• I was left with paralysis down my left side, blind in one eye and was told I would never walk again.
• The stroke occurred during NHS brain surgery and, in my view, was the result of medical negligence.
• Despite being given a poor prognosis, I was determined to recover and gradually regained mobility.
• After receiving limited NHS rehabilitation, my parents took early retirement and later downsized their home to fund intensive private physiotherapy.
• Through daily specialist rehabilitation, gait training and years of hard work, I made significant improvements in my walking and independence.
• The article highlights concerns that many stroke survivors receive less rehabilitation than national guidelines recommend.
• Experts cited in the article explain that stroke recovery can continue for years and should not be considered complete after only a few months.
• One of my major milestones was being able to walk as a bridesmaid at my brother’s wedding, something that had once seemed impossible when I was told I would never walk again. I was offered no physiotherapy through the Nhs so I taught myself to walk.
The article highlights my recovery after a life-changing stroke, the importance of long-term rehabilitation, the challenges faced by young stroke survivors, and the lasting impact that the stroke and alleged medical negligence have had on my life.
I love volunteering. I am currently volunteering for Kent Police and the Samaritans.
Hi @Ellie-Boakes and welcome to your first post in the community. Thank you for sharing your article and you are absolutely right that you shouldn’t believe everything you are told. We all firmly believe that recovery can continue for many years (in fact for life) as long as we continue to work at it. I don’t know if the medical professionals are just trying to manage expectations when they provide these deadliness but also there will be some people that don’t have the level of recovery they would like.
It’s good to hear that you have made such good progress even if you did have to pay for the therapy you required. Your hard work around this therapy will have played a massive part in this too. I bet you were really proud to walk as a bridesmaid at your brothers wedding.
Well done on your volunteering too. I find volunteering such a rewarding thing to do.
I think someone isn’t doing the maths right, but in my view having the right standard of rehabilitation across the board for stroke survivors would mean fewer PIP claims, fewer grants for mobility and such, possibly fewer GP visits and hospital visits, fewer prescriptions, and would create employment for people who could be trained to then have transferable skills that could be applied across all the disability and palliative sectors. Maybe I am wrong, I was never attuned to mathematics. Your story is inspiring, and hopefully councils and politicians will take note with the right media exposure and stroke-care body pressure.
Thank you so much. Your story is exactly why I don’t believe in putting limits on recovery. A 0.1% chance of success is incredible, yet here you are living your life and proving the statistics wrong.None of us are perfect, but having a life, independence and the ability to do the things that matter to us is what really counts.Thank you for sharing your experience and for your kind words. X
Hello Ellie,
I had exactly the same symptoms you list in your first paragraph after my stroke 5 years ago and, like you, I had to fund much of my recovery therapy, myself, My therapists have been wonderful and whilst I do not expect to ever get to Base Camp on Everest, I can now mobilise a little, Determination and hard work are what it’s all about !
I hope your recovery continues and wish you all the best for the future. Just don’t rush it !
Best regards,
Bob Isle
I completely agree that recovery doesn’t stop after an arbitrary deadline. I was told there would be limits to what I could achieve, but with the right therapy, determination and support, I have continued to make progress years later.
Walking as a bridesmaid at my brother’s wedding was a very proud moment for me and something that once felt impossible. It showed me how important it is not to give up and to keep pushing forward, even when progress feels slow.
Unfortunately, I did have to fund much of the therapy myself, but it made a huge difference. I firmly believe that everyone deserves access to the rehabilitation they need to reach their full potential.
I also find volunteering incredibly rewarding. Being able to support others and give something back has become a very important part of my life.
Thank you again for your kind words and encouragement
Ellie x ( sorry didn’t realise I couldn’t edit my posts on the site)
Well done on your continuing recovery. I’m constantly surprised by the old fashioned and outdated advice that is still being handed out by health care “professionals”. It has been known for a long time now, that improvement continues continually (albeit at a slower pace sometimes). As for people saying you’ll never be able to… they can’t possibly be in a position to say that to anyone! A health care professional said to me that I’d have to face the fact that I’d never be able to use my hand again. Apart from anything it’s very demoralising at a time when you’re feeling at your most vulnerable.
Like many people on here, the majority of my recovery assistance was self-funded. It shouldn’t be that way, but I can’t see it changing any time soon.
Thank you for your kind words. I completely agree that being told what you will never be able to do can be incredibly discouraging, especially when you are trying so hard to rebuild your life.
My experience has been very similar. Much of the progress I have made has come from refusing to accept the limitations others placed on me and continuing to work towards goals that some professionals thought were unrealistic. Recovery may slow over time, but I still believe improvement is possible, and I have seen that in my own journey.
I’m sorry you were told you would never use your hand again. Comments like that can have a lasting impact, particularly when someone is at their most vulnerable. It makes your achievements all the more remarkable.
I also agree that access to rehabilitation and support should not depend so heavily on personal finances. Unfortunately, many of us have had to fund therapies and interventions ourselves to achieve the best possible outcomes.
Thank you again for your encouragement and for sharing your experience. Messages like yours remind me that recovery is not always linear, but progress is still possible x
has certainly been a long journey, and I’m still working hard on my recovery.
What a small world! I know the Tonbridge area well. Coldharbour Lane isn’t far from me at all
Thank you for taking the time to comment and for your encouragement. It’s always nice to connect with people locally who understand that recovery after stroke is an ongoing process. Wishing you and your family all the very best. Hopefully we will see each other locally possibly shopping somewhere! X
I’m fairly sure that when medical professionals utter this kind of worst case scenario prognosis it is mainly to protect their profession against liability claims. The medical establishment is swamped with legal claims for all sorts of things, and if a doctor says you will walk again and the patient doesn’t, potential costly legal wheels could start turning, not just via the patient but the patient’s friends or family too.
It’s not helpful but I think it is a result of a wider blame culture problem.
You may well be right that clinicians are often trying to manage expectations and avoid giving false hope. I can understand why they are cautious, as every person’s outcome is different and there are no guarantees.
That said, I think there is a balance to be found between being realistic and being overly pessimistic. Being told what might happen is very different from being told what will never happen.
In my case, I wasn’t told the full truth about what had happened during my surgery. It was only later that I came to understand the extent of what had gone wrong and the impact it would have on my life. That lack of honesty was incredibly difficult to come to terms with and affected my trust in the professionals involved. X
Aye, especially with younger patients such as yourself, the brain and body is often more capable at bouncing back, not always in practice but in theory anyway. Many here on the stroke forum know what it is like being at the mercy of diagnosis or prognosis that feels out of their hands. In my case, misdiagnosed, had four strokes over three months, and even at the hospital, stroke wasn’t considered because I was forty-four. After CT scan, doctor informed me that my brain was okay, but an astute ENT specialist checked me out and thought it best to have an MRI. I was taken out of the ward to a private room and given the news I had incurred a stroke. Fortunately, the stroke consultant and I got along quite well and he was very proactive in assessing my prognosis for the best possible outcome. In some ways I have proved him wrong because my condition is still quite acute, but could have been worse I guess.
Welcome to the community! I’m sorry to hear about your stroke and the experiences you have had with the NHS and doctors.
Thank you for sharing your story, I’m sure this will be a real inspiration to others who read it. It sounds like you’ve done incredibly well in some really difficult circumstances!
I hope you’ll find this community helpful and I’m sure your contributions here will be helpful for other members too. If you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.
