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.

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.

Hi everyone, After listening to all of your feedback and all of our meetings over the last year or so we have broadened our understanding of what Stroke-Proof is about and come to see that we need to go much further than just prevention. Maggie and I are keen to write Stroke-Proof the book as a guide for Stroke survivors to help navigate the situation they find themselves in post stroke, but we need your help to get it right. We will be pulling in other professionals to help us write this and we'll need you all to tell us if what we are writing is helpful, but firstly we need to make sure we cover the correct areas. After reflecting on all that we have learned from you the below are our proposed chapters. Please let me know if these look right to you or if you think we should add or remove any sections or change the order. Part 1: The Beginning of Recovery 1. A Message of Hope - Recovery is possible - The brain can adapt and rewire - Progress often continues for months and years - Setting realistic expectations - Finding purpose after stroke 2. You're Not Alone - Stroke survivor stories - Different ages and stroke types - Lessons learned from recovery - Common emotional experiences 3. Finding Support - Stroke Association - Different Strokes - Stroke Proof - Online communities - Family and carers - When and where to seek help Part 2: Understanding What Happened 4. What Is a Stroke? - Ischaemic vs haemorrhagic stroke - TIA - What happens inside the brain - Areas of the brain and how they impact symptoms in stroke - Why symptoms vary between individuals - Dementia - the other major brain health condition  5. Tests and Investigations - CT brain - CT angiography - CT perfusion - MRI - Carotid ultrasound - Echocardiogram - Heart rhythm monitoring - Blood tests - What doctors are looking for 6. Why Did My Stroke Happen? - Causes of stroke - Blocked arteries - Atrial fibrillation - Small vessel disease - Rare causes - When no cause is found

After a stroke, you may suddenly find yourself taking several tablets every day. But often we aren't clear about what each tablet does and why. Many of the medicines prescribed after a stroke have one very important job — reducing your risk of another stroke. Here are some of the common ones: 🩸 CLOPIDOGREL / ASPIRIN — stopping platelets sticking together If you’ve had an ischaemic stroke — a stroke caused by a blood clot blocking an artery — you will often be prescribed an antiplatelet medicine. The most common long-term medication is clopidogrel. Aspirin is another antiplatelet and is commonly used immediately after an ischaemic stroke or TIA. Some people take aspirin instead of clopidogrel, and in certain situations aspirin and clopidogrel may be used together for a short period. These medicines make platelets less likely to stick together and form another clot. ❤️ APIXABAN, RIVAROXABAN, DABIGATRAN or EDOXABAN — preventing clots from the heart These belong to a group called DOACs — Direct Oral Anticoagulants. They are particularly important if your stroke was associated with atrial fibrillation (AF). AF causes the heart to beat irregularly. Blood can pool inside the heart, allowing a clot to form. That clot can then travel to the brain and cause a stroke. DOACs reduce the ability of the blood to form these dangerous clots. They include: • Apixaban • Rivaroxaban • Dabigatran • Edoxaban Some people need warfarin instead — for example, in certain types of heart-valve disease or with a mechanical heart valve. Importantly, anticoagulants and antiplatelets are not the same thing, and most people do not need both long-term unless there is another reason. 🫀 ATORVASTATIN and other statins — reducing cholesterol and stabilising arteries Statins are not simply “cholesterol tablets”. After an ischaemic stroke or TIA, a high-intensity statin such as atorvastatin is commonly prescribed to reduce the risk of another event. Lowering LDL cholesterol reduces the chance of cholesterol-rich plaques (artery deposits) growing or causing further problems in your arteries.

Hi everyone. I'm currently reviewing the support that we provide to our stroke survivors in the NHS, through this community and beyond. I have lots of ideas for things that might help, but rather than starting with my ideas I'd like to start by understanding what the biggest issues that need improving are. Please could I ask all of the stroke survivors in this community to think about the following and post your thoughts below, if you are happy to? 1. What did you need after your stroke that wasn't provided for you? 2. How long after your stroke was it when you were ready to really engage with information about your stroke? 3. Did you feel that you understood what to do to prevent a future stroke? 4. What do you wish you were offered/given/told about your stroke but wasn't? 5. If you could go back in time to when you were leaving hospital what would you tell yourself then? 6. If you were designing a service to help stroke survivors what would it look like? 7. What would have made you engage with stroke prevention before your stroke? Thank you for your consideration.