Support

Im 5-6 years post stroke and in this time I’ve had virtually no support from the stroke association, even though I’ve contacted them multiple times via email & telephone.
I went back to my GP surgery and asked, given wellness services phone number, had visit and they contacted stroke association and got told don’t normally come to see survivors 2 years after only within 6 months, manager to get a wet room (bathroom), no contact since. I’ve gone back to my GP surgery , they’ve referred me to community plus and social prescribing, who are not talking to each other,community plus have contacted local stroke group who have sent me an email December 2021 , saying they will contact me in the new year and I’m still waiting.
I feel frustrated & annoyed that I’m getting passed from pillar to post and still struggling on by myself.
What can I do now?

@Jontybeever Im so sorry you are having hassle it makes it 10 times worse when you are trying to get help or support. Have you tried going through your stroke teams secretary? I’m a little bit unsure about what support you would like. If it’s mental health through your stroke the secretary should be able to help. Or this organisation if you get in touch with stroke.org. I’ve had lots of support from them and pointed in the right direction when I needed to be. I’m sorry I’m not much help. Maybe someone on here will have more ideas for you. I wish you well and best wishes. Loraine

Hi Lorraine, thank you for your words. I’ve spoken to Hannah Parrington , the area co-ordinator and had a long conversation with her about support and she hasn’t organised any support for me and I’m trying to get an answer through my local mp from the medical professional body since August 2021 and I’ve been chasing him and nothing has been forthcoming.
I just feel I’m being ignored and left to my own devices

@Jontybeever very frustrating keep at them you’ll get somewhere soon. Lots of positivity and good luck :crossed_fingers:

So agree with you. I have had no support at all, and to make things worse after my stroke they found a 9mm aneurysm in my brain, which is supposed to be being monitored, but because of covid couldn’t have any appointments. They monitored it by phone for a while… So clever this phone of mine that it can see inside my head!!! So I have just been left. Makes you feel so unimportant, what is it about us stroke survivors that makes no one care. Should we have not survived!!! Sorry about the rant, but having a bad day. Take care everyone. Jane.

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Jane, I so totally understand & agree with you, I’ve been nearly 6 years now, I’d like to swear profusely, but it is not good karma for here

@jane.cobley it does feel like that sometimes doesn’t it. I agree with both of you. It’s like we are unimportant. BUT WE ARE always remember that! Stay positive and keep on at them :wink:

Hello @Jontybeever

It seems you have been terribly unlucky. Six years post-stroke with virtually no support is quite incredible. I think post-stroke care is very poor and knowledge about stroke and what to do to help those who survive is possibly the worst. In this day and age with all the advances in medicine and technology, I find it hard to believe there is so little help available. It is definitely a subject where the medical profession has little interest and expertise.

If you survive a stroke, it seems the standard procedure is to discharge you asap and then pretty much leave you to your own devices.

The GPs have little or no knowledge on the subject and in our experience refer us back to the hospital, Care in the Community or Abbott’s (Mum is on PEG feed and so Abbott’s are deemed to be the experts).

What you can do and I expect due to the time that has elapsed it might be difficult is to find someone who is willing to take ownership of your condition. As you have found out and as we have also found, most organisations look to “exit” the support group asap.

  • Hospital - try to get you discharged asap and then “hand over” to GP or Community nursing or possibly on your own depending on your perceived condition.

  • Social Services (where involved) - look to close case asap and usually within six months

  • Stroke Association - six months to a year.

Unless you keep asking for help, they assume you are coping and will look to sign you off. Once signed off, it is difficult, though not impossible to get help - you have to keep knocking on the door. It is not easy and can be demoralising when you keep getting turned down.

I had to badger my GP for nearly six months before they finally agreed to do what they should have done in the first place. During this time, they even asked me to search for help on Google!!! They also tried to get me to seek private consultations (which I tried out of desperation).

I would suggest you go to your GP and explain to them you require help for a medical condition and as your GP it is their duty to help you. If they do not listen, ask them what their complaint procedure is and lodge a complaint. Go to the medical council to complain if you feel you are not getting help from your GP.

Is there anyone from your family or friends who can help you chase things up?

What about Citizens Advice? Have you tried them?

I am just trying to think of anyone who can help. Citizens Advice used to be good, but these days and with Covid and things being done on the internet it is not so easy.

Keep plugging away and believe that it will happen. Have faith and remain positive.

One huge positive I take from your post is the fact you have been going for six years post stroke without much help - to me that shows tremendous strength of character. So well done and keep going. :smiley: :star: :

Hopefully others on this forum may be able to offer better suggestions than I have.
Good luck and keep us posted :smiley:

ManjiB

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Hi manjib
Thank you for your reply,it is appreciated. I have put complaints in to my gp surgery , been referred to community plus and the lady I spoke to, albeit nearly 4 months has spoken to my local stroke association and I believe reading between the lines I think community plus has given my local stroke association a right good telling off , as my community plus has told me that the local stroke association is going to telephone me to give me some help.
I have contacted my local MP and got information from my local clinical care group regarding post stroke aftercare and nhs England post stroke aftercare.
I have put a complaint into my local clinical group regarding my gp surgery not providing me with proper stroke aftercare and such like.
I will get help and proper support that I should have got from the start from my gp surgery and the stroke association.
I am stubborn and will not let it go.

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Hi @Jontybeever - well done. Keep going and remain positive. You will get the help you deserve.

Best wishes - ManjiB

Hi jontys I also am 6 years post stroke an still have a lot of pain in my left knee after leaving hospital I had 12 weeks help then left on my own my gp isn’t any help at all an I tried the stroke team but they told me they can’t help so I just stay in constant pain.

@MERCman1 welcome to our forum where I hope you get some advice and support. Though sorry you had a stroke a while back I do hope you have improved a fair bit? I have numb thighs , pins and needles in my hands which I now know is carpal tunnel, unexplained pain and hot trickle feeling in my foot and back of my neck. no one was going to help me until I created a complaint. Now I’ve seen the neurologist (not the stroke team) who has scanned my neck and base of spine to check for anything pressing on nerves.(waiting for results) the Musculoskeletal doctor he sent me to a doctor who deals in hands and it’s confirmed the carpal tunnel. I’m having an operation on my R hand to widen the medium nerve and an injection in my left. Then the operation on my left once my right has healed. I think it’s pushing for answers and particularly certain doctors. I am having a nerve conduction test this Sunday and I hope to have answers .I hope this might give you some ideas. I wish you all the best Loraine :blush:

Thanks Lorraine I’m have a numb feeling in my left buttock down to my knee it’s also down the front of my leg it feels like the injection a dentist gives before treatment, the front of my leg also doesn’t like to be touched and spasms if anything touches it I have tried explaining it to my G.P but he doesn’t give any advice or refer me on to anyone.

Ask to see another doctor or change your practice. If he’s showing no interest tell him your going to complain or ask for the form as I did and lodge one. There’s only you can make it happen. I don’t take no prisoners anymore!! Good luck :crossed_fingers: Loraine

I too have pain where I had surgery. which was a bi-lateral endactomy on my neck , which my carotid arteries were blocked, I had 33 clips one side and. then 37 clips the other side , total 70 clips on my neck, it just feel like somebody is trying to. choke me , I also get cramp in my neck especially when I yawn.
as ive said ive had no help and I have complained to my GP about the lack of support and I have found out thru my MP the my local clinical care group states that as a person with strokes , I should have been referred to the stroke. association initially and that my GP should have given me a stroke review initially and follow up stroke reviews on a 6 month and an ongoing yearly review which they have not. I have put a complaint into my local clinical care group and they have passed my complaint onto NHS England who are investigating.
I have been in contact with my local community plus and the lady there has been persistent with the stroke group and has told me that the local stroke group should be ringing me , however I have received an email yesterday from them telling me the next stroke group meeting is the 15th April , which I have replied back to her asking questions and she has replied back denying it .
I would like to say that if you are still inpain contact your GP and Mae an appointment and tell them that you are in pain and that they must do something about it ,the GP has a duty off care

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@Jontybeever here here well said :raised_hands:

I also had right side carotid surgery and get spasms there I find putting pressure with my thumb were it hurts helps

I will get onto it tomorrow I hate going near them now because I feel like they’re just looking at me like I’m crazy he just keeps saying it’s the damage to the brain I’ve tried my best to try to make my leg work but think they should help more

GP should not be passing the book like that, If GP thinks it because of damage to your brain then he should refer you to either a neurosurgeon or physio, and or some sort of x-ray. Just be firm with your GP

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I’ll be taking to him in the morning I’ll let you know how I get on

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