Disappointed and Frustrated

Hi Everyone
I had a stroke in January this year, as a result, I was left with weakness on my right side, unable to walk with coordination and uncoordinated use of my right arm. When arriving in A&E I was quickly taken for a CT scan which showed a small area of damage on the left side of my brain. After I got over the shock and disbelief, many tears and a long wait I was assessed to have a weakness in my shoulder and hip, I was unable to go onto the stroke ward as there was sickness and diarrhoea and covid on the ward. The care I was given on the AMU ward was excellent and I was discharged the following day. The Dr on that ward followed up with other tests and contacted me with the results. He then sent a letter to the stroke consultant explaining what he had done and requested that I was seen by someone on his team to answer any of my questions and talk me through what was to happen next etc. In March I still had not heard from them, so I phoned to speak to someone in that department, to be told they hadn’t heard of me. :grimacing: Eventually she tracked down the letter which had been sent to the wrong place. She assured me this would be dealt with promptly. So you can imagine my horror when the appointment letter finally turned up 2 weeks later for the 9th June. I feel very let down and cross. Fortunately I looked up this amazing website and have been comforted by the many posts on this forum. I began to realise that the experiences others were describing were just like me. Thank you all for your support.
Should I contact PALS to make a complaint or just accept it is par for the course??
I’m sorry to rant on my first post. I just needed to express my feelings to people that understand. :grimacing:

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Sorry to hear about thebad experience you had having a stroke is especially hard especially with covid you can be treated quite shabby because of the overwhelming pressure the staff are under it can be hit and miss affair good job you manage to keep the letter the same can go with the after care after having treatment if it makes you feel better write a letter to PALS just be aware that it will take them time to look into the matter but this site is brilliant for a good rant and we all know what you’re going through good luck in your recovery it will be a bumpy ride and a learning curve having a sense of humour helps :grinning: :blush:

I waited nearly two hours for the ambulance and then blues and two’s to hospital. Spent the next 27hrs in a&e waiting for a bed and with zero sleep. I did have a ct scan during first few hrs but no results were given to me until 2 days later.
I went on the mau ward for a night and then on to the stroke ward the night after. I discharged myself on the friday after waiting 4 days for further routine stroke pathway procedures to be done.
I ended up going private once home and saw the heart consultant within a week. It transpired he was the nhs consultant who i should of seen within hrs of being admitted to hospital who also bumped me from his cardiovascular list whilst i was in hospital. Go figure.
Felt more scared from thinking im not going to survive hospital than i did from my strokes. It transpired i’d had a bleed and clot!
The care was appalling.

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@Ke-N2pe32 hi and welcome to the forum where you will find support and advice through experience. Though I’m sorry you had a stroke then the after affects. This happened to me though I was misdiagnosed! Doctor said it was a migraine :joy_cat::joy_cat::clap: classic signs of stroke were showing. I have no faith in my hospital.

I sent 4 letters of complaint to my hospital which they twisted and turned into what they wanted. If you are in the right frame of mind for a battle just be ready for them to turn each word you complain about into an excuse or within their hospital policy!

Good luck and remember to rest as fatigue is overwhelming early on and your brain needs to rewire. Best wishes Loraine :blush:

So sorry to hear of your unforgivable treatment and experience. I fear this is a sign of the times and we shouldn’t be shocked be our experiences!!!
When we have been told such life changing news, I feel there should be a more consistent approach to a persons care and well-being (this being the buzz word)after such a diagnosis. I have been told many times since my stroke to take it slowly and look at the positives. (which I can and do) But it would have been a comfort to be able to speak to a specialist in the field of strokes, before 4 months have past and during the most important time of recovery.
We need to focus on a positive thought.
Q.What can I do now? A. Much more than I could do to start with. Hooray
Q. Do I have bad days? A. Yes but I am beginning to learn to do and then rest. And celebrate the good days.
Q. Will I make a Full recovery? A. Only time will tell and for sure life has changed for me as my busy job as an Early years teacher is a no no at the moment. But I am less stressed and now able to potter doing some of the things that bring a smile to my face.
Thanks for your reply

Thank you for your welcome and sorry to hear of your bad experiences too. I am not sure if I am ready for a battle or not but my husband is determined to get through to them that to leave a stroke survivor (I love this title) with no safety net is appalling and totally unacceptable.
Good luck with your recovery, I have really benefited from being able to read the many supportive and informative and sometimes funny posts on this forum over the last few months. Best wishes Dawn

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@Ke-N2pe32 We are the SS elite :flushed::clap::clap::clap::joy_cat::joy_cat:have a nice weekend best wishes loraine

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Many thanks and you.

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Hi @Ke-N2pe32 (Dawn), Sorry you had such a horrible time but I would recommend you let your husband follow up any complaint with the hospital as you need to 100% consentrate on your recovery. You will (or probably already have) find that even small things that you used to take for granted have become mamouth tasks.
Sorry you’ve had a stroke but I wish you well with your ongoing recovery.

go to pals get some answers

Thank you for taking the time to respond to me. Yes I will let my husband follow up a complaint as I tend to get cross about it, which doesn’t do me any good.
I do find some days little tasks are much more challenging. (silly me I thought I would be over it in a couple of weeks) I am not one for sitting still, so when the fatigue kicks in my temper and frustration levels rise and I have to listen to my body to rest. After working with small children all my life (I am 62) you have to have the patients of a saint, so have always been a calm, problem solving and empathetic person, but not good at applying this to myself.
Thanks again for your support, best wishes Dawn

Thank you This has given me the push to contact them.

@Ke-N2pe32 welcome to the forum. Sorry to hear you’ve had a stroke. You do seem to have been left in limbo a bit. Although the AMU dr looked after you it’s not great that you still haven’t seen a stroke consultant. I’m sure they could have visited you in AMU. I think the wait for your appointment is the norm these days but really isn’t acceptable. It must be quite scary not having any medical safety net at the minute. I think I’d be a bit miffed that there could be things you could be doing to help your recovery that you don’t know about.
Good luck with your recovery.

Ann xx

Totally get what you mean about the frustration. My stroke was June last year, I’m 56 and whilst now back at work (mostly working from home) the fatigue is the number one most difficult part to deal with as you don’t know how you’ll be from day to day. I also still don’t have any feeling in the fingertips of my dominant left hand which makes normal tasks much harder to complete
But on the positive side I’m still alive and have a fair quality of life so glad I’m a stroke ‘survivour’!
Acceptance & a sense of humour will come in handy on your journey.
Good luck.

Hi Ke–Have you had any rehab yet? Rehab helped me get my walking back and strengthen my weak side. :heart:Jeanne

Hi Jeanne,
I haven’t been offered any rehab, I am able to walk, this is through my sheer determination. I am beginning to pick up the pace now, but can find this exhausting on a day when I am more tired. I can tell when I am getting to my limits because my legs start to become weak, my right leg from the knee to my toes begin to feel heavy and my foot feels numb and cold. I also get a tingling/ numbness in my right hand and my shoulder spasms. This is when I need to rest, or should I be just pushing through this?

Hi @Ke-N2pe32, I would definitely say listen to your body and rest when it gets too much.

Thanks Ingo66 I was thinking as much, It is good to have others to bounce ideas off.

@Ke-N2pe32 I would agree with @Ingo66 that you should listen to your body & rest when you need to. Over doing it may slow your recovery.

Many thanks, a day for not doing to much today, I still feel guilty and think I should be able to do more but more and more I know I still need to give myself time.
Thank you all

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