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 hadnât heard of me. 
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??
Iâm sorry to rant on my first post. I just needed to express my feelings to people that understand.
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 youâre going through good luck in your recovery it will be a bumpy ride and a learning curve having a sense of humour helps 
Hi
I waited nearly two hours for the ambulance and then blues and twoâs 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 iâd had a bleed and clot!
The care was appalling.
So sorry to hear of your unforgivable treatment and experience. I fear this is a sign of the times and we shouldnât 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
Many thanks and you.
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 youâve had a stroke but I wish you well with your ongoing recovery.
Mark
go to pals get some answers
Ingo66
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 doesnât 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 youâve had a stroke. You do seem to have been left in limbo a bit. Although the AMU dr looked after you itâs not great that you still havenât seen a stroke consultant. Iâm sure they could have visited you in AMU. I think the wait for your appointment is the norm these days but really isnât acceptable. It must be quite scary not having any medical safety net at the minute. I think Iâd be a bit miffed that there could be things you could be doing to help your recovery that you donât know about.
Good luck with your recovery.
Ann xx
Totally get what you mean about the frustration. My stroke was June last year, Iâm 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 donât know how youâll be from day to day. I also still donât have any feeling in the fingertips of my dominant left hand which makes normal tasks much harder to complete
But on the positive side Iâm still alive and have a fair quality of life so glad Iâm a stroke âsurvivourâ!
Acceptance & a sense of humour will come in handy on your journey.
Good luck.
Mark
Hi KeâHave you had any rehab yet? Rehab helped me get my walking back and strengthen my weak side. 
Jeanne
Hi Jeanne,
I havenât 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?
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
I felt terribly guilty at the start too if I tested but now I know how important it is & I donât feel.so guilty any more.
Enjoy your taking it easy day
Best wishes
Sounds to me like ârest timeâ. I know in rehab it always felt so hard, and I would have to push myself and really âwork at itâ. But the exerecises they had me do were limited in reps. It might be 3 sets of 10 leg lifts, etc. So, walking is a lot more than that. I would âpushâ just a little, since if you always quit when itâs hard, youâd never progress, since itâs always âhardâ. BUT If you foot feels numb and cold that sounds like youâve gone past just being tired. In fact, you might even trip or stumble if itâs that tired and numb. I donât think you can âpush throughâ that. When I started to walk again, I would count my steps and each week I would add another 25 or 50 steps every week or so. I built up from 300 steps to 2 miles, but it took a very long timeâmaybe a year or two. Then I realized that 2 miles was too exhausting for me, so I have backed off to one mile. You canât âget thereâ by forcing it. Donât let the length of time discourage you. Just keep moving, or exercising at your bodyâs pace without over exhausting yourself, and youâll get there.
Jeanne