Irish neurological services facing ‘barriers at every point’

Although more than 800,000 Irish people are living with neurological conditions and despite the fact that Ireland is a world leader in brain research, this country continues to have among the poorest access to services across Europe. Patients' ability to get diagnoses and help with rehabilitation of neurological conditions leaves a lot to be desired, according to the Neurological Alliance of Ireland, the advocacy umbrella for neurological charities.

In this context, the patient journey to diagnosis and treatment in this country is significantly hampered by insufficient staff and inadequate resources warns Prof Orla Hardiman, professor of neurology at Trinity College Dublin and consultant neurologist at Beaumont Hospital.

“What is happening at the moment is that there are a number of problems in terms of the patient’s journey; there are many barriers,” Prof Hardiman says. “The first barrier is the existence of very long waiting lists to see a neurologist. There are not enough neurologists in the country to have an efficient diagnostic process,” she says, pointing out that in some regions patients can wait for up to two years for an appointment. “There are parts of Ireland, for example the northwest, the southeast and the southwest where there are simply not enough neurologists. We need to build the neurologist service to reduce our waiting list in under-resourced parts of the country.”

Once a person has managed to see a neurologist, the next problem is having tests carried out. “It is very difficult, in some parts of the country, to access diagnostic tests, for example public MRIs, so there will be waiting lists for imaging,” she says, adding that a shortage of neurophysiologists – doctors who specialise in the testing of brainwave activity and nerve, brain, spine and muscle function – is resulting in “a massive delay” in diagnoses.

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“Access to MRIs and access to neurophysiologists is a problem. There is not, for example, a full-time neurophysiologist outside Cork or Dublin. This is a huge problem, and even in Cork and Dublin there is a shortage.”

Another barrier for patients was the scarcity of adequately staffed, dedicated neurology hubs. "We should have centres and hubs of neurology with four or five neurologists working together – or at least not less than three – but in parts of Ireland that is not the case. We should have delivery of neurological care out of neurological hubs with diagnostic tests and experts, and good care in the community. We need to expand the number of neurology hubs in the country," she says. In the sprawling region covered by counties Sligo, Mayo, Donegal, parts of Roscommon and Leitrim there are only two neurologists.

“This means resources are very limited in terms of diagnosis,” she says, adding that that region was “very poorly resourced” and needed more neurologists and investment into the development of a hub.

Meanwhile, Limerick was similarly poorly staffed, she says. The region has very good neurologists with strong expertise linked to the University of Limerick, but there were only two of them, she says. In the HSE’s southeast region, which covers counties Kilkenny, Carlow and Waterford, just two neurologists served what Prof Hardiman described as “a very large area, [with] no infrastructure in terms of no neurology hub, very long waiting lists and not enough cover”.

Significant investment was badly needed, she said, adding that while Dublin and Cork were generally better served, here too the service was hampered by “major gaps and long waiting lists”.

“If you are from Donegal or Kilkenny or west Clare your expectation of accessing high quality neurological care is limited by the absence of infrastructure. The neurologists are very good but it’s not healthy for either them or the patients that they are so under resourced – there are simply not enough of them.

“They are covering very wide geographical areas and there is a very high risk of burnout. There are hospitals where we have only one neurologist for example and that is not a good idea. In order to build services in a coherent, evidence-based and quality manner we should not have one neurologist in any hospital.”

The Neurological Alliance of Ireland's Love Your Brainawareness campaign is being launched to coincide with National Brain Awareness Week, March 16th to 22nd. The alliance will be using Brain Awareness Week to highlight the failure to deliver any new neurorehabilitation services almost a decade on from the publication of a national strategy for the area. The group will also be highlighting the high cost for neurological patients who are paying out of their own pocket for basic services for their condition.

Another problem, Prof Hardiman warned, was the lack of multidisciplinary teams. “Once a diagnosis has been made there needs to be a good team in place, which has experts with a range of specialities, such as physiotherapists, speech and language therapists and psychologists. We recognise that much of the delivery of care in neurology involves specialist nurses and nurse practitioners, so there is a very strong case made for building up a range of nurse specialists.”

While there was a good network of epilepsy nurses, she said, such support was lacking in other areas such as multiple sclerosis, despite the fact, Prof Hardiman pointed out, that specialist nurses can make a “huge difference” to the patient journey.

“They can troubleshoot many symptoms which otherwise could require a visit to a neurology clinic. In Beaumont, we have two specialist MS nurses who have worked with us for a long time, but in parts of the country, such as Sligo, we have no specialist MS nurses at all.

"A well-run service needs specialist nursing care built into each disease area that could provide care. In Beaumont, for example, we have three specialist nurses who look after motor neurone disease patients – in Scotland they'd have 17 nurses to look after the same number of patients."

Another area that needed to be addressed was the establishment of a clear pathway along which patients could be referred for integration into supports provided by the voluntary sector, she said, adding that there needed to be better co-ordination between the health service and the supports provided by voluntary organisations.

“At every point along the patient journey there are limitations and barriers. We know what those are and we have built a very strong evidence-based plan to address these barriers which is completely and entirely consistent with Sláintecare and very cost-effective.

“The longer-term benefit would be an enormous cost saving if we delivered this model in the diagnosis and treatment of motor neurone disease for example.

“It would be much more efficient than the piecemeal, scatter-gun approach that is in operation at the moment,” she says, adding that in the area of motor neurone disease for example, an efficient, fully integrated and effective national service would cost just €800,000 a year.