Sir, – I read with interest the informative article regarding the impact of reconfiguration of the HSE into six regions (“HSE was split into six regions two years ago to deliver better care. Is it working?” August 10th).
Another unintentional consequence of the recent regionalisation of the HSE is the apparent absence of any joined up thinking when it comes to rare conditions that require centralised care. It seems that those with rare conditions will be at the mercy of the priorities of local regional health authorities, disenfranchised in the absence of quality specialist multidisciplinary care, and locked out of clinical trials of potentially beneficial drugs.
The benefits of proper centralised care for rare conditions are exemplified by the motor neuron disease programme. This contrasts starkly with care for Huntington’s disease, a genetic condition affecting around 1,000 people in Ireland.
Prior to reconfiguration, the HSE had convened an expert group to develop an evidenced based pathway for Huntington’s disease. The expert group submitted a fully budgeted plan in which specialist centralised care was recommended. But this was then shelved.
RM Block
Recently a family affected by Huntington’s disease successfully sued the Health Service Executive for the failures of the Irish health services (“National care pathway for Huntington’s disease sufferers ‘urgently needed’, judge says,” July 23rd). The HSE and the relevant hospital apologised. The High Court judge was scathing, and called on the HSE to deliver on the integrated care plan.
The HSE states that the provision of services for those with Huntington’s disease is now the responsibility of each regional health authority. But it is not appropriate to expect regional health authorities to prioritise rare and complex conditions without an overall national plan, and without the necessary funding. Sláintecare calls for the most appropriate treatment as close to home as is feasible. Not all care is feasible in every regional health authority, and failure to put appropriate resources in place for centralised care is a false economy.
The reconfigured HSE seems to be missing the capacity for joined up thinking across the regions. There also seems to be limited administrative resolve to address this problem. Failure to act will not only lead to unnecessary hardship. It will also be costly. Care for complex rare conditions like Huntington’s disease will continue to be fragmented, expensive and reactive rather than proactive, and will unfortunately invite additional costly litigation by distraught and disenfranchised families. This was never the intention of Sláintecare. – Yours, etc,
PROF ORLA HARDIMAN,
Head, Academic Unit of Neurology,
Trinity Biomedical Sciences Institute,
Trinity College Dublin.
