stroke survivors after care — Scope | Disability forum
New to the community? Remember to read our community guidelines and our community house rules.
Concerned about another member's safety or wellbeing? Find out how to let us know.

stroke survivors after care

davet
davet Member Posts: 77 Courageous
 I had a stroke 10 years ago leaving me badly disabled, the only follow up care I received was a couple of weeks physio in the rehab unit, after my discharge I had nothing else other than a couple of appointments with a stroke doctor who spent most of the time telling stroke jokes, I would be interested to know if there are any other stroke survivors on here and if so what follow up care they received

Comments

  • woodbine
    woodbine Community Co-Production Group Posts: 5,256 Disability Gamechanger
    I had my first stroke 23 years ago at the grand old age of 38, which I made a good recovery from, my second was a few months later which left me with a left side weakness which I still have and severe epilepsy (which i still have), have also has a number of mini strokes since.
    My follow up re:strokes was minimal, have you spoken to your GP about any suggestions they may have?
    Offering PIP advice to people with epilepsy.
  • Cher_Inactive
    Cher_Inactive Posts: 4,414

    Scope community team

    Hi @davet

    I'm sorry your after-care left a lot to be desired :(

    The official National Institute for Clinical Excellence (NICE) guidelines (2013) around stroke rehabilitation, state that:

    After your rehabilitation is complete you can still get more support if you need it. You should be given details of a professional to contact, or you can contact your GP. They can refer you back to the rehabilitation team for advice and treatment if necessary.
    You should have follow-up appointments 6 months and 1 year after your stroke, and then once a year. At these appointments, your healthcare professional should ask how you are managing and whether you are still making progress towards your goals.
    If you are still having difficulties with language or communicating you should be referred back to a speech and language therapist for an assessment of whether more treatment could help you. You should also be offered assessment and treatment if you are struggling with your emotions and feeling low.
    NICE has also produced advice about preventing further strokes in people who have had a stroke (see Other NICE guidance).
    Bearing this in mind, it might help to speak with your GP - as @woodbine suggested - about any of the symptoms you're still experiencing and what treatment options are open to you.  Has your doctor offered any input along the way?

    Also, I don't know if you're aware but the Different Strokes charity have local support groups (currently held virtually) where you can meet other stroke survivors and hear their stories, so maybe give that some thought. 

    I hope you are doing well today.  Speak soon.  
    Online Community Co-ordinator

    Want to tell us about your experience on the online community?  Talk to our chatbot and let us know.

    Concerned about another member's safety or wellbeing? Flag your concerns with us.
  • davet
    davet Member Posts: 77 Courageous
    thank you woodbine and cher,sadly my GP seemed happy in the first instance to pass me on to  a stroke doctor despite my telling him how useless he was, my main problem is my left arm and hand still do not work, but my GP's answer to this 'they will never work now' I have never had any of the follow up appointments mentioned by cher nor have ?I been directed to any rehabilitation organisations I feel completely let down by our NHS particularly as it was their negligence which caused my disabling stroke which of course they deny
  • lisathomas50
    lisathomas50 Posts: 4,584 Disability Gamechanger
    I had my stroke 8 years ago I was in hospital for six months I had physio every day and speech therapist after I went home I had the same treatment for 12months after I cant feel my left side and its weaker then my right side but I can walk but not far as I haver problems but I am back in work I couldn't thank everyone enough sorry to hear you didn't get the same help 

Brightness

Do you need advice on your energy costs?


Scope’s Disability Energy Support service is open to any disabled household in England or Wales in which one or more disabled people live. You can get free advice from an expert adviser on managing energy debt, switching tariffs, contacting your supplier and more. Find out more information by visiting our
Disability Energy Support webpage.

Fancy a chat in our virtual coffee lounge?

Put the kettle on and have a chat in our coffee lounge with other members. We talk about hobbies, games and anything else you can think of!

Cerebral Palsy (CP) Online Cafe

Here's a new opportunity for people with CP or a similar disability (aged 20+) to get together and chat. The sessions are in partnership with CP Sport so you can find out more and meet people from both organisations.

Are you struggling?

Read our 'Coping with stress, low mood and isolation' support thread for a run-down of ideas on how to banish those blues and feel happier.

What do you think about the community?

Complete our feedback form and tell us how we can make the community a better space for you.

Information about COVID-19

If you have questions about the virus, please read our information and support which includes guidance on benefits, getting food and essentials and Cerebral Palsy.

Back to school this September?

Read tips on how to settle back in and handle any worries you or your children might be having this new term.