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#75 My Thanks

Posted by Mark Sollis on 11 June 2014 - 06:46 pm

Well It's a start

 

Full story may follow

 

Attached File  Thanks to You.pdf   1.4MB   309 downloads

 

 

 

 

 


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#504 Post sepsis

Posted by philly on 29 March 2016 - 07:21 pm

yes totally normal. make sure you talk to the people you trust. sepsis is life changing. your priorities will change (for the better). write down your experience- I found that helped too. you might find you have PTSD... you might at some point need to speak to your GP about counseling... it all helps. stay strong :)


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#743 Benefits!

Posted by Leila on 12 September 2016 - 05:58 pm

Hi. To get contributions based ESA you will need to have paid enough national insurance contributions in the two tax years proceeding the current benefit year and then you will need to score 15 points on the ESA assessment. Contribution based ESA is only awarded for 12 months, unless you are assessed as qualifying for the 'support group', which is the highest award, in which case there's no time limit as long as you meet the other conditions.

You could also try applying for personal independence payments (PIP) as this is an additional benefit you can apply for as well as ESA and it is not means tested. I am currently working part time at home and have applied for PIP.

A good website for further information is 'Benefits and Work', there lots of info on there about both benefits and some practical tools to help you. You could aso check if there is a welfare rights service in your area or ring the CAB.
If you have any further questions, let me know ( my partner is a welfare rights worker and I work in a similar field).
Thanks
Leila
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#6 Mark Sollis - Thanks To All At Good Hope

Posted by Mark Sollis on 23 March 2014 - 09:02 pm

So here is my thanks to all at Good Hope

 

I'm still here because of them and hope you find comfort in knowing what the NHS can do when we are in need

 

 

http://sepsistrust.i...ages-of-thanks/

 

M

Attached Files


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#594 More awareness for surviviors

Posted by Gillianflutes on 29 May 2016 - 02:36 pm

I seem to come on this forum when things are challenging! The weather has been BEAUTIFUL this weekend so I weeded yesterday and generally did too much! Today, is still beautiful but after doing some of what I planned I am on the couch! Yet again, I find myself trying to stay positive. I know I'll come throu this as I am determined that I will!! Not sure how sometimes though. I am coming up to one year post-sepsis and although I am doing more I still have so many aches and get so drained of energy.

This week has been special. One of my daughters had identical twin girls. They are adorable! They are numbers 3 and 4 for my daughter so life is going to be interesting! These positive events are so important and help to keep me doing everything possible to get better.

Good to have you all here to share ups and downs with. Anyone from Scotland?
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#166 Loss of Oliver.

Posted by Balley77 on 05 September 2014 - 07:19 pm

I am so sorry to hear what you went through Terry. It is frightening how quickly Sepsis strikes, and there is such a small window of opportunity to treat it. If that window is missed or overlooked, it has devastating outcomes.

 

Things are obviously still ongoing with you at the moment, and still very raw. 

 

I am sure you know that we are all with you on this one, and if there is anything we can do, please just ask or PM.

 

Sarah


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#995 Post Sepsis Syndrome

Posted by Supertractorman on 07 February 2017 - 11:25 am

Last year I became involved with the local hospital Patient Bank Programme where we role play or display our own conditions to student doctors, nurses and pharmacists, for their training courses. When speaking with them I like to raise my experiences of Sepsis in the hope they are made more aware of the condition and what to look for.  I believe many teaching hospitals are starting programmes like this nowadays and it is nice to help the youngsters in their career.


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#97 Overcoming Adversity

Posted by Dave Carson on 17 July 2014 - 09:55 am

Today I am putting final touches to my talk. I have been invited to be guest speaker at an event in the Guildhall London. I will be giving a talk to a group of police officers on overcoming adversity. I also hope to raise awareness of Sepsis.


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#795 More awareness for surviviors

Posted by Gillianflutes on 09 October 2016 - 06:19 pm

Hi Anna. As you will have read, there are so many of us! Not sure if that will help you right now but I want you to know that I never thought I would ever feel normal again. It took just over a year before I could say that I felt normal. My normal has changed. I was extremely fit and although I am feeling better, my fitness is nowhere near where it was. I am gradually getting back to it but most importantly I am just grateful to be here. I will have continuing hospital visits linked to my dodgy kidneys but I can cope with that. I still have a little pain but again it is manageable. My tiredness is a more normal tiredness. When the chronic fatigue was at its worst, it never seems to go and I couldn't stay off the couch or my bed for very long. Now when I feel tired, I rest and I feel better.

You will get back to a more normal life but it will be the toughest fight yet. It is a fight worth fighting though. We made it! We survived!

All the best to you. You CAN do it. Xx
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#773 Struggling to return to work

Posted by MarkDUK on 01 October 2016 - 10:49 am

Hi KiwiGirl,

 

Thank you for sharing your story.

 

I also was diagnosed with sepsis and post hospital with PTSD.

Both cognitively and physically sepsis has meant I am no longer able to do things I could before. In the early months/years I measured myself against my pre sepsis self and this would lead to lack of confidence and upset. It is my opinion that until you are able to accept 'being different' you will not move on and like your new self.

Cognitively I am hopeless at multi tasking (then again I am a man!) and get quite disorientated when tasked in this way. Furthermore my listening skills have suffered. It's difficult to explain but it is though I have to tell my brain to listen rather than doing this automatically.

 

Dealing with this - as I've said once you accept you will unlikely return to the person you was (maybe not a bad thing) it will be difficult to appreciate the person you are. Look for positives in the new you that are important in your job. For me I have more compassion that has led to improved work relationships and improved performance from those around me. Because I have to tell myself to listen I am surprisingly a better listener. I celebrate the ability to listen and in doing so find myself listening far more now. Now I am better at delegating tasks, due mainly to not having the energy to now do them myself. Delegation leads to improved job satisfaction to those around you and improves their potential to your organisation.

 

Tiredness often described on this forum as exhaustion is very common with sepsis survivors. For most it does get better and for the majority of the rest they accept it and either just listen to their body and rest when it tells them or in my case try to not have extremes. Extremes in that I don't push it when feeling ok and then I find I don't have as many 'exhaustion' episodes.

 

You are doing really well. It's brilliant to hear of the medics in NZ and your company's appreciation of your skillset in accepting a shorter working week. Please be kinder to yourself as you've been through I very scarey period and your body has taken a real beating. Measure yourself against post sepsis and I'm sure you will see how far you have come. A diary often helps others. Note any advancements you make, things that have made you smile and your concerns. Looking back in your diary will confirm you are making good progress.

 

All the very best,

 

Mark


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#730 New guidlines for the NHS 13th july 2016

Posted by red squirrel on 11 September 2016 - 03:16 pm

Came across this from the NICE website,proposed new guidlines for the nhs regarding sepsis,including Dr Ron Daniels of UKST,and a short vidio with stella a sepsis survivor.

 

http://www.nice.org....ttack-says-nice

 

red


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#727 Sepsis Mandatory Protocol

Posted by red squirrel on 11 September 2016 - 12:18 am

hi mark,having a mandatory sepsis protocol would be a great step forward,there are already existing protocols on other conditions,to enact another for such a serious condition would save many more lives (and money too),even including information on sepsis with discharge notes could i believe have an immediate effect on some patient outcomes,a part of this issue is patient re-admissions,its quite hard to find decent stats on numbers and when you do its full of caveats,but its a growing problem ,According to the NICE website about 350k patients are re admitted within 30 days of discharge,but this info is then filtered down into various subgroups with no number regarding sepsis, even these numbers change when a hospital is part of a larger trust,but this is known problem and hospitals are fined for patient re-admission,but its not really a fine as such they are instead not paid for whatever treatment is required on re-admission,I think people could be saved at the front door when they arrive with some basic tests and at the back when they are discharged with some basic information.

You have mentioned bureaucracy and whilst mindful that this may be going of topic i must mention my  great water dispenser battle,back in 2012 whilst attending a pre-op i wanted some water but is was broken with an old bit of cardboard explaining that,i asked a nurse she said oh yes we know about that,2013 same...with same bit of cardboard,this was depressing so i photographed it and reported it to PALS, fast forward 2014 same bit of cardboard,still broken,my hospital now runs  patient led assessment teams ,who go in and with others advise where the hospital they could improve service to patients,so i joined,unfortunately my team did not assess the pre-op part of the hospital but we went to other wards and departments,and in one of these departments there was a broken water dispenser with a sign,i asked the nurse how long it had been like that and she said before i moved here two years ago and she had reported it also,

Trying to effect any kind of change with the nhs is difficult even for those on the inside....other issues were also noted and hopefully acted on.but its a slow process

Reading these posts has reminded me to do what i can to get the message out there,so i will take some leaflets with me  to the doctors next week and  to the hospital in october and see what kind of response i get.

i missed the WSC16 is there somewhere on youtube i might find it?

 

kind regards red


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#604 One year later

Posted by philman on 30 May 2016 - 02:20 pm

Hi Michelle,

Just a quick post to reassure you that you are firstly, you are doing great - well done for battling on and getting back to work (although it sounds, like many here, you are finding you need to not over-do it!!), and secondly, yes you are going through the same draining fatigue among many other other symptoms that many of us are learning to live with and it seems to be normal for us survivors. Hang in there!! I am about 2.5 years out from Sepsis. I work 3 days a week as a music therapist and 2 days from home on my own business as a graphic designer, and to be honest the 2 days at home since sepsis have been rest days really and my business has suffered. However 2.5 years has seen some improvements, the fatigue can still really smash me, but it happens less often. I have learnt and am still learning to pace myself more (very frustrating!!). Still get leg pains etc and various other pains in my body. Still vitamin d deficient since sepsis. Have found that making sure I drink enough water daily does help. Used to be very fit prior to sepsis, and am frustrated that I have put on some weight over these 2.5 years as I can't (or am too afraid) to exercise like I used to. I would love to get running again, but fear that I may need time of work if i try!! One day - hopefully!! Anyhow, things are improving - but it is a slow process - be kind to yourself. If you have read any of my posts you may have seen that is took me a whole year before I had the energy to walk my kids to school - about a 10 min walk. Now I have no trouble with this :-) Like you are finding, there is very little support for us survivors, this forum is great, and a couple of facebook ones are good too, the NHS don't seem to have many answers and just put most of it down to chronic fatigue or post infection fatigue and say "there is no magic pill". I hope to get along to one of the UK sepsis trust support groups soon as i think it would be good to meet with others who understand what we are struggling with etc. But please remain positive - I hope this post doesnt come across as negative, yes I still struggle with health - but it is improving as the years pass. Stay hopeful, look after yourself, all the best...

Phil.


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#522 Relatives of sepsis survivors

Posted by Palmiter on 01 April 2016 - 03:09 pm

Hi Clare,
Very often people who do not WHAT Sepsis is, also fail to understand the long term effects of it. I had Sepsis 5 years ago and still walk as if I have had "one too many!". Friends and even family mistakenly view Sepsis as a period of severe illness that you eventually "get over". But as you know, that is indeed not the case. This, of course, leads others to believe you are starving for attention and sympathy, and assume you are emotionally weak and insecure. At this point in my life, I'm just happy to be alive and the unwarranted comments from others just go into my "ho hum" box.

It will get better.

Bob
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#513 Debilitating knee pain

Posted by Palmiter on 31 March 2016 - 02:47 pm

Hi Billy!
I had a 4 month hospital stay with SEPSIS 5 years ago, and I was not left with knee pain, but overall leg pain. From what my Doctors have told me, this is probably caused by muscle inflammation due to the SEPSIS, and may or may not improve. Ironically, it occurs only when walking or standing, but never while swimming or doing "leg excercises".

As you probably know, SEPSIS can ravage the body, and the fact that we both survived, is indeed a miracle. I guess the pain is just a uncomfortable reminder of how lucky we are!

Bob
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#314 Length of recovery? Is this normal?

Posted by philman on 27 June 2015 - 12:00 pm

Yes, listen to Isabella...

 

It is so easy to fall into the trap of having a 'good' day and then over doing it with the consequence then having many bad days after!! I also have learned the hard way. After my initial battle with sepsis I went back to work way too soon and tried to carry on as normal... but unfortunately this doesn't work!! You need to listen to your body and get LOTS of rest. Be kind to yourself, lots of sleep, lots of relax time... getting better from sepsis takes little steps, but things will improve.

 

Keep safe, Phil.


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#310 Length of recovery? Is this normal?

Posted by Libby on 26 June 2015 - 08:28 am

Hi Michelle,

Yes, unfortunately, we would consider it perfectly normal to feel so exhausted following even a short bout of sepsis. Seven weeks is very early on in your rehabilitation from this illness. I'm glad your GP has taken it seriously though- often people just get told to 'pull themselves together' and get very little help at all. Sometimes the autonomic nervous system can be affected which can lead to palpitations, dizziness, excessive sweating, bladder control problems etc (anything which is under the body's automatic nervous control), so it would be good to get the physician to just check you over. Usually, these things settle in their own time.  Generally, you are looking at months rather than weeks.However, you should improve during that time - you just may not notice the small changes as you go along. Keeping a diary of your progress can help you see these improvements.

 

We have a 'Survivors Booklet', which you can either download from our website - under 'info for the public' or if you phone the office on 0845 606 6255 they will send you a copy.You could take it with you to show your GP. It goes  through what to expect. There's also 'A Guide for Patients and Relatives' which you and your family may find helpful. Have a look at our 'IN Touch' service as well. 

You will get there.

Take care,

Libby.


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#252 Why do i feel guilty.

Posted by Mark Sollis on 27 January 2015 - 05:31 pm

Hi Denise

 

So sorry to hear you are still feeling unwell - and Julie gives some good advice in seeking support from your GP

 

As for the guilt  - I perhaps understand how you feel as I have often felt the same. I am a survivor from 2008 and like you, am overwhelmed when I hear of others that have had such severe and often fatal outcomes from sepsis. I was one of the "lucky" ones. No (known) long term effects and no mental trauma from my 3 months in ICU. Lucky is of course not the right word - given that my life was saved by an amazing team of people - but I use it as there are so many others, despite the dedicated work of those same professionals, that just don't pull through ..

 

Not sure I can say anything to ease your guilt but you will know that the life you have now is a blessing. Having been through those tough times (no matter how insignificant when compared to some), there is no guilt to enjoy what life you now have. For me, I so now appreciate the time I have with my supporting family and close friends and for that I have no guilt. Hopefully through the UKST I can help others along the way too. I'm no therapist but maybe by bringing something new into your life will help focus on the future positives and help you move forward (have you tried parachuting? :) )

 

I do hope you see your GP to get the help and support you need - and thanks for sharing your story here

 

 


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#247 Local awareness raising

Posted by Hayley's mum on 27 January 2015 - 01:16 pm

I though I would share my experience of taking posters, leaflets and information cards to professionals. I attended the North West volunteer meeting a few days ago and decided to take some publicity materials to share locally. This morning I was due for a check up at the dentist, so I took some leaflets and cards with me. I gave them to the receptionist and asked if they could discuss them at their next practice meeting. The man on reception was very interested and the people behind reception all agreed this was something they could do. I then visited my local, independent pharmacy. I took a poster for the Manchester support group meeting and the leaflets and cards. The person on the counter was very interested and said Sepsis had been mentioned in relation to her Father in Laws death, although she didn't know what it was. They were very happy to take the materials and promised to use them. I then visited the practice nurse for a screening appointment and once again gave her a poster for the support group, plus a selection of posters and leaflets.  It was all much easier than I had anticipated and people seemed genuinely interested, so if you want to do a little local publicity perhaps have a go. 

 

Anne


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#100 Overcoming Adversity

Posted by Doctor Ron on 17 July 2014 - 03:23 pm

That's good to hear Dave, and the Guildhall is a mighty impressive venue! So glad you've come so far forward that you're able to help others now. R


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