32 first stroke, awful hospital experience discharged with no support or follow up

Hi I am 32, female. With complex health issues. I’m under investigation for mitochondrial diseases. These can cause strokes in young people. I also have severe respiratory illnesses. 

2 weeks ago I was admitted to hospital. I have been getting awful headaches, for a number of months. I saw a neurologist in November 2020. Who noticed issues with my Nero assessment, I couldn’t do most of it she order a urgent MRI. 

That came back fine. Throughout December I was getting dizzy and headaches. I noticed my right eye had turned in.  

Middle of Jan my headaches increased. Nothing helped the extreme Pain. I was exhausted, unable to get out of bed. I felt so unwell. 

Then Friday evening two weeks ago, I had forced myself out of bed for the first time in a week and was going to do a zoom quiz with my friends. My head started around 4 and I took some pain relief. Around 5 I had just finished writing a quiz questions with the telly on and I felt strange. I lost the ability to speak and all my movement on my left side. I couldn’t smile. My heart did this strange beat and I thought I was going to lose consciousness. I called my mum to tell her to come over straight away as I live alone and she is close. I then dialled 999. I said I thought I was having a stroke. My speech was really unclear and it was really hard to get myself understood. I was told due the pandemic ambulance was over two hour wait. I called my friend who is a nurse. The waiting for people to arrive was scary. I called a friend and asked him to speak to me while I waited. 

It was so hard getting me into a car. I couldn’t really walk or speak.  I was trying to stay calm but it was so hard. 

The hospital was really bad. My friend argued that I couldn’t be on my own. I was so upset that I would have refused to go in otherwise. It was more like a field hospital. It was dirty and chaotic. It took a really long time to CT me. There was no coordination. I was seen by a stroke dr.  There was lots of people shouting about being breached (I think they have to respond to strokes in a timely manor). 

I had a CT. the stroke Dr reported that it was fine.  I knew something wasn’t right. I was struggling to swallow on one side and was chocking. Her consultant then rang to say that they thought there was a bleed. 

Due to bleeds not being treated under the stroke team they said I wasn’t for that team.  I was for neurosurgery. Luckily I didn’t need surgery. It also meant I ended up under no appropriate team in the hospital. 

I was on a trolley for 18hrs. I couldn’t use one side, all my things were on my bad side. I was left to get worse. No one explained to me what was going on. 

I was moved to a general surgical ward. Due to there being no beds in the hospital. They were told I was fully self caring and mobile. I wasn’t at all. My speech would be none existent then it would be a bit better. I would get paralysis that would improve then start again but I would never get full movement. My would go ridged and I numb. My mouth would hang open. This perplexed the drs. They didn’t believe me. 

I had no treatment over the weekend. I was left. Nurses were unkind. I was told they didn’t understand my symptoms because the bleed was small. Although the state I was in was significant. They didn’t even know why I was there. One nurse told me I didn’t have a stroke. Another dr would say I did but a bleeding stroke. I was confused. I have a friend who is a medic and he explained more to me than anyone. Luckily I could use my phone to text. Although it was so hard. I’ve made the size of the text huge. 

On the Sunday I had a repeat MRI. I continued to get worse. That night I ended up with paralysis one side and severe weakness on the other. I was chocking the pain in my head was extreme.  The nurses when I pressed my buzzer turned it off and walked away. They didn’t call the dr. No observations were done. My mum had to call the hospital to get a senior nurse to come and suction me. I was left in distress. The next day both sides of my face was droopy. I couldn’t move at all.  My eyes looked closed when open due to droopy lids. I looked so different. 

Nothing really happened on the Monday. The drs who were in charge of my case were general surgeons and I didn’t have a surgical issue. They had no idea about my health issues. On the Tuesday I saw neurology. I got a lot of we don’t know what’s happening. Someone got psych to see me. Who alluded this was psychosomatic. Due to the bleed being small and then not understanding my symptoms. I got no treatment or help. No physio. I was left unable to feed myself and drink. I was referred to SALT but they didn’t see me for a week. I was gaslit by the medical teams. I got no care. My age played a big factor. I was refused help washing as I was told I was young. I should do it myself. 

I had one lot of blood Taken. I’m under a rare disease team for investigation in london and one of the disease progression is stroke in young people. These can present atypically. I felt it was important they spoke to them. They eventually did they suggested they did a repeat MRI. 

On the Thursday morning they told me I was being discharged. Physio had said I was going to be discharged bedbound as I couldn’t walk or sit in a chair more than 4 hrs. That was the first time I had seen anyone. That evening I had the repeated MRI. The surgical dr the next day when I asked about my results. Said there had been a change. A Infarct but it shouldn’t effect my discharge. I asked him to explain what that meant. He wouldn’t and walked away. Neurophysio then came to see me with oT. Started ordering commodes so I could go home. I walked 6 steps with physio. That was my only physio. I sobbed after as I found it so hard. SALT came but I was much better at this point swallowing. Although I had stopped eating. I lost a stone in weight in 7 days. Neurology later came to explain that I had a Lucuar stroke. That they weren’t sure if that had caused the bleed. They explained that I was not mad but unwell. They said it could relate to the rare disease I am being tested for. They said the stroke team would be seeing me. They apologised for the most awful treatment I had received. Later the stroke dr came. She said there needed to be a MDT on the Monday with neurosurgery, neurology, stroke and my london team. To speak about medication or any preventative things. As I had a bleed I can’t have blood thinners. She apologised to me for what had happened.  

Nothing happened over the weekend. Different drs told me I was too unwell for discharge. I had no medical support. Staff didn’t wash me or change my sheets. I was just left in a side room. My friend was allowed up who’s the nurse and she washed, changed my clothes and fed me. Monday a different dr came and said a cardiologist review was needed and an echo. The next day I was told that wasn’t happening and I was discharged. I was then informed another dr has looked at my scans and didn’t think the change in the  scan was a stroke like reported. I asked what it was and they didn’t know. Nor did anyone find out. I’ve been discharged with no follow up, I had no treatment. I was there 13days. I can’t walk and I’ve had to hire a wheelchair. I set up a go fund page so I can get some physio and cover the cost of a chair. 

I’ve been granted help but even that has been stressful. 

This was on my care plan from social services 

MRI (24/1/2021) showed mild subarachnoid haemorrhage over right frontal cortical sulci. For conservative management. Repeat MRI (28/1/2021) showed a small lacunar acute infarct with restricted diffusion in the subcortical white matter of the right frontal lobe.

I feel really let down. I’m scared. I don’t know if this will happen again. I’m not sure why it’s happened. I have complex health issues. All the same I’ve been left in a awful mess. I’m in the middle of signing up to a New GP. I have just been left. 

I don’t know if anything I’m experiencing is normal. I know I’m not crazy. My eyesite is bad. I’m not sure when I should go to the optician. I did see a eye dr. Who said there was no damage but did say my muscles were moving very slowly. I’ve been left with double vision and my eyes don’t work together. I’ve noticed I’m forgetting things moment by moment. My spelling is affected. I’m dyslexic but it seems even worse. Emotionally I’m all over the place. I’ve got awful nerve pain in my legs. My pain in my head is severe. I’m exhausted. I can’t sleep. My speech today went  a bit slow and slurred. I was scared it was going to happen again. I’m not on any treatment. 

I am also sad because I am an actor/ singer professionally, I’m not even sure I will get back to that. I’ve faced so many challenges with my health and this feels such a massive blow. 

I am so sorry to hear about your awful time. You really have been  through the Mill haven,t you? You should have been allocated a stroke nurse when you were discharged, if you haven,t do get in touch with your G.P. and ask to be put in contact with one.  I think you are going to have to be quite forceful over this, as I find most  G.P's are not very helpful, but you may be lucky. I will be thinking of you and hoping that you get some help from someone. I am sure other members on this site will offer you valid information, so do look out for their posts. Do take care.

Jane.

Hi, sorry to hear of your stroke  at such a young age. Unfortunately, stroke recovery both in hospital  and following  discharge  varies tremendously  depending  on where  you are based in the UK. I have read some amazing  stories  of support and back up on this site. I live in Kent and had very little help or support once discharged after spending  12 weeks  in a rehab unit. 

Another website  you may find helpful  is:

differentstrokes.co.uk 

It is a UK stroke charity providing  a unique  service  to younger stroke survivors.  Hope you  find this useful. 

Regards Sue 

Yup, I found my GP was not interested. repeat prescriptions are all they think about. Physio was helpful though. But had to pursue that myself.I think it all depends where you live.

Das so sorry to hear of your hospital experience..I had an awful one (but yours trumps mine)..I concluded that the staff routinely treat psychiatric patients as sub human..and they see stroke patients as being borderline psychiatric..so they are happy to yell, belittle and mock..it brightens their day..and they know there will be zero come back from the half wits..sorry that sounds harsh..but I am still living with the psychological fallout 7 months later..bitter moi? yep.

I can't believe that this happened to you! I'm appalled! I had a lacunar stroke too and I'm also a nurse! I'm disgusted.

I would complain to the hospitals PALS team. Stands for Patient A... L iasion Service can't remember what A is.

Everything you wrote here should be  more than enough.

I wish you the very best of luck. Take one day at a time. Be kind to yourself.

Claire