case and to review it, to follow up on that and ensure a reply is issued by the HSE as soon as possible.

This is a very serious case and it is unconscionable to leave wee Oisín waiting any longer for surgery. Every month that goes past, his situation gets worse. I am asking the Minister of State, taking all the necessary Covid-19 precautions into consideration, to work with the HSE to ensure that he is given an urgent date for surgery and that the surgery is carried out. In addition, as I have said, this is not just about Oisín. His situation is an example of what is happening. Will the Minister of State ask his Department officials to work with the HSE to ensure the waiting times for spina bifida supports and treatments are reduced in order that children like Oisín - little boys and girls - never have to suffer like this, when all they need is treatment and support? Unfortunately, the system does not have the capacity to deliver that treatment in a timely and supportive way at this point in time.

Frank Feighan (Sligo-Leitrim, Fine Gael)
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The Minister and I are acutely aware of the distress and inconvenience caused to patients and their families when urgent care is delayed. Improving waiting times for hospital appointments and procedures remains a key commitment for the Government. However, it is acknowledged that the challenges faced by the health system in 2020 are unlike anything we have ever faced before. We are very aware of the impact the Covid-19 crisis has had on our health service and the delivery of scheduled care. CHI's commitment to prioritise spinal surgery and find new ways to deliver care exemplifies the work undertaken by the HSE to provide care in a challenging Covid-19 environment.

The Minister is committed to ensuring that access for children, including children with spina bifida, is improved. CHI has advised the Department that its current level of activity is running at approximately 85% of pre-Covid levels. CHI has increased the number of virtual clinics taking place to address outpatient waiting lists.  CHI is also maximising opportunities to use facilities, such as at Connolly hospital and HSE's Citywest facility, as alternative settings for clinics in order that timely appointments may be provided to patients.  Officials from my Department continue to engage on an ongoing basis with representatives from CHI and the HSE to monitor access to services, waiting lists and activity levels.

The Department also welcomes the work undertaken by the National Treatment Purchase Fund, NTPF, to publish paediatric waiting lists and looks forward to seeing that project coming to fruition early next week. I will follow up on the case of Oisín and many other children and I hope to get back to the Deputy in the coming days.

Seán Ó Fearghaíl (Kildare South, Ceann Comhairle)
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The Minister's assistance is appreciated.