Ms Fiona Bardon:

Dia dhaoibh. We have all seen the advertising campaign “When stroke strikes, act F.A.S.T.”, but why is it that we must act fast? When a person has a stroke, brain cells are destroyed. Therefore, it can affect them physically, cognitively and emotionally. Some people are left unable to move limbs or have balance or co-ordination issues, while other people’s ability to swallow may be impacted or lost. Some stroke survivors are left with damage to their brain which leads to issues with communication, a personality change, an inability to process information properly or a drastic alteration in their thinking skills. Stroke affects everybody differently and no two recoveries are the same.

I went from being an active, independent 33-year-old to someone who woke up in ICU, could not hold a spoon to feed herself and was not able to string a few words together to form a coherent sentence, and I am one of the lucky ones. I could not understand why people did not know what I was saying as I did not realise that what I was thinking in my head was not coming out of my mouth. The care and support I received in hospital was amazing. Many stroke survivors are discharged into the care of a rehabilitation centre or perhaps a nursing home to continue their recovery. Some of us are discharged home, which in theory sounds amazing. However, in the ten days I spent in St James’s Hospital, I came in contact with doctors, consultants, physiotherapists, speech and language therapists, a dietician, radiographers, an occupational therapist, stroke and epilepsy nurses and the list goes on. I went from being surrounded by medical professionals 24-7 in hospital to nothing. Not one medical expert came to our house following my discharge. At this time there were a huge number of everyday tasks that I could not do for myself. There were no follow-up services for me once I was discharged. There was no one to check on me.

The first time I needed to wash myself, I stood in front of the shower for a full five minutes trying to figure out how to turn it on. I only had to press one button but I had no idea what to do. I had to negotiate a social welfare system that is complicated at the best of times. It is worse when I could not even retain one sentence's worth of information. I had to relearn how to make simple food like toast or a cup of tea. I had to figure out how to tie my shoe laces. I had to work out how I was supposed to get my medication. These are simple everyday tasks but for people with brain injuries every little thing is difficult, confusing and exceptionally tiring.

Of course, my family and friends rowed in as best they could but where was the public health nurse? Where was any community home care team checking in on me? Why was no carer set up to see us through the first few weeks to help with the huge adjustment to be made when a stroke survivor returns home? Where was the counsellor to talk through this life-changing event with me? Where was the speech and language therapist to help me improve and adapt to my communication difficulties? Where was the physiotherapist to get me moving? Where was the phone call to remind me that I had a hospital appointment and to see if I could make it to hospital given that I was no longer able to drive.

I was put on a waiting list to be assessed by the National Rehabilitation Hospital and in the interim I had appointments with my neurological consultants. Only for a fantastic GP, I had nobody else looking out for me. It took from August 2019 until February 2020 to get an appointment with the National Rehabilitation Hospital. Typically, stroke survivors make the greatest improvement in the first few months following their stroke; it was five and a half months before I was even assessed. I am not blaming anyone. It is clear that our health service is understaffed, under-resourced and underfunded.

I am not alone in my story. In my Irish Heart Foundation young stroke survivors group there is a woman who has yet to receive any follow-up 14 months after her stroke. A gentleman who had four further strokes and has now lost movement in his right side was refused an electric wheelchair as he made three attempts to end his life. Ironically, the reason he attempted to end his life was because he had received no support and was confined to his bed. The consequence of this was the very reason he was refused an electric wheelchair. After unsuccessful lobbying of politicians and the health board for several years, he eventually raised enough funds to buy his own wheelchair. I am relieved to report it arrived a few weeks back and his new lease of life is indescribable. As another member put it: “Once you leave the hospital you are just left to figure it out by yourself. It’s impossible to access more services unless you have deep pockets”.

I was affected neurologically. I can have trouble communicating, remembering words, and remembering the meanings of words. I find it very difficult to organise myself. I have issues with my memory and find it hard to read and retain pieces of information anymore. It is incredibly hard for me to multitask. Silly things like when I am walking down the street and it starts to rain, I have to stop to zip up my coat as I cannot walk and zip it up. I still have trouble putting keys in locks.

I am a primary school teacher by profession. Although it has been two years, I am still not recovered enough to return to work full-time. I am in a catch-22 situation where I could possibly return one or two mornings a week and slowly build back up to full-time, but the Department of Education will not accommodate me. There are a huge number of stroke survivors whose work places cannot, or will not, adapt sufficiently to allow them to return to work. These are people who could be back in work, paying taxes and moving forward in their lives, who have the right to return to work, but are not being given sufficient support and opportunity to do so.

Fourteen months after my stroke I discovered the Life After Stroke Irish Heart Foundation Facebook page and everything changed for me. In my young stroke survivors support group there are people my age and younger who I can relate to. We can do exercise classes online daily and can join activities such as music, bingo or quizzes. Classes are run to promote brain activity through poetry, art and cooking. Talks are given by professionals on fatigue, the importance of diet and exercise, mindfulness, adapting to our new lives, etc. I have been able to speak to a counsellor. I have access to a stroke nurse. I can call my stroke co-ordinator at any time and families of stroke survivors also have support. The Irish Heart Foundation stroke check-in service provides practical supports and assists stroke survivors living as well as possible at home. Why can something similar not be run by the HSE? Why are these types of services not a given for all stroke survivors upon discharge from hospital?

Gabhaim buíochas leis an gcoiste don deis a chaint inniu.