"My Stroke Experience"

I had a stroke in January 2023. I was admitted to Ninewells Hospital in Dundee. My experience there was not as expected. During the 3 weeks and 2 days they moved me wards 5 times. I was unable to talk because I have aphasia and apraxia of speech. My sister wrote in an information booklet provided by the hospital with my name, family members, my hobbies and my personality. Many of the staff disregarded this booklet as they were too busy; only two nurses took the time to read this and understand how to help me.

During my first week, a family member noticed that my IV drip was leaking on the floor and had to ask a nurse to fix this; this happened twice. In my first week there, someone buzzed for help and they thought it was me, she was screaming my name saying that she would be with my soon, the head nurse came over to me and asked if I was okay, she noticed that I did not have a buzzer as it had been taken away. After that the head nurse had a word with the nurse who shouted at me but they never gave me another buzzer during that week. I was moved wards and received a communication book and a whiteboard, I was unable to use this effectively at the time because I was paralysed down my right side. Luckily I was able to walk but felt as if I was falling. When I wrote this on my whiteboard a staff member told me not to be silly.

Later down the line a doctor discovered that my blood pressure was falling dramatically. I was moved to the next ward where speech and language were very helpful and gave me an iPad that spoke for me. The physios and porters were also very good. I was not able to eat with the utensils provided and had to ask every meal for a teaspoon as the stroke had caused my lip to drop. I used a mirror to eat because I could not feel the right Side of my face. I was moved again to another ward and during meal time I asked for a small spoon and was refused, luckily a nurse from a previous ward came to check on me, she wondered why I was not eating and why I didn't have a small spoon. It was only then that she able to advocate for me and she got a member of staff to give me one.

A few times when I came back from my therapy there was no lunch for me. My sister spoke to staff in order to get me something to eat but staff member never came back. On my final day at Ninewells a male nurse asked me why I was not at home. This upset me as I could not explain to him. A doctor asked me why I was upset and let me type out why I wasn't home yet and she knew herself this should not have happened as it was not his place to ask me.

I am grateful for the members of staff who took the time to help me spread rolls and open things for me when I was unable to, I am very grateful for the head nurse and the nurses who took time for me and helped me shower.

After I was discharged there was no proper discussion regarding my discharge from hospital with my family. I had to wait five and a half months to see the stroke team who only met with me once. I have still not seen a neurologist despite being referred in March 2023.

There should be a proper protocol put in place for a person being discharged from hospital. Some examples include: the family being talked to, the GP being informed, different services being informed such as occupational therapy/physio therapy, speech and language therapy (SALT), the stroke team, home help/care. They should have checked who I was going home with/to, financial information and done a medicine check.

The OT never made a proper assessment of my needs and what I was capable of. They called my sister in April, three months after my stroke to say they were worried about me. Me and my family are upset about this and cannot understand why more help is not given at the beginning.

Nobody has taken any responsibility and no one has apologised for the lack of care I was given. It should not be assumed that a person has family and friends that will do things for them. The OT assistant that visited me seemed to me inexperienced, she did not show great care and pulled a chair away from me when I was going to sit down and hurt my hand.

It was three months until I got my blood pressure checked from the district nurse from my health centre, this was when they found out that my blood pressure varied whren I was sitting and standing which caused my dizziness and the feeling of falling. This was when I began taking medication at a different time of day.

Seven months after my stroke I am now off my blood pressure medication and have so much more energy and am now able to walk a bit further everyday. With the help of speech and language coming to visit three times a week I have learned how to talk again, I am so grateful.

SALT helped me write out a list for my family to let them know the things that I am unable to do. SALT helped my sister to fill out forms and my care manager helped me to amend these forms appropriately. Without my family and friends to help me I do not know what position I would be in just now, and I do not know if I would have received the support that I needed.