Submission to the Office of the Ombudsman on the draft investigation report into inequities in the administration of the Long Term Illness Scheme
1. Clinical Judgment
As the Ombudsman is aware, the HSE has been working actively for over a year to end the disparity with regard to ADHD in the context of the LTI Scheme in Ireland, which is one manifestation of an on-going debate on the clinical nature of ADHD. The NICE Guidelines on ADHD (September 2008) point out that the diagnosis of ADHD is difficult, and somewhat controversial, for a number of reasons. It is to be noted that there has been an increase in the recognition and treatment of children with ADHD and that high prevalence rates have been reported in some studies. This gives rise to questions given the differing criteria applied to determine the diagnosis. The authors conclude that, on the basis of current evidence, ADHD is best conceptualised as the extreme of a continuous trait that is distributed throughout the population; the distinction from normality being made by the presence of high levels of ADHD symptoms when they are accompanied by significant impairments. This highlighted the importance of defining what amounts to a significant impairment and ensuring that impairment is fully evaluated when applying the diagnostic criteria, as set out in NICE guidelines.
The HSE made clear in its letter of 24 January 2012 and, most recently, in its submission of 14 November 2012 that agreement on the use of diagnostic classification systems continues to prove problematic internationally. Thus, the Ombudsman’s Office is aware that the disparity is in fact explained by clinical decisions, taken by clinicians working as officers of the HSE, which were based on recognised, but differing, diagnostic classification systems. The draft report suggests that the issue is a simple administrative one. However, against the background of the ongoing debate on the clinical nature of ADHD, it is misleading to suggest that “local rules” (or varying administrative practice) have been employed for a national scheme.
Applications under the LTI Scheme are considered in two steps: diagnosis and approval of products. Medical Officers are clinicians; as such, the organisation expects them to carry out their work as professionals and they can legitimately expect to exercise clinical autonomy. This reasonably extends to their choice of internationally accepted diagnostic classification system. The fact that clinicians in the HSE elect to rely on one or other of two current systems is an inherent part of their clinical decision-making. Practice is not arbitrary; Medical Officers were consistent in their use of classification schemes, which formed a legitimate basis for their decision-making. The disparity arose because clinicians’ choice of diagnostic scheme was not consistent across the country. It is the HSE’s view that this draft report and its findings could be considered as straying beyond the Ombudsman’s proper remit, in that it consistently employs the terms “administrators” to denote clinical decision-makers and questions the exercise of clinical judgement in connection with the diagnosis or illness or the care or treatment of a patient (SI No 332 of 1984).
2. Interpretation of mental illness
In April 2013, the Department of Health (DoH) reiterated its position as relayed to the Ombudsman by the HSE in July of last year, i.e. that it continues to review the LTI Scheme and is not yet in a position to give a timescale for a Government decision. With regard to LTI policy, the Department has stated that is of the view that the question of whether ADHD should be considered a mental illness for the purposes of the LTI Scheme is best resolved in the context of its overall review.
3. Individual case
The report states that an LTI book was given on a “good will” basis and that “there is no provision in the scheme for issuing an LTI card on such a basis”. The HSE’s letter of 24 February 2012 clearly states that the basis for the decision was two-fold: long delay and reasonable expectation. It further states that this would “not serve as a precedent for other applicants until the wider issues in relation to clinical classification as described above are resolved”. While the letter of 29 March 2012 to Ms Kelly did not approve retrospective payment, it is inaccurate to say simply that the HSE has refused to reimburse costs retrospectively in this case, as this letter does not constitute the HSE’s response to the Ombudsman’s letter of 26 March. The report omits to mention that the Ombudsman’s request for retrospection, dated 26 March 2012, was addressed by the HSE in its letter of 9 May 2012, and at a meeting the following day, to the effect that, while it was not possible to conclude that case in isolation pending a DoH policy decision, the HSE would “endeavour to provide a full response for Ms Kelly as quickly as possible”. On 27 July 2012, the HSE provided a comprehensive update and concluded that “in these circumstances” it was “not yet in a position to consider a full response” in the individual case. In the circumstances, it is difficult to see what further response the HSE could give to the Ombudsman’s letter of 4 January 2013 which, by the way, represents the first quantification of the €3,000 suggested.
The HSE rejects any suggestion that the decisions taken locally in the individual case were not soundly based or that staff in HSE South were unaware that LTI was a national scheme. Again, the disparity in Ireland is in fact explained by clinical decisions, taken by clinicians working as officers of the HSE, which were based on recognised, but differing, diagnostic classification systems. It is one more manifestation of an on-going debate on the clinical nature of ADHD. It is unreasonable of the Ombudsman to seek to have one case dealt with in isolation and then, when the HSE acts, to accuse it of treating cases in “manifestly inequitable” or “expedient” fashion. The HSE, on 9 May 2012, emphasised its concern “to ensure a consistent and practicable policy” in relation to LTI eligibility.
4. LTI Scheme
Applications under the LTI Scheme are considered in two steps: diagnosis and approval of products. The section 'confusion about the scheme' is thus itself based on a misunderstanding of the LTI Scheme. To say that reviewing other possible cases at this stage “would be the fairest approach” takes no account of current circumstances, i.e.:
- The DoH has recently informed the HSE that it is not in a position to indicate the outcome of its LTI review at this stage and that final decisions will be a matter for Government. Any HSE decisions should be taken in the context of their policy decision.
- The HSE could not divert financial resources away from current services to cover any LTI arrears without causing other service users to suffer as a consequence.
5. Report Findings
- Regarding 1: Ms Kelly’s child was found to be ineligible, based on the clinical diagnostic classification scheme utilised.
- Regarding 2: A final decision has not been taken regarding retrospection for Ms Kelly.
- Regarding 3: As clinicians’ use of different clinical diagnostic classification schemes lies at the root of the disparity, the HSE does not accept that these clinical matters constitute administrative practice in the first instance. The HSE is of the view that this draft report and its findings could be considered as straying beyond the Ombudsman’s proper remit, in that it questions the exercise of clinical judgement in connection with the diagnosis or illness or the care or treatment of a patient
- Regarding 4: The HSE does not have the authority to impose a matter of policy in place of the DoH or to oblige clinicians to change how they take clinical decisions as part of their professional practice.
6. Interim Operational Policy
With DoH agreement, and after careful consideration, the HSE has decided an interim operational policy to the effect that the issuing of new LTI books to children with ADHD should be suspended. This will end the current disparity in clinical practice pending a formal policy decision from the DoH on the matter.