Seanad Order of Business: MRI Scanners for Children

Senator Jillian Van Turnhout: I wish to raise the issue of the MRI scanner for children in Our Lady’s Children’s Hospital, Crumlin and the associated waiting list for children. The scanner has broken down, and I believe this is not an irregular occurrence. It broke down at least one week ago but no contingency plan is in place to manage the care and assessment of children. My understanding is that there are only two MRI scanners for children in Ireland with the appropriate medical support, one in Crumlin and the other in the hospital in Temple Street. Children require a general anaesthetic. The result is that the waiting list in Crumlin currently stands at 28 months and I do not know the length of the list for Temple Street – perhaps the Minister can enlighten me. I understand the list is divided between the two hospitals.

I wish to share a case with the Minister of State. Obviously, I will not disclose the name of the person on the floor of the Seanad, but I am happy to provide it to the Minister of State. It is very illustrative of why this is such a critical issue.

One young boy, who is now six years of age, when aged three had symptoms including very poor balance, being tired and lethargic and the development of a tick in his head. His parents were able to afford to bring him to a neurologist on a private basis. The neurologist advised them that the child probably had flat feet and questioned whether something was happening in the home which caused him to develop the tick. Thankfully, the mother insisted on the scan. The neurologist was reluctant to put the child forward saying the child was not an urgent or high priority case. Given that there are only two MRI scanners, at that time the waiting list was eight months.

The child went for an MRI scan over two and a half years ago on a Friday morning and the parents were advised that they could receive the results in about four to six weeks. They were in the recovery room 30 minutes later and a team of medical staff surrounded the bed. The team said a brain tumour had been found and a biopsy needed to be done, the earliest opportunity for which was Monday. The first test was done on the biopsy on Monday and the parents were told there was an 80% likelihood that the child had cancer, but the results were inconclusive and a second, more intrusive, test needed to be done, and was done two weeks later. The further test found that it was a low-grade tumour which required regular monitoring but, thankfully, was not cancerous.

These parents initially brought their child for three-month checks, and then tests on a six-month basis to establish a baseline and ensure they could monitor the situation. At a six-month scan in April 2014, they were told that they were not allowed to leave the hospital as the child had developed hydrocephalus. He was transferred by ambulance to Temple Street, monitored overnight and had surgery the next morning. The parents advise me there were no obvious signs in the lead-up to that test in April 2014 and nothing made them feel that the test would be any different.

The child has scans every six months. Last Friday he was due to have his next six-month scan, but the parents were told on Tuesday last week that the machine was not working and it would take two weeks to get a part from Germany, which is mind-boggling – I would get on a plane and get the part. They were advised that the new appointment would most likely be in early 2016. Thankfully, because of the pressure the child’s mother applied and, I imagine, the debate we are having here today, she received a call yesterday to say the child would have an appointment early next week.

I am thinking of all the other parents out there. This is a low priority, non-urgent case involving regular monitoring. How many other children are low priority? How many other parents have been told that their children’s cases are not urgent and, therefore, they are on a waiting list? As I said, the waiting list is very long. Why are MRI scanners for children not in operation seven days a week? It would give parents assurance if an MRI scanner did not show anything of concern. A wait of 28 months to find out whether something is wrong is unacceptable.

The parent who contacted me is obviously concerned for her child, but in her generosity is extremely concerned not only for the children lucky enough to be in the system but those on the impossibly long waiting list. I have been told by a senior source in Our Lady’s Children’s Hospital, Crumlin, that children requiring a general anaesthetic, usually those aged under 12 years, face a waiting list of 28 months.

Over the past two days I have discussed this issue with a number of friends. I could not believe the number who shared frightening cases they knew directly or of friends’ children who are on the waiting list to ensure their children can get MRI scans. Over the past three and a half years waiting lists have increased from eight to 28 months. Even eight months is far too long, but the parents to whom I referred were told their child’s case was non-urgent and not a priority, it was likely the child has flat feet and something was happening at home. They were able to afford to go an alternative route, but I want to know the situation regarding the MRI scanner for children in Ireland and the length of the waiting list.

Deputy Joe McHugh: thank the Senator for raising this issue. I am taking this matter on behalf of my colleague, the Minister for Health, Deputy Leo Varadkar, who is elsewhere on Government business. I want to reassure the House about the MRI scanner in Our Lady’s Children’s Hospital, Crumlin. I understand some concerns may have been raised last week about whether the machine is in working order. I am happy to advise the House that the MRI scanner was fully operational last week, other than on Friday, 13 November, when scans were postponed to allow for repairs to be carried out on the machine. The repair on Friday affected five patientSLOTS and these scans have been rescheduled for this week. MRI scans recommenced fully on Saturday. Appropriate contingency plans were put in place by Crumlin hospital, with Temple Street hospital, for any emergency cases that might have arisen on the Friday while the machine was being repaired. On the broader issue of waiting times for MRI scans at Crumlin hospital, the capacity to provide these scans is, as the Senator pointed out, under pressure. Referral patterns reflect the tertiary paediatric nature of services provided in the hospital. The oncology specialty generates the largest portion of MRI activity. Crumlin hospital also provides the only paediatric cardiac MRI service in Ireland. The unit takes consultant referrals from local maternity hospitals and from hospitals nationally where paediatric MRI with general anaesthesia for younger patients is required. Demand for MRI services is steadily increasing from all specialties. In this context, particular attention has been paid to optimising existing capacity and managing demand through clinical triage. MRI capacity at Crumlin hospital has increased in recent years and is at almost 2,000 scans per annum. This compares with 1,600 scans in 2011. The MRI service now operates for 37 hours per week and staff are available to provide lunchtime cover as demand requires it. In addition, a service is provided from 8 a.m. to 3 p.m. on Saturdays, which is suitable for those patients who do not require anaesthesia or sedation. This has improved access and decreased the waiting list.

To maximise capacity there is a strong focus on active local management of appointments, with the result that did not attend, DNA, rates are extremely low. Triage is also a key element in managing demand and preventing inappropriate referrals. Under the triage process, between six and 14 referrals weekly are triaged as urgent and these are dealt with as soon as possible. Unfortunately, however, patients from specialties other than oncology and cardiology who require a general anaesthetic and who are categorised as routine experience long waiting times of between 15 and 27 months. I emphasise that the Government sees this as unacceptable and acknowledges the difficulties which delays cause for patients and their families.

Crumlin developed a business case for resources to increase capacity and submitted it for consideration in the context of the current service planning process, which is still ongoing. The HSE and the Department of Health continue to work together to address waiting times for diagnostic services, including MRI, and to ensure appropriate collection and reporting of MRI waiting times.

Senator Jillian van Turnhout: I thank the Minister of State. Obviously, somebody is telling somebody untruths because why would those at Crumlin hospital have telephoned the mother I mentioned on Tuesday and said the machine would be down for two weeks? For me, there are serious questions to answer. I am not questioning the veracity of what the Minister of State said but I am concerned that the truth is not being told. How do we actually know this is urgent? The Minister of State spoke about the routine waiting list of between 15 and 27 months. My reference to a 28-month waiting list is probably more accurate. I know the Minister of State is a parent and that he understands what it is like for parents to worry about a child. I welcome the fact that the Government sees this as unacceptable. I will continue to monitor it because I find it totally and utterly unacceptable that we are asking parents to wait this length of time to be reassured or to ensure their children get the correct and appropriate treatment. We know the importance of early intervention and prevention, particularly in the lives of children, and we need to increase the pressure in respect of this matter. I hope the business case will be put through and we will ensure children are seen in a timely manner. The case I have raised today was routine and the neurologist did not wish to refer it. How many other children are like this?

Deputy Joe McHugh: I appreciate the Senator raising this extremely important matter. I do not doubt that her contact with the parent concerned will have highlighted to her the obvious distress the family went through. Statistics are statistics and, unfortunately, demand for the MRI scans increased from 1,600 in 2011 to 2,000 per annum at present. The Minister is not using statistics as an excuse. However, he will use them to try to improve the service and I have no doubt he will ensure that, where possible, resources will be directed to where they are needed. I will certainly convey the Senator’s message to the Minister and I thank her for raising the issue.

Senator Jillian van Turnhout: I thank the Minister of State.

23 May 2013: Quarterly Meeting of the Joint Committee on Health and Children, the Minister for Health, James Reilly TD, and the HSE.

Question 32: Provision of Neuro- Rehabilitation Services

Question 33: Neurologist waiting lists

Question 34: Children’s palliative care programme

Question 32: Provision of Neuro- Rehabilitation Services

Following the publication of the National Policy and Strategy for the Provision of Neuro-Rehabilitation Services in Ireland 2011-2015 (December 2011), an undertaking was given to publish an implementation plan “forthwith”. Why has this implementation plan not been published to date? When will it be published? And, will it meet its 3-year implementation schedule by December 2014?

The Department of Health and the Health Service Executive (HSE) have developed and published the “National Policy and Strategy for the provision of Neuro-Rehabilitation Services in Ireland 2011 – 2015”. In addition, the HSE is developing its Rehabilitation Medicine Programme within the Clinical Strategy and Programmes Directorate. The Report is the overarching policy on neuro-rehabilitation services and includes proposals for a framework for the future of neuro-rehabilitation services in Ireland, including key elements such as:
• guiding principles;
• implementation structure;
• methodology for implementation; and
• information and communication.

The Report recognises that given the current economic climate, the focus in the short to medium term has to be on re-configuration of services, structures and resources and the enhancement of the skills and competencies required to meet the changing context.

The key priority areas, as identified in the HSE’s National Operational Plan for 2013 are to:
• Map and develop Integrated Service Area level rehabilitation networks;
• Implement the model of care for rehabilitation services within the networks with a focus on community rehabilitation.

An implementation plan beyond the overall operational plan commitments would not be beneficial, as the work involved to progress networks and teams will require to be flexible and responsive to the areas identified and to their specific service profiles.

The Rehabilitation Medicine Programme has been working in collaboration with the National Disability Unit as part of an expert Working Group planning for the implementation of the Report. The Rehabilitation Medicine Programme has incorporated key elements of the Report into its own Model of Care and adopted the Strategy’s recommendation of “hub and spoke” model for specialist rehabilitation services and is keen to progress with a comprehensive model for the continuation of such service into the community. This co-operation will continue in 2013.

Question 33: Neurologist waiting lists.

What plans are in place to tackle waiting lists to see a neurologist in public hospital out-patients clinics, which are over 4 years for more than 1,000 patients? And, what will be done to cut the waiting time for neurosurgery, which is currently over 6 months for 37% of patients requiring this treatment?

Outpatient Services
An Outpatient Services Performance Improvement Protocol has been developed to improve the provision of outpatient services in all publically funded healthcare facilities providing outpatient services which will include neurology referrals. A minimum standard has been established of no patient waiting greater than 12 months by 30th November 2013. A primary target list has been developed for each hospital identifying all patients that will breach the target if not seen by 30th November 2013. Capacity analysis is currently being undertaken in all hospitals with regard to meeting this target. All hospitals are developing plans by specialty including neurology at present to address long waiting lists. Solutions being considered to tackle waiting lists to see a neurologist in public hospital out-patients clinics include data validation, patient level validation, additional clinic slots, additional clinics and capacity within the region.

Inpatient Services
In relation to inpatient neurosurgery services there are currently 452 patients awaiting inpatient/day case neurosurgery. Of this total 288 are waiting 0-6 months and 164 are waiting > 6 months.

The maximum wait time guarantee for all adults awaiting any type of inpatient or day case surgery is 8 months in 2013. The aim is for all hospitals to systematically reduce this maximum wait time each year by matching capacity with demand, eliminating inefficiencies in the patient pathway, ensuring the strict chronological management of patients of equal clinical priority and implementing the recommendations of the Surgery Clinical Programme

Question 34: Children’s palliative care programme

To ask the Minister for an update on the children’s palliative care programme currently funded by Irish Hospice Foundation (IHF) and HSE. In particular: an assurance that all 8 children’s outreach nurses (5 IHF funded/3HSE funded) are now in post and if not, why and when will they be in post?; to outline the plans the Department of Health and HSE have to identify sources of sustainable funding for the Children’s palliative medicine consultant post (IHF funded) and the 8 outreach nurses when the IHF funding ends in 2016; and to confirm that children with terminal illness are entitled to the medical card without means test in the same way as adults.

The HSE and the Irish Hospice Foundation work in very close collaboration in relation to children’s palliative care services and the National Development Committee for children’s palliative care is jointly chaired by both organisations.

This Committee;
• Provides national strategic guidance in relation to children’s palliative care needs
• Makes recommendations in relation to the resourcing of children’s palliative care services.
• Oversees the preparation of development plans for each HSE Region

In support of this work and to ensure streamlined services across the country, a network of Outreach Nurses, Consultant ‘champions’ and Directors of Nursing has been established.

Four Palliative Care Outreach Nurses are already in post and the process of recruiting the remaining 4 is at a very advanced stage, with candidates selected for the 4 posts.

The HSE continues to work with the Irish Hospice Foundation to develop a sustainable model of funding post 2016.

Other priorities for the Committee are
• Developing an appropriate monitoring and evaluation process for the Children’s Outreach programme
• Identifying the respite and home care needs of children with life limiting conditions including the development of a ‘Hospice-at-Home’ service model
• Improving clinical Governance, education and development
• Developing minimum information data sets

Children with terminal illness are entitled to a medical card without means test in the same way as adults. No means test applies to an application by a terminally ill patient and all terminally ill patients will be provided with a medical card number for a period of six months once their medical condition is verified by a GP or a consultant.

The Lancet

In July 2021, Jillian co-authored an article in the world-renowned medical journal “The Lancet”