Good afternoon. Unfortunately, on Monday next week I'm on call for Stroke at Aintree and so can't do the group meeting that we had scheduled for 4pm. As such I have moved it to the Tuesday instead. I hope you can make it then. The purpose of the meeting is to have a space where we can all share how we are getting on, any challenges we have had and to share ideas for how to manage them as well as to how to keep working on reducing our future stroke risk. I look forward to seeing you there.

Firstly, I am sorry if I offend any professionals, they have all been nice dedicated people, but they’re also complicit in the shortcomings of post stroke support This report is a result of a survey in which I participated. It highlights the shortcomings in post stroke support Firstly, the report speaks about the first six months and that this is the best chance for recovery. I spent 4 months in Hospital following the incident and I received little to no therapy. What I did receive was mostly aimed at freeing up my Hospital bed not improving my condition, but meeting certain milestones to discharging me. EG how far can you walk with a stick? Can you sit in a chair for six hours? So much of that six month window was missed. When I was discharged, I received a little therapy but again mostly aimed at a checklist not aiming to improve my disabilities but rather meet certain milestones. EG how fast far can I walk with a stick? Can I prepare my own meal (even though I can’t cook it and I can’t actually lift it to another room to eat it). And that post Hospital support lasted 2-3 months. Then for the following 6 months I have received no NHS physiotherapy and the occupational therapist was basically just a conduit to obtain various aids rather than to obtain any chance of actual recovery so I had to resort to paying for a private physiotherapist. I have two versions of this report a short one for victims and second longer one for professionals. Which the author has asked me to share

I haven’t received any NHS Physio Therapy since I was discharged from the ICSS in April and referred to the Community Team apart from two social visits with the OT to introduce themselves . I can’t leave my home yet so my options were limited. Firstly I saw a specialised stroke private physio (once) at home and was severely underwhelmed, I only saw him once. Then after a few months I saw another (non-specialist)Physio and I’m glad I persevered as everything he does seems relevant and although I’ve yet to see any significant benefit. I feel that I’ve a much better chance of a partial recovery than I did sitting on my backside waiting for NHS help. It’s money that I can’t really afford, but then again, I can’t afford to do nothing and if anyone is thinking of spending some money on a private Physio, if you get the right one, it’s definitely worth it. I’m willing and able to do anything I can to improve my situation, but it seems the NHS does not have the facilities to help

Good afternoon, everyone. I'm hoping some of you might be willing to help me with something that's very close to my heart. I'm looking for volunteers who would be happy to spend around 30 minutes chatting with me, either on Teams or over the phone, about your experiences following a stroke. *Why am I asking? Having worked in stroke medicine for many years, I know how much of a difference good care and support can make. But I also know that, despite the dedication of so many NHS staff, stroke services don't always provide everything that survivors and their families need. Sometimes that's because of limited resources. Sometimes it's because we, as healthcare professionals, haven't spent enough time really listening to people who've experienced a stroke and understanding what matters most to them. I want to help change that. But first, I need to listen. I've already had the chance to chat with one or two of you in detail and several fo you have replied to my prior post asking about what you needed after a stroke. This time I want to use the time for the conversation to go a little deeper. I'd love to understand more about your experiences, including: - How did you and your family feel in the days, weeks and months following your stroke? - What were your biggest worries, questions or frustrations? - What information or support did you need but struggle to find? - Where did you turn for answers? - Looking back, what could have made your journey a little easier? There's no right or wrong answer, and I'm not looking for anyone to share anything they feel uncomfortable discussing. Your experiences, whatever they may be, are what matter. *What am I hoping to achieve? My ambition is to make life after stroke a little less frightening, confusing and overwhelming. I want future stroke survivors and their families to be able to find clear, trustworthy information, practical advice and meaningful support without having to spend hours searching or feeling that they're facing everything alone.

Good evening. Just a reminder that we have our catch up tomorrow at 4pm. Link in the calendar section of the app. A chance to share how we're getting on, what our plans are to keep our stroke risk down, ask questions and make friends. If you have any specific questions feel free to share them ahead of time in here and I can prepare answers, or I can answer off the cuff if needed! Have a lovely evening. Nik