Neurorehab wake up call

Longtime MS Ireland supporter and advocate Alexis Donnelly had this letter published in the Irish Times this week. MS Ireland is working closely with the Neurological Alliance of Ireland (NAI) to ensure that the National Neurorehabilitation Strategy, which was published in 2011, is implemented as a matter of urgency.

A transcript of the letter is below.

Sir, – Patients requiring neuro-rehabilitation services continue to be poorly served by existing provision in the community. Where such services do exist, repeated cutbacks have whittled them away near to (and beyond) the threshold of effectiveness.

I am under 65 and require regular neuro-rehabilitation to maximise my functioning and continued employment despite several decades of multiple sclerosis. I have no idea when I will get access to these services again. With a modest amount of appropriate help, I can continue to work and enjoy a social life. I want to do so, but the modest amount of help I need is being steadily withdrawn.

There are roughly 700,000 other patients in need of neuro-rehabilitation services in this country. The most recent survey (2014) by the Neurological Association of Ireland revealed that 34 per cent of respondents had increased difficulty accessing physiotherapy, with 14 per cent unable to. The figures for speech and language therapy, occupational therapy and psychology were similar. Meanwhile, related services are being cut back – 43 per cent of respondents had their medical cards revoked, 83 per cent had been affected by escalating drug costs, 70 per cent had to fight for access to respite care and 25 per cent had no access, while 64 per cent had experienced cuts to their homecare package.

The HSE’s own 2011 report (Policy and Strategy for the Provision of Neuro-rehabilitation Services in Ireland) sketches how such services might be provided. But it has been largely ignored.

In the long run Ireland is likely to save money by providing the services in these reports due to the continuing cost of the medical complications of not providing the services. Also, a recent study on a potential early discharge service for stroke patients published by the Irish Heart Foundation (Towards Earlier Discharge, September 2014, and carried out by the ESRI and the Royal College of Surgeons in Ireland) estimates an overall saving of up to €7 million nationally in the first year post-stroke if the service were provided.

Failure to provide these rehabilitation services, for patients of all ages, hurts patients, their families and ultimately it hurts us all.

Planning these services will require careful attention to their real “outputs” before someone is discharged. Are patients functioning as well as they possibly can? Are they happy with the proposed arrangements? Are they capable of any employment? Are appropriate community services available? Are financial burdens on the family and on the taxpayer minimised? These are deceptively simple questions with complicated answers. Patients have a firm, personal (if non-technical) grasp of the implications for themselves – especially the implications unnoticed (or ignored) by others. All stakeholders – citizens, medical staff, healthcare planners and providers, Government and patients – need to listen to each other.

We have known for several years that the savings would outweigh the costs of these rehabilitation services. Yet, existing services have been cut, not developed. The time for debate is over. It is time to get moving.

>> Read the letter on the Irish Times website (19/01/15)

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