What the hell was going on?

Suffered a stroke in late Feb - only now is my doctor following up, nothing from the Stroke Assoc. I was discharged from hospital same day, zero support. It wasn't a TIA, suffered loss of mobility in left side which is improving hugely.

I'm lucky - on the way back to a good recovery (excellent exercise programme on the website), working part-time & walking up to 1/2 hour per day. I know it's difficult with COVID but was expecting some contact from my local stroke team - I did approach them but not heard anything since initial contact. Reading forums it seems to be a common theme.

Just thought I should reach out...................

Quite agree with you, it's a nightmare at the moment!!!! I am 16. Months post stroke and am desperate to see a neurologist for ongoing problems, but they are just not seeing anyone. Also my GP is only doing telephone apts,  no-one will see me!!! So you are not alone in this. Wish I could help more, but just thought I would reply. Take care, Jane.

Thanks Jane, good to hear from you. As I said I'm lucky- I'm doing well but feel like a ticking time bomb - just want diagnosis.

Have made lifestyle changes (food, exercise, business) - just hope not all in vain 

Especially with so much emphasis on our mental well-being, it is tremendously dispiriting to be so isolated with symptoms. I'm struggling to sleep at night, so fall asleep about 3 am, wake at 11 am but if I need to call my GP it has to be at 9 am. So, I'm stuck because if I don't get eight hours sleep, my symptoms are terrible, and forcing myself up that early to call means I have to wait for a callback and to compound things, only have a mobile and not good reception, so possibility of missing calls. A real pickle. 

Hello JP, I was saddened to hear of your experience and I hope you will find some support and help from the people who read and contribute to this forum. Well done for finding your way to this site as it’s not the easiest thing to navigate! I wrote a post to the Stroke Association 6 months ago which was in response to their request: “Share your experiences with students (Paid)” It seems not a lot has happened to improve the situation. You can find the original thread on the Forums page, under the Stroke Association section, click on Research Opportunities and you will see various topics. The one which I replied to (and the only reply!) is “Share your experiences with students (Paid)” about the 19th topic in the list. If you get lost in this site, and who doesn’t, then an extract from my reply to them (6months ago) is as follows: 

“....My other point is driven by a couple of recent posts from people who have had recent strokes and are”lost in the care system “. Whilst the Stroke Association have produced the following report: Stroke recoveries at risk report: our recommendations,... forum readers need to be aware of this (front page of the main site) and the Stroke Association need to be aware that some readers go only to the forum so may miss things. 

One of the recommendations in the report is: Stroke teams should follow up with all stroke survivors who had a stroke this year to review and address their recovery needs. NOBODY in our situation would ever disagree or fail to support this. My sadness is that it needs to be written in the first place and who is going to start taking some action? Is the Stroke Association taking action on our behalf and can they say what is happening to improve our situation?...”

Well JP, your post shows me that the SA are still missing the mark, any action that is being taken is not reaching people who need it. They needed to increase their contact with stroke sufferers and fill that space that COVID has created in recovery planning. Keep up with making the best recovery possible, good wishes Pat

The problem is The Stroke Association don't have supporters/volunteers in every town in the UK.  I don't have one anywhere near me or I didn't when I had my stroke 4 yrs ago.  There needs to be a complete care plan both mental and physical by the stroke consultants/nurses/neurophysios put into place BEFORE the patients are discharged.  This is where the system breaks down everytime.  There are so many links in the chain that never get joined up.  It's not just stroke patients, it's most things particularly when it comes to older people who need respite care before being sent home.  Families end up tearing their hair out because nobody in the various NHSs depts communicate with each other.

Boris is supposed to be scrapping certain procedures with the NHS systems to make it easier for a 'start to finish' plan for patients instead of depts denying all responsibility and passing the buck all the time - who knows when that will come into force though.

Good to hear you are making good progress though.

Yes I am with you all the way Rups.......everything is a nightmare, and I can't see things improving.  Like you, only have a mobile and live in a very rural area, so reception bad. The number of times I have been on hold at the Doctors Surgery, for ages, then will loose my signal and have to start all over again!!!! When I do get to speak to the Doctor, I get no help.......it's just, well you have had a stroke, and it is just brushed away again. As you said in your post, it is now impacting on our mental being as well. Anyway, thanks for reply, take care. Jane.

I am sure all  the lifestyle changes you have made will not be in vain. Keep up the good work. Know what you mean about living with a ticking time bomb, there are so many of us that feel like that. Take care. Jane.