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sillybilly last won the day on 20 June 2016

sillybilly had the most liked content!

About sillybilly

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  • Birthday 16/02/1961

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    Staying healthy and keeping fit, raising awareness of Sepsis, crafts,cooking, reading, journaling
  • Sepsis Aware
    Sepsis Survivor

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  1. Hi Isabel Thank you for your reply. Im too young for Attendance Allowance.Its not very often Im able to say Im too young for anything as Im in my fifties so you have made me smile. Its only for people who are 65 years + Healing thoughts to all.
  2. I'm 6 months post septic shock and all that entails plus pneumonia and pulmonary embolisms. I'm a long way off being able to work because of constant leg pain and fatigue. I was fit and healthy pre sepsis and now use a walking stick and a wheelchair to get around. My SSP has stopped and my ESP ends this month. I have applied for contributory Employment Support Allowance. I know there are medical professionals who dont know very much about Post Sepsis Syndrome so I'm thinking the Benefits Agency will know even less and I might find it difficult to get ESA. ( Due to my husband's salary I dont qualify for any means tested benefits.) Does anyone have experience of applying for ESA because of ongoing post sepsis syndrome? Healing thoughts to all
  3. Hi Mark and Red I'm in a Scottish Health Authority and I know they have made a lot of progress in educating medical professionals about sepsis. It's the education of the public which is sorely lacking. In addition out patient and follow up care in my case has been awful. From acorns grow oak trees so if survivors try to raise awareness hopefully eventually things will improve all round. Its dreadful that water dispensers were broken for that length of time. We all know how important drinking water is to our health and you would think it would be a priority to provide it for patients. I have just signed up to try to be involved in patient groups in our Health Authority as I think its so important for our voices to be heard even if it takes a long time to be effective. I think the talks from the first World Sepsis Congress will be available on the internet over the coming weeks. Hopefully anyone will be able to access them whether they were registered or not. Healthy thoughts to all
  4. William and Sab85 Thank you for sharing your stories. You are incredibly brave. Take care
  5. Hi Mark I tried to reply to your post last night but unfortunately after listening to most of the Congress yesterday fatigue set in. I thought the same as you that surely having a mandatory sepsis protocol in place, is a no brainer, when it comes to saving lives. In addition because of quicker diagnosis those affected would hopefully have less debilitating after effects of sepsis. The only reason I can think of for this not being in place is that government and medical authorities want to see the evidence that lives would be saved. The speaker, Ciaran Staunton, whose son died of sepsis, spoke of the need to start locally and I believe initially worked for change at the hospital where his son died. New York is one of only a handful of states to have made the protocol mandatory with his aim being to make it nationwide. Perhaps we need to do likewise and start locally where we live to try and effect change. I have contacted my local health improvement officer and there is going to be an article about sepsis in the next bulletin in October. I put a piece on the Patient Opinion website and a local NHS manager has contacted me. Small steps but Im determined to do my bit to raise awareness. I was astonished to see that someone connected to my local hospital where they saved my life was speaking today at the Congress. Why was I astonished? There are no posters or leaflets to educate the public about sepsis in the hospital and neither me nor my family were given any information about sepsis. Most of the speakers said everyone needs to know about sepsis not just doctors and nurses absolutely everyone. Lets hope one day there is a mandatory sepsis protocol in the UK if not worldwide. Healing wishes to all survivors
  6. Hi Libby and Ian Many thanks for your replies to my post. I know the Sepsis Trust is a small charity and understand the cost implications in supplying literature to NHS facilities across the country. It would be cost effective for the NHS to purchase leaflets and posters to raise awareness as they would save money in the long term. If patients receive a prompt diagnosis not only does it save lives but hopefully people having received the correct treatment from the start would recover quicker and have fewer long term problems. In the meantime I am trying to raise awareness locally. You were very brave to do an abseil Ian good for you. It is true people did not speak about cancer but now that the vast majority of us have been touched by it in some way and know people who have not only survived but have also been cured it is no longer a taboo subject. I hope your health continues to improve. Lesley-Anne
  7. Hi Ian It's 6 months since I left hospital after a month stay battling sepsis, pneumonia and pulmonary emboli. On my discharge note it states I could return to work after 2 months!! I now realise how unrealistic this was and unfortunately I am nowhere near able to return to work. My GP has just given me a fit note, (Im chuckling to myself as I type this) stating I have post sepsis syndrome. I have no stamina, constant pain in my legs which always feel weak and heavy, I have nightmares which are always hospital based, I've lost 50% of my hair and my mind is not as sharp as it was before. Last week I had to take my parents to our local hospital where I was an inpatient. I was driving and an ambulance, siren on, went past us not an unusual occurrence especially near a hospital. I could feel my heart pounding and I gripped the steering wheel like a vice while trying to keep up appearances for my elderly parents. I have always been proactive regarding my health and I've been told my healthy habits are probably what helped me to survive. I drink lemon and ginger tea with honey first thing every morning, I drink 2/3 litres of water per day, I eat my 5 a day, I'm following the exercises given to me by my physio and I focus on the big plus I'm alive to be able to moan about my ongoing health problems!! I was extremely lucky to get a prompt diagnosis in A&E and excellent inpatient care the majority of which was in ICU. My follow up out patient treatment has been poor and disjointed and I wonder if this is significant when it comes to post sepsis syndrome. Had we suffered a heart attack or stroke for example there are clear guidelines for our after care not so with sepsis. Locally I would have been supported by a rehab team from day one at home which would have included physiotherapy home visits. My reality was no physiotherapy for 3 months, no respiratory follow up for 3 months and no information, advice or support regarding Sepsis. I was so grateful when I discovered the Sepsis Trust and was able to get their booklets. I think my reality is probably a lot of survivors reality and I do think it probably contributes to PSS. I have contacted my local health improvement team and wrote on Patient Opinion about my experience. In the last few days I have been contacted by a local NHS manager and I've been invited to have a discussion about my out patient care. I have also raised the issue of the lack of publicity and information on Sepsis in Scotland. I have attended numerous hospitals, clinics and my GP surgery over the last 6 months and have not found 1 leaflet or poster about Sepsis. I know there has been a lot of work raising awareness of the Sepsis Six with professionals but there appears to be no publicity material aimed at the public. As we all know knowledge is key to cutting the number of deaths from Sepsis. My own view is that just as there needs to be a lot more awareness about Sepsis there also needs to be a lot more awareness of the after effects of Sepsis and PSS. With more awareness hopefully comes more support. Healing thoughts to all survivors Lesley-Anne
  8. Hi Gillian Thank you for the information. I am glad you are improving. I cannot praise the medical professionals who saved my life in February enough. My inpatient care during the month I was in hospital was marvellous. Sadly my treatment since has been woeful. I have had to fight for non routine follow up appointments which has not been conducive to my recovery. I take my Sepsis Trust booklets to appointments as I usually find no one has heard of Post Sepsis Syndrome. I feel I have just been left to get on with it. Prior to sepsis I was constantly on the go between working, helping my elderly parents and being a kinship carer. I'm now struggling with constant fatigue, leg pain, nightmares etc etc. I have to use a wheelchair to do the weekly shop. I have been to Occupational Health twice and my job is in jeopardy. I have always been very proactive regarding my health and Im trying to do everything I can to help myself. I practice mindfulness, drink 2 litres of water a day, have a very good diet and eat my 5 a day and Im doing exercises to try and improve my mobility but I'm struggling. I will contact the Facebook group and thank you again Gillian for the information.
  9. Hi Supertractorman Hope you are feeling better than you did a few days ago. I'm a Sepsis survivor and I live in Scotland. My sepsis in February 2016 was a result of a trapped kidney stone which resulted in urosepsis, septic shock, pneumonia and pulmonary embolism. I sympathise with your frustration at the medical profession. I had marvellous care while an inpatient and know they saved my life on numerous occasions during my month stay in hospital. My problems have all been in my after care. My referrals for follow up upon my discharge were all inadvertently done as routine instead of urgent. My GP practice made telephone calls and then I followed them up. On some occasions I was spoken to dreadfully by admin staff inferring I wanted to jump the queue and wanted special treatment. As you are probably aware there are treatment time guidelines and if you have been referred as routine then you will have to wait until the limit of the timescale. For example I was told it would be September before I saw a physiotherapist for assessment but because of my dogged persistence to follow up every phone call I am starting my physio this week. Every consultant I have seen for follow up has apologised for the delays and told me it is unacceptable that someone who was so critically ill has had to fight to get appointments. I would like there to be specific guidance on follow up procedures for people who have had sepsis. It may already be there but in my case it was not followed. Once again I hope you are feeling a little better and it is tiring and frustrating but keep on fighting to get the proper treatment you need. What about your GP practice could theysupport you or help you to access treatment? A good GP is "worth their weight in gold". Take care
  10. Debbie - I understand how you feel about people thinking you should be better after a period of time. I have found very few people who know what sepsis is and its only when I explain in detail that they understand. I dont know how old your children are but do you have anyone who could watch them for an hour a day to let you have a nap? I agree that more support after hospital would be good. The Sepsis Trust has been my main information source and I think it helps that we can chat on the forum. I hope your health starts to improve soon x Lesley-Anne
  11. Hi Libby Pleased to say my GP has referred me to physio and they are able to refer me to hydrotherapy. Recovery progressing slowly but at least I feel I am making a little progress. Many thanks again for your call.
  12. Thank you for your replies. I cannot take ibuprofen as I'm asthmatic but will try a hot bath. I agree we are all very very lucky to be here and if I have a few residual issues its a small price. Take care and stay sepsis free!
  13. I was in hospital from 4 February to 3 March with severe septic shock which included organ failure, pneumonia and blood clots in my lungs. I was not expected to survive but here I am! I'm doing great all things considered. The most debilitating condition I have now is very painful knees. They are not hot, inflamed or swollen but the pain coupled with the obvious fatigue is making it very difficult for me to walk. Resting doesn't help and trying to walk through the pain doesn't help. I'm 55 but did not previously have any joint or muscle problems. Has anyone been similarly affected and did anything help? Thank you in advance.
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