Following my own experiences with inaccessible speech therapy, for my studies I’m developing an online resource to make speech therapy more accessible to different patients, and wondered if anyone has had similar experiences to mine? This could be from the perspective of stroke patients, carers, or healthcare professionals.
10 years ago, when I was 18 I suffered a stroke, which caused, amongst other issues, aphasia. I received speech therapy, and while the healthcare professionals were amazing, their resources were limited. This is in the UK through NHS which is sadly underfunded. The materials were targeted at elderly people and were for very basic levels of rehabilitation.
As a very determined 18 year old, the materials, which included words such as false teeth, abacus, etc, were not relevant to someone in my circumstances. There also wasn’t any opportunity to progress beyond basic speech therapy. For myself, I had hopes of going on to study after my rehabilitation, but couldn’t get the professional support to challenge me to a level where I could attend university, write long text etc.
I’m now working on a project to develop an online resource that offers speech therapy materials that can be adapted for different people’s circumstances. That could be age, difficulty level, language, profession, areas of interest.
I’d really appreciate any insights on this topic to understand other people’s experiences.
Hi @milliejc welcome to our little band, so sorry to hear you’ve had a stroke and at such an early age, that had to be devastating for you.
It sounds a wonderful project your putting together and I wish you every success.
It’s sad you weren’t able to access the correct rehabilitation to enable you to go on to university however it sounds as if your determination has paid off.
Take care and best wishes
@milliejc welcome to the forum. Although sorry you had a stroke at such a young age.
Your project sounds like a great idea. Its a shame that NHS SALT doesn’t cater for younger patients & is clearly a failing in the system.
I don’t know if you’ve heard of Different Strokes but may be worth you joining their Facebook group as it is specifically for stroke survivors under 65 & has a lot of young members.
I didn’t need SALT Post stroke so have no insight to offer sorry.
Best of luck.
Please do work on materials. I had help from SpeakwithIT now called Aphasia Support, a charity to help victims of aphasia through conversation practice by zoom and indeed by a cafe set up for some that can go there in Wakefield. We (my husband suffered 3 strokes and has some aphasia issues in speaking and cannot type or read [he can get some single words at a time with a picture for instance on Tactus] also have been using Tactus to get vocabulary back. It is an app geared to help from America but it needs a willing helper to facilitate it. This charity’s email is firstname.lastname@example.org, www.aphasiasupport.org and James Major is their Chief Executive Officer. Try contacting them. - they need volunteers to help facilitate things though. We, fortunately, have one girl volunteer who is a speech therapist in another area more than aphasia, who spends 30 minutes a week/ fortnight with my husband. I get him onto the zoom and then they carry on. -Anne
Hi, I read this thinking it was so similar to our situation. My 5 year old had 3 strokes and I found the resources the speech and language had were not suitable for him. They didn’t particular help with his aphasia and it wasn’t relevant to his likes and needs. Even the apps to help with communication weren’t too suited for his age. I hope this goes well and I think it is definitely needed.
Hi @milliejc, sorry I only just received so sorry if I’m a bit late. I know what you mean - I’m now 37, got diagnosed with stroke and aphasia when I was 35 and I can fully supports your views! I was was diagnosed during lockdown which did not help but I could see my speech therapy only had limited resources they can give me. There is nothing around going to work apart from the high level stuff that I should say and materials definitely catered for older people.
Your research project sounds really fun and worthwhile. I can’t tell you how much it’s needed
so I thank you for getting it started! If you need a volunteer for doing anything or contacts let me know and I’ll do what I can.
Good to hear of any resources relating to SALT as my wife has yet to be followed up by NHS SALT. More than willing to help her out if I can find great resources or tips
@AandKKay just popping by to say hi & welcome to the forum. Hope you find it a useful place to be.
Likewise just a drive-by post to say hi and welcome to the forum.
There’s a welcome post that we put together with some of the often said advice - click the blue text - amongst other things it will suggest how you can use the search above. Salt gets a lot of hits to do with cooking, but speech and language gets more than 50 you may well find useful information by reading them
There are endless apps available to help with things in the speech and language space I think I’ve posted some before but a quick search of the internet will throw up stuff and if you’ve got a specific questions then ask away. 'Eva park’ from UCL London is worth keeping an eye on I think they’re still in research mode but when they are widely available I think it will be a valuable resource
@AandKKay just stopped by to hi and welcome
When I had my stroke, we were in covid lockdown so the speech and language therapy I had was over the phone and I didn’t even have a smart phone back then. Needless to say I didn’t get much out of it, managed better on my own just reading out loud and mouth/throat exercises that I just instinctively wanted to do, need to do. Needless to say there’s not much more I can offer in the way of tips other than the more your wife talks the easier it gets with time…I read just about anything and everything out loud. I still have to give a little cough to rouse the voice box before speaking
My mother had speech therapy for almost 2 months, even though she really didn’t need it. The speech therapist made it all about just stimulating her mind. In 3 months time, my mother spoke like her old self; you would have never known she had global aphasia for a few weeks after her stroke. Her speech recovery was more or less spontaneous, as it happened in the first 2 months. Her emotional mind never recovered, though – things only got worse.
@OP How are you doing? How is your speech coming along? You can always make progress, no matter what, if you stay determined.
Take good care.