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The vast majority of people with serious neurological conditions are not receiving the rehabilitation services they need to rebuild their lives, a nationwide survey carried out by the Neurological Alliance of Ireland (NAI), the umbrella organisation for the country’s neurological sector, has found.
The study of people living with the effects of conditions such as acquired brain injury, stroke, multiple sclerosis, Parkinson’s disease and motor neurone disease revealed that 71% couldn’t access any neuropsychology services at all, whilst for 68% physiotherapy and speech and language therapy were either inadequate or not available.
In addition:
· 80% couldn’t access adequate residential or day services
· 78% could not get proper counselling services
· More than half had no access at all to training or employment support
· Over three-quarters couldn’t get enough information or advice on how to access services or what their benefit entitlements were.
· 76% couldn’t access adequate occupational therapy services
The publication of the survey coincided with the launch in Dublin’s Mansion House of the NAI’s Neurorehabilitation Manifesto which calls for the urgent implementation of Government plans to develop services nationally and to protect voluntary providers of vital neurological services from further funding cuts.
NAI chairman Chris Macey said that although it is estimated that around 150,000 out of some 700,000 people living with neurological conditions in Ireland require ongoing rehabilitation, services across large swathes of the country are fragmented, patchy, or non-existent.
“This study highlights the scandalous absence of services for people whose lives have been saved, but whose quality of life is being virtually ignored after they leave hospital.
“Being in a car crash, having a stroke, or being diagnosed with MS can have a devastating impact both physically and psychologically. Our health service can’t just exist to patch patients up and then wash its hands of them. We have to help people get back as much of their lives as possible after they are struck by neurological conditions.”
The biggest deficits recorded in the survey were in neuropsychology services which each year are required by around 50,000 people with neurological conditions nationwide. However, just 20 neuropsychologists are currently in post for the entire country when the number required is around three times that.
Principal Clinical Neuropsychologist at Beaumont Hospital, Dr Niall Pender, said that patients missing out on vital psychological treatment “are suffering unnecessarily and this will have a serious impact on their functional ability, employment possibilities and education".
“Neuropsychologists work across the lifespan and work with children and families following brain injury and return to school. They work in facilitating diagnostics and measuring cognitive changes following injuries and illnesses. In later life they are a necessary part of a memory clinic in assisting the diagnosis of dementia. There are other specialist roles in the pre-surgical assessment of epilepsy and in the assessment of mental capacity,” he added.
Mr Macey said that neurorehabilitation services in Ireland are recognised to be the worst in Europe. And even if the improvements being sought were implemented, they would still be worse than those in any other European country with the exception of the UK.
“For example, we currently have 7 consultants to serve specialist neurorehabilitation needs across the whole country. But even if we had 50 we would still have the lowest number per capita in Europe with the exception of the UK. And if it increased to 150, we would still be behind countries like Estonia, Latvia, Czech Republic, Croatia and Serbia.
“In other words, what we are really aspiring to is not to have services that any country could be proud of, or even services that are mediocre – but to be the second worst country in Europe for neurorehabilitation.
NAI Development Manager Mags Rogers added that it was important to understand that six successive years of HSE cuts to disability funded not for profit organisations continue to have a disproportionate impact on people with neurological conditions. “Ireland relies on these not for profit groups to provide specialised neurological care and rehabilitation. We just don’t have the framework of State services that other countries take for granted and these organisations have stepped in to meet the huge unmet need.”
She said that despite the fact that the Government’s neurorehabilitation policy accepts service improvements would be cost effective, to date it has refused to make even minimal funding available to implement necessary reorganisation and streamlining of existing services.
The Neurological Alliance of Ireland launched their neurorehabilitation manifesto in the Mansion House Dublin on Wednesday 20th Feb, calling for the implementation of the national rehabilitation strategy. The manifesto also highlighted the need to protect not for profit organisations from ongoing cuts, given that these are often the only source of services for people with neurological conditions and their families. NAI also published the findings of their nationwide survey on access to neurorehabilitation, showing that a high percentage of respondents could not access vital supports such as counselling, occupational therapy, physiotherapy and speech and language therapy.
You can download the manifesto and survey results, and find out more about how to support the NAI campaign for neurorehabilitation at http://www.nai.ie/go/campaign_centre/nai_campaigns/neuro-rehabilitation”
