Michael McDowell (Independent) | Oireachtas source

I welcome the Minister to the Chamber today and thank her for being present and for making it to this place after all her travels.

This legislation is not some exercise in opportunism, nor is it intended to be part of a party-political blame game or a point-scoring exercise. It is simply a measure to ensure a tragedy which unfolded for very many children and their parents comes to a timely end and that the trail of broken promises, missed targets, disappointment, heartbreak and suffering for so many children and their families arising from the delays in the provision of proper treatment services for scoliosis sufferers should come to an end.

There are a couple of points I should make. First, my colleagues in the Independent Group and I have received overwhelming support, not merely from scoliosis action groups, advocacy groups and parents but also from medical practitioners and specialists, for the proposals in this Bill. Second, not everybody who suffers from scoliosis needs surgical treatment. In fact, only a small minority of them need surgical treatment. It is very important to keep that in mind because it has two consequences. We cannot have a system where the specialists who provide surgical interventions end up having to act as the people to whom parents and children are sent for routine consultations, because the result is that sometimes these specialists have as many as 20 or 30 appointments with children and their parents in a single day.The result of that is they get about ten minutes each. The result of that is that, having spent maybe six months waiting for this appointment, they are told at the end of those six months that their child does not need surgery or a decision will have to be deferred. They wonder whether they are being treated to the standard which is necessary. The solution to that particular problem is this: we need a different pathway for scoliosis sufferers who are not in need of surgical treatment from those who are. They cannot all be bundled onto the same waiting list and treated, interviewed and assessed as though they were candidates for surgery by the people who would carry out that surgery. That is a fundamental point for the future. A wholly different approach has to be taken to scoliosis sufferers.

I am satisfied, from what I have heard, that we need to ring-fence the resources going into scoliosis treatment and the physical resources available to sustain 500 interventions per annum. That involves keeping bed space available in hospitals where treatment is available and not wiping out the programmes for surgical interventions because of surges or seasonal respiratory crises which afflict hospitals. An example where ring-fencing facilities has worked is cystic fibrosis. There was a time when cystic fibrosis patients were thrown in with everybody else and treated as if they could join the queue. If other people were in with a broken leg, a heart condition, pneumonia or whatever, then cystic fibrosis sufferers' treatment was postponed or bed facilities were not available for them. The HSE probably does not like the idea of ring-fencing, just as the Department of Finance hates the idea of hypothecated or ring-fenced funds for particular purposes. I know it wants all its money, in theory, to be fungible and capable of being moved this way or that as the exigencies of service require. Normally, I would be sympathetic to such a view and conscious of the fact that, among people suffering from critical, long-term or developing illnesses, we cannot in principle have a hierarchy of suffering. Everybody is equally entitled to receive the degree of service appropriate to their condition but the obverse of that coin is this: there must be equality of access to services which are critically needed.

I have a stack of individual testimonies by families who have waited years for their children to receive surgical treatment while the degree of scoliosis, the pain and the damage to other organs increased every year in intensity and while their mobility and their capacity to walk and do the things all kids want to do and all parents want their kids to be able to do was affected. I have a catalogue of the most heart-rending stories.I do not propose to spend Committee Stage of the Bill putting them on the floor of the House for drama's sake because we are not here in the business of competitive sympathy. We are all here in, I hope, a spirit of co-operation and positivity towards addressing the needs of those children, the needs of the family and the needs of the health service to cater for them.

Another point that I want to raise with the Minister in the course of the debate on this legislation, and the necessity for it, is what happened in her Department last year. We were led to believe by her predecessor - I believe he acted in good faith - that he had assigned just over €19 million extra for scoliosis-related treatments. His Department advised him, given he did not think this up himself, that it had every appearance that those funds were dissipated to more general purposes within the HSE’s activities. He went public on that and said he was going to have an inquiry conducted into it. I was surprised to see that an internal audit of the HSE was, in fact, carried out. It presented its report in October, before the general election was held, but the report was not published until after the general election was held. It suggested there was no dissipation or misallocation of the €19 million that the Minister had claimed in public appeared to have been used for other purposes, but that it had all been used for the purposes for which the Department of public expenditure had authorised this increased payment.

When I looked at the report of the internal audit function of the HSE, I noticed that the figure of €19.1 million does not figure there at all. There is a figure in excess of €30 million and a figure in excess of €21 million, but the €19.1 million that the Minister had publicly announced simply does not feature, and the HSE, on an internal basis, gave itself a clean bill of health. I cannot from a distance decide whether the Minister's suspicions, which clearly were shared by the Department because he would never have gone on a solo run by himself, were justified. I am often sceptical about a body conducting an internal review of its own use of allocated resources when it comes up with the proposition that there is “nothing to see here”. I find that slightly worrisome.

I do not want to make a Second Stage speech. The section we are dealing with provides:

The Health Service Executive shall establish and maintain a national treatment service for the timely and effective inpatient and outpatient treatment of scoliosis within the State at such hospitals and other clinics and centres as it may designate for the timely detection, assessment and remedial treatment of scoliosis for all children and adults normally resident in the State.

That is a duty to be imposed upon the HSE to establish and maintain this service for timely and effective inpatient treatment. It has to be read in conjunction with the next section, which casts a statutory duty on the HSE to provide and maintain adequate resources for the carrying out of the service under section 1, a statutory duty which, if there is a failure, could give rise to legal remedies. The combination of these two sections is intended - I make no secret of it - to give enforceable rights to people who are left waiting for years for treatment that should be provided in a more timely manner and which is not, for one reason or another, being so provided.

There is a last point that I want to make. Section 1 deals with a service within the State but it is not the complete story of the Bill.Section 4 provides that "the Health Service Executive, where [it feels it necessary to] comply with its duty under section 1 to individual patients, [can arrange] for the provision of such services at hospitals, clinics and centres outside the State where for practical reasons the timely and urgent provision of such services at the standard referred to in section 2 so requires". Most children and most families do not really care where they receive their treatment when it is badly needed.

However, let us make this point as well. The cost of 16 people receiving treatment at Great Ormond Street children’s hospital or a centre in New York was more than €5 million. That is a very significant sum. It is €500,000 a go. I have no doubt that is justified because this would not be done lightly, or it would not be done if an alternative service was available in sufficient time in the State. The point I am making is that if we are going to do it, either through the National Treatment Purchase Fund - which I do not think is involved very much in this arrangement; I think it is done on a slightly different and less formal basis – one way or another, it will cost money to do justice to those children and their families. Unless a specialist skill that is unavailable in Ireland can be attained abroad, the expenditure involved should ideally be made in Ireland and the funds necessary to achieve it should be provided by the HSE.

This Bill should never have been necessary. I know that the electoral cycle made it difficult for the Government to decide on the principle of the legislation in the run-up to the recent election because in May and June of last year, we did not know whether we were in an immediate electoral cycle and whether the election would be held at this time this year or at some intermediate date. However, this is not about electioneering. This is a commitment made by the supporters of this legislation and the Members of this House, who unanimously supported it. Nobody opposed it on the previous occasion. This is the occasion on which we can actually put in place measures whose cumulative effect will be to bring justice and healing, prevent suffering to a group of people who have suffered too long, and ensure that those who need those services and develop those conditions are adequately dealt with by the Health Service Executive in Ireland.