THE LEAD PATIENT representative on a working group tasked with developing a national neuro-rehabilitation strategy almost a decade ago has criticised the lack of investment in implementing the plan since then.
Neuro-rehabilitation services refer to the range of therapies and supports required by people living with progressive or sudden onset neurological conditions such as stroke, multiple sclerosis (MS), Parkinson’s disease, and acquired brain injury.
In 2010 Alexis Donnelly, a computer science lecturer in Trinity College and patient with MS, was appointed as the lead patient representative on a Department of Health/HSE working group which was set up to develop the strategy.
After several meetings between stakeholders, the strategy was published in late 2011.
The recommendations included:
Ireland was in the midst of an economic recession when the strategy was compiled, but Alexis said he was assured the recommendations would be implemented – albeit at a slower pace. It has now been over eight years since the document was published and Alexis said very little has changed since then.
Alexis said the lack of progress made since 2011 is “very frustrating”, noting that he and other patients may have seen less of a deterioration in their conditions in the intervening years if better support had been available to them.
“I was given the impression that it would happen, that is might be slow but they could see the economic sense in it. It would save the country money in the long run, but nothing was put into it.
“It’s like banging your head of a stone wall, that’s the way it feels,” he told TheJournal.ie.
As well as “running up bills for the future”, Alexis said the current approach is “destroying lives, destroying families – kids who could be out playing sport are having to look after sibling or parent”.
It would save the country money in the long run because people wouldn’t get worse, less pressure would be put on families – caring is the great unpaid profession.
The Neurological Alliance of Ireland (NAI), one of the groups pushing for the implementation of the strategy, is also frustrated at the delay.
“The strategy was published in December 2011, nearly a decade later there has been no progress on implementing the strategy,” a spokesperson said.
No investment commitment
A three-year implementation plan for the strategy was released by Health Minister Simon Harris in February 2019, following years of lobbying by patient organisations.
However, the NAI spokesperson said the plan “came with no commitment to investment” and little has happened since then.
“There is only one national inpatient centre, the National Rehabilitation Hospital (NRH) in Dún Laoghaire, meaning that Ireland has only half the rehabilitation beds needed for a population of its size and all are concentrated in the Dublin area.
“Community neuro-rehabilitation teams are required nationwide to cater for patients discharged from hospital or living with neurological disability in the community,” the spokesperson said.
They added that waiting lists for the NRH “frequently exceed 300 patients at any one time with waiting periods of up to six months when the recovery window is at its optimum within the first two years for conditions such as acquired brain injury”.
The spokesperson said most patients who need this type of specialist care are discharged with no access to rehabilitation.
‘Massive impact’
Alexis (59) was diagnosed with MS in 1991, when he was 31 years old.
He knows the benefits of neuro-rehabilitation first-hand, but had to go abroad to get it. A friend of his who lives in Italy and also has MS told him about a clinic he attended for two to three weeks at a time to receive treatment and advice from physiotherapists and occupational therapists.
“They would recommend exercises and stretches, and give advice about adaptation of a person’s home or office,” Alexis explained. He decided to go to a clinic in Tenerife “as an experience” but got a lot more out of it than he expected, and returned several times.
“It was like a light went off in my head, or a light went on in my head.
It made a massive impact on me from both a physical and a psychological point of view. Psychologically, the reaction was that I can begin to take control of my life rather than the disease taking control of my life.
“If you have MS your life isn’t the same but it’s not a total loss of control, rehab helps with that – you’ve a much better idea of your capabilities and learn ways of going around obstacles,” Alexis said.
On one trip, Alexis made such progress he was able to walk unaided. “I’d given up [on walking again] and there I was walking 20 metres without assistance,” he noted.
“It hasn’t stayed that way, the disease has progressed since then, but it was a massive achievement.”
Many of the patients at the clinic in Tenerife were Swedish, sent there by the Swedish health service – an opportunity he would love to see given to Irish patients.
“I would like to see this available in Ireland, it would solve many problems at an individual and family level,” Alexis said, adding that the supports in place for people with MS and other neurological conditions have been “whittled away” over the years.
Alexis wants to see neuro-rehabilitation services available all over Ireland, noting: “I would like to see the effect that it had on me being replicated.”
His condition has deteriorated in recent years but he is still working part-time at Trinity and advocating for patients.
“I’m totally quadriplegic but I’m an associate professor at Trinity, not full-time anymore because of my energy levels, but I’m still active,” he stated.
‘Chewing away at the insulation’
MS is a progressive, neurological condition of the brain and spinal cord. MS symptoms include impaired mobility and vision, severe fatigue and cognitive difficulties. There is no known cause or cure for the condition.
More than 9,000 people in Ireland have the condition and approximately three times as many women than men are diagnosed with MS.
There are three main types of MS – relapsing-remitting, primary progressive and secondary progressive. The first type is the most common and, as the name suggests, involves relapses and remissions.
Alexis skipped this stage and his condition has become progressively worse over the years.
“They don’t know fully what’s going on, pathologically, from a biological point of view. Some wild inflammation is going on – the immune system is attacking the insulating sheath on your nerves.
“So, if you imagine an electrical wire and something is chewing away at the insulation and the signal is going to be attenuated and eventually the conductor will also cut so the brain may well tell the leg to move, but the leg ain’t gonna move,” he explained.
International research
As well as providing input from a patient’s perspective to the Irish working group, Alexis has also been involved in international research. He is on the steering committee of the International Progressive MS Alliance – a global collaboration of MS organisations, researchers, clinicians, pharmaceutical companies, and people with progressive MS.
The alliance funds research that aims to identify potential treatment options and improve the lives of people with MS.
Alexis has been involved with the alliance since 2016. “They put out a call for people with MS who understand the way research works and would contribute to the steering committee,” he recalled. Some 200 people applied, about a dozen were interviewed and three people, including Alexis, were chosen.
“I was gobsmacked to be honest. It’s been a real rollercoaster ride.
“I always read a lot about what’s going on [with MS research], I’m also on the MS Ireland research committee. Joining the international alliance was like joining the premiership, it really required me to learn an awful lot,” he told us.
Alexis has enjoyed seeing the breakthroughs being made in research, telling us: “We’re finding that there are effects happening, the research is giving us insights for the future of what we can do…
Researchers in the alliance are finding that the body is fighting back (from MS), there are things happening there that will in time help to reverse the setbacks if you get them early enough.
However, seeing advances being made abroad has also compounded his frustration at the lack of services available in Ireland.
‘Get your act together’
Alexis is angry that so little has been done to help people living with MS or other neurological conditions in recent years, with their health deteriorating as times goes by.
Anger would be part of my reaction. Anger, and a lot of it. But at the same time, I’m very willing to help anybody who will get this show back on the road, it’s something that just has to be done.
Alexis noted that setting up a neuro-rehab program would not only benefit people with MS, but also people who have had strokes, people who have Parkinson’s disease, people who have been in car accidents.
“It could be your granny or your grandad or your uncle or even your cousin – a lot of people are getting strokes when they are younger. They’re using the same gym, the same physios,” he said.
Alexis would like to see “a mini version of the NRH all over the place” so people can easily access the care they need regardless of where they live, adding: “We could put four NRHs in the country.”
His message for the HSE and Department of Health is simple: “Get your act together. This is a sensible thing to do, it would save the country money. It’s not rocket science, by any means.
Having experienced what neuro-rehab can do, the massive difference it can make, I made the effort years ago to draw up this strategy just to see if gather dust on a shelf.
A spokesperson from the HSE acknowledged that there is “a significant gap” between the services needed and those currently in place for people who need neuro-rehab.
The spokesperson said the aim of the Neuro-Rehabilitation Strategy Implementation Framework is to “improve patient outcomes by providing safe, high quality, person centred neuro-rehabilitation at the lowest level of complexity”.
“These services must be developed and integrated across our health system and configured into population-based, managed clinical rehabilitation networks.
We know that there is a significant gap between existing neuro-rehabilitation services and the level of services we should have for our population, particularly with respect to local inpatient neuro-rehabilitation and community based neuro-rehabilitation.
The spokesperson said the 2011 strategy “advocates for the development of services which should be accessible based on clinically-assessed need and not based on diagnosis”.
“People with an acquired brain injury would be included within the recommended scope for any local specialist inpatient neuro-rehabilitation unit, so too could those presenting with other neurological conditions.”
The national steering group reconvened last week after not meeting for a number of months. The spokesperson said the delay in meeting was caused by the retirement of the co-chair and HSE lead for the strategy.
They added: “There is a dedicated programme manager for the managed clinical rehab network demonstrator project which is to provide model/framework for implementation.
“An application for funding of demonstrator is currently being considered and we are hopeful that there will be progress in this area in 2020 which will support national roll out of the Implementation Framework.”
The Department of Health had not replied to a request for comment at the time of publication.
National Brain Awareness Week is taking place from 16 to 22 March. For more information about MS, click here. Further details about the NAI can be read here.
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