Opinion: ‘Brain injury means recovery has become my life, I face new challenges every day’

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Dr Rosie Mangan’s life changed after an accident in 2019. She says the postcode lottery system for neurology rehabilitation services must change.

MY LIFE COMPLETELY changed when I was in a road traffic accident while on a research expedition to Brazil in 2019. I suffered a severe traumatic brain injury.

The first hurdle I faced was the simple act of survival. I was put into a medically induced coma, sedated with strong drugs to keep me asleep.

I was repatriated back to Ireland when an inpatient neurology service bed became available, a month after my accident. When I awoke from my coma, I was faced with new challenges. The most difficult thing for me was just learning to communicate and walk again. Recovery has become my life. 

Saving a patient’s life is only just the beginning. Rehabilitation is the next crucial step. The Covid-19 pandemic arrived when I was starting my neurorehabilitation. The lack of visits during Covid-19 was extremely challenging and overwhelming.

One of the most important factors in a patient’s recovery after neurological injury is the involvement and support of their family. Technology really helped me during Covid-19 in hospital. I regularly video called my family and friends. I listened to audiobooks when I was too tired to read. I used different apps to self-direct my recovery when there was a Covid-19 stoppage of routine hospital therapies.

Investment in recovery

But the pandemic affected my discharge from hospital. There was a suggestion to inappropriately place me, a young brain injury survivor, into a nursing home.

Fortunately, my consultant located an inpatient neurorehabilitation space for me. Getting rehabilitation early was positive for my motivation. I knew I had a long road of recovery ahead and I had my heart set on getting going. 

My own experiences have made me a strong advocate for improving neurological care services in Ireland. To mark the start of Brain Week Awareness Week, the Neurological Alliance of Ireland (NAI), today published a report ‘Neurology Resourcing in Ireland; Five Years On’ based on a survey of clinicians from 12 neurology centres across Ireland.

The survey was conducted between November 2020 and January 2021, in collaboration with the National Clinical Programme in Neurology. When compared to the findings of the last nationwide survey in 2015, there was some progress in addressing regional gaps in consultant staffing but there has been a deterioration in neurological care services.

Multidisciplinary teams are understaffed in all 12 neurology centres and are entirely unavailable in some regions. Neurological clinical nurse specialists represent only 44% of what is required. 

In the last five years, the number of people on out-patient department waiting lists for a first-time appointment to see a neurologist has increased by 40 per cent. There are now 22,649 people waiting for an appointment compared to 13,529 in 2015. 

In short, neurological care services in Ireland are understaffed and underfunded to provide for the 800,000 people in this country living with a neurological condition. The lack of commitment to improve services continues to impact significantly on outcomes for neurology patients.

The postcode lottery

Living in Offaly, I am fortunate to have excellent HSE Midlands community services and an Acquired Brain Injury Ireland unit in Mountbolus, Tullamore.

I cannot stress the importance of community rehabilitation enough. Brain injury is permanent with new challenges every day. Rehabilitation should be every day too. 

Unfortunately, other areas in Ireland do not have the same services we have in Offaly. I have spoken to brain injury survivors around Ireland and they express disappointment and frustration at the lack of services available to them locally. For example, in Cork, Limerick and Galway – three of our largest cities – there is limited access to Community Neurorehabilitation Services and very limited Post-Acute Inpatient Neurorehabilitation Services. 

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The NAI report found neurorehabilitation services have deteriorated further since poor levels of access were reported in 2015. Ireland has fewer than half the number of inpatient rehabilitation beds required for the population and a dearth of long-term community supports at every level from community multidisciplinary teams to day services, vocational supports and transitional and long-term residential facilities.

Two years on from the publication of the Implementation Framework and a decade since the Neurorehabilitation Strategy was first launched in December 2011, only two additional community teams have been partially funded and there has been no new investment to develop community supports.

Despite the redevelopment of the National Rehabilitation Hospital, fewer than 30 new neurorehabilitation beds have been brought into the system. All of this is worsened by the curtailment of existing services due to Covid-19 restrictions.

Like everyone, I am counting the days until I can get vaccinated against Covid-19. As a result of my brain injury, I suffer with respiratory weakness. Last week, CEO of the HSE Paul Reid, announced people who have neurological issues and disabilities would start getting vaccines and that is a relief. 

But the Government needs to do more. It should mark Brain Awareness Week by responding to the NAI report with a serious commitment to address the critical understaffing and underfunding of neurological care services in Ireland. This would seriously help to improve outcomes for neurological patients and improve the level of community rehabilitation. 

Dr Rosie Mangan is a Postdoctoral Researcher in Environmental Sciences at the University of Stirling in Scotland. She sustained a brain haemorrhage in a car crash while on a field trip abroad in Brazil in 2019. She underwent extensive rehabilitation and has become a committed advocate for access to neurorehabilitation services. 

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