Hidden sufferers of neurological illness
Sir, – Neurological disorders and diseases affect almost 800,000 of our population, with huge numbers of new head injuries, strokes and neurodegenerative conditions such as Parkinson’s, Alzheimer’s, Huntington’s and motor neurone disease diagnosed each year.
Neurological disorders and diseases result in significant daily burdens for the person and the family alike. The patients and their families are often ignored and overlooked by services and face an immense challenge to obtain services and treatments. Many patients are not even sure about the availability and need for specific treatments. Patients do not have access to standard country-wide services from injury and diagnosis, through to treatment options and long-term care.
Our services are haphazard, poorly resourced and often heavily supported by the underfunded charitable sector or unpaid caregivers. Such people are often silent and hidden due to the burden imposed by their motor, cognitive and emotional difficulties. Very few, if any, have the time and ability to advocate or campaign for themselves. Unpaid family caregivers often spend most of their time and energy caregiving, so they are unable fight for their relative’s needs.
Despite many campaigns to highlight this frankly unconscionable absence of services, very few developments have been made.
People with neurological problems and acquired brain injury frequently do not receive the necessary treatment and care at the correct time in their recovery, are losing employment, failing in education and becoming socially isolated.
International data tells us that almost 50 per cent of rough sleepers and homeless people have had an acquired brain injury before becoming homeless.
While the services that do exist give world-class treatment, rehabilitation and care, in Ireland we have limited specialist staff, and complex, challenging systems for people with neurological disorders to navigate. The personal, financial and societal burden associated with neurological illness is enormous and set to rise.
We need to provide timely, accessible and appropriate treatments for our vulnerable citizens but access to specialist care and rehabilitation is extremely limited.
I have worked as a clinical neuropsychologist with such people and their families for over 20 years and, despite enormous developments in diagnosis, treatment and care over this time, I have seen few, if any, tangible developments in service planning and care pathways, despite numerous national reports and recommendations. I continue to hear stories of poor service provision, confusion regarding treatment options, lack of care and access to services determined by location rather than need. Given our ageing population, improvements in medical and diagnostic care, and the societal challenges we face, let us try to provide some support and care for these hidden sufferers before we face another national crisis. – Yours, etc,
Dr NIALL PENDER,