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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   413 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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#386 Recovering from sepsis

Posted by mmoo on 28 November 2015 - 07:00 pm

Hi Gillianflutes,
Take your time, and go one step at a time.
It has taken me 7 months to listen to my own advice, so I do realise it isnt that easy.
Like you, I was extremely active, healthy and on the go non stop. All this changed in May and since then it has been a long, painful uphill climb to getting back to the way I was before. Although I am still nowhere near my former self, things have improved and continue improving. What I have had to accept was to give in to the tiredness and just listen to what my body was telling me. Earlier on in this journey I couldnt do anything. My main "activity" for the day would be having a bath. Today, I am back at work part-time and this past week have just upped my number of half days worked from 4 half-days to 5 half-days. Even the addition of an extra half day has me feeling more tired than I have been. I would have laughed in the face of anyone if they had said adding a half day of work to an already meagre working week was exhausting, but there you have it. Just reading that going back to work progressively leaves you lying in bed for the whole weekend feeling exhausted and pathetic - strangely enough made me smile - been there, done that. I'm not laughing at you in any way, but am laughing at myself as I too have felt very very very pathetic at times (this very afternoon, in fact).

Are you able to work from home at all? I've been lucky enough to eliminate extra factors that exhausted me when I first went back to work, getting dressed in the morning, driving to work, walking around the building going to see different people, for me, just added to the exhaustion. I hope for your sake you can maybe try working from home a little. I really found that helped. Also, when you feel good, try not to push yourself too much. Again, I know this is terribly hard to actually listen to, but if you are still so tired on weekends maybe you are doing too much.

I hope that my message makes you feel less alone. Although I havent been on the forum in quite some time, just reading that there are people out there who understood what I was experiencing helped me enormously. I would like to think I have always been a well-balanced person, but i nthe past 7 months I have sometimes felt so alone, so lost, and so so so knackered that I often thought my weird an wonderul symptoms were because I was completely insane. Thankfully when I got in touch with the UKSepsis trust, despite living in France, I got the support and all information I needed not only to reassure me I was not totally certifiable but they also to armed me for what has turned out to be a long battle. Without the UKSepsis trust I honestly think I would have completely lost my mind.

Take each moment as it comes. Rest when you feel the need to rest, and try not to compare yourself to how you used to be. Surround yourself with peope who understand, and if there are ones who dont, simply dont let them influence you too much - you have enough of a battle on your hands.
Although I know very little of your personal battle with sepsis, I can say for myself that there was a turning point after about 6 months. I wont pretend thzt fireworks went off, but something changed. As I say, there are good days (a couple all in one go at the moment, and it is WONDERFUL), and then there are days where things are more difficult.

Take heart that although you might feel alone, you are not.

All the best and I hope things look up for you soon

Michelle
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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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#1031 Raising awareness within the NHS

Posted by red squirrel on 19 February 2017 - 01:57 pm

Members have recently posted about how they can and do raise awareness within the NHS regarding sepsis.this is for anyone who would wish to do the same but are unsure about how to make a start.You dont have to be a patient/survivor to do this, although patients are encouraged.

In the first instance you can sign up to your local hospital news letter either by post or email this will inform you of any new initiatives taking place and how you may help.

Most hospitals now have a dedicated patient and public involvement department and in some cases can be contacted directly.where you could help in areas such as.....

 

Become a patient leader

Take part in projects and initiatives

Joining the register of readers to review patient information leaflets

Take part in decisions that affect how services operate

Join a patient- led assessment team

How to plan and provide services

Help junior and interns become more patient aware

take part in how to develop and change the way they provide services

Become a secret shopper for the hospital.

 

there are others also but they vary by region and they are not all sepsis- related

iv done some of these myself and have found them on the whole to be immensely rewarding,

Recovering patients may find some of these activities a little tiring as some may involve  a whole day visiting wards,  form filling and travel so pace yourself.some hospitals can arrange travel in certain circumstances also.

 

 

regards Red


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#999 Post Sepsis Syndrome

Posted by MarkDUK on 09 February 2017 - 09:48 am

That's interesting Supertractorman. How did you get involved in the Patient Bank Programme? I see real benefits in this.
Mark
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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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#854 1st World Sepsis Congress

Posted by MarkDUK on 06 November 2016 - 12:43 am

I found the following very interesting. Real survivors being given an opportunity to tell their stories and concerns for our carers.


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#744 Benefits!

Posted by Leila on 12 September 2016 - 06:30 pm

Ps forgot to say, I wouldn't worry too much about trying to explain post sepsis syndrome, the focus for both pip and ESA is on demonstrating how your condition effects your ability to work (ESA) or to complete the task of daily living/moving around (PIP). Medical evidence to support your claim would be helpful. Be prepared not to score enough point on the initial assessment, the DWP often refuse or give low points on assessment (ATOS and CAPITA are renowned for dodgy assessments to meet their targets). Do ask for a mandatory reconsideration and then go for an appeal to a tribunal of you are initially refused. The tribunal is independent and there is a good chance you'll get an initial decision overturned if you have good supporting evidence to show how you meet the criteria. Keeping a daily log of how your condition effects you can also help at the appeal stage.
Good luck
Leila
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#693 What is post sepsis syndrome

Posted by red squirrel on 23 August 2016 - 06:57 pm

I v been reading around and found some interesting stuff on post sepsis syndrome (PSS), Its taken from two studies one recent (2016) one not(2013).So what is it.

 

Post sepsis syndrome is a condition that effects upto50% of sepsis survivors they are left with physical and/or psychological long term effects such as...

*insomnia,difficulty getting to sleep or staying asleep.

*nightmares vivid hallucinations and panic attacks

*disabling muscle and joint pain

*extreme fatigue

*poor concentration

*decreased mental cognitive function

*loss of self esteem and self belief.

however this does not mean we will experience all of these effects for some of us it may be none,for others it may be one or all.i feel i can identify with most of them,maybe not all of the time,on the same day .the  john hopkins study went on to explain that many sepsis survivors report symptoms of post traumatic stress disorder (PTSD).and that these risks are higher for people who are admitted to intensive care.It went on....

What can be done about PSS.

post sepsis syndrome must be recognized by doctors and health care professionals so that patients can be directed to the proper resources which may include referral for emotional and psychological support,counseling,cognitive behavioral therapy or assessment for physical support such as physical therapy.

awareness seems to be key

what are your experience of PSS.

 

kind regards ian


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#547 More awareness for surviviors

Posted by Lesley-Anne on 14 April 2016 - 07:27 pm

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
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#519 Relatives of sepsis survivors

Posted by ClareL on 01 April 2016 - 11:07 am

I am married to Marc, a man who was perfectly fit and healthy until June 2014 when he suffered from Group A streptococcus and (extremely long story short) ended up with sepsis and fighting to survive. He spent 3 months in hospital, 45 days of which were in ITU and had to recover from being put into a medically-induced coma to help him survive when all his organs were shutting down. He has since had to learn to breathe again, walk again and recovery has taken so much longer than we could ever have anticipated. We are now 21 months from his initial hospitalisation and, while things are so much better than they were, they are still far from normal.

 

What I find difficult is other people's assumptions that he should be better by now, and that people have no clue as to what he is and isn't capable of managing. What is a very simple task for others can be a massive challenge for him, and we are constantly re-evaluating and readjusting our lives to incorporate any difficulties he is having, while trying hard to remain as 'normal' as possible.

 

We have two children aged 6 and 8 who have gone through the whole process with us and most of the time are so considerate of their dad's needs. Reading some of the experiences on this site makes me wish I had been more aware of the Sepsis Trust earlier - there are so many others whose symptoms sound the same as Marc's. I have only recently begun to come to terms with what has happened to us all - I consider that we have all been affected as a family unit - and started to write about it as a way to process it all. I wondered if there were other close relatives of sepsis survivors out there who feel similar?

 

Thanks


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#385 Recovering from sepsis

Posted by charlieturtle on 22 November 2015 - 04:05 pm

Hi everyone, reading what everyone is going through has given meaning to the way I have felt these last few years.i never had an explanation to why I have been feeling this way. Every day feeling like I will never be normal again, I feel so down knowing I am letting my family down, not being able to be the mum and wife I should be, feeling useless and a moaning all the time burden.is this it? Is this how my body will be now? You guys are so optimistic and hopeful.you are an inspiration. Thank you, I would love to hear how everyone came to this point and the struggles you are all overcoming.
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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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#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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#1115 Sepsis Support Groups

Posted by MarkDUK on 12 March 2017 - 07:55 pm

Thank you to everyone who came to our meet up in York today, with special thanks to Larry for making the journey t'north.
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#1064 Recovery

Posted by Palmiter on 28 February 2017 - 07:12 pm

Hi Dave!

It has been 7 years since my encounter with SEPSIS. After 4 months in the hospital and 3 months of physical rehab,I can honestly tell you IT DOES GET BETTER! I can remember when making my bed was the "project" of the day, and after that, time for one of my many daily naps.
Currently, the only side effect that still lingers is occasional leg and foot pain. A couple of over the counter pain pills usually takes care of that. The main key for YOU at this conjecture is to be PATIENT with yourself. You body has been to hell and back and will need time to heal.It is important that you realize your limitations now will only improve from here on end. Now, go ahead and take that well deserved nap :)

Bob L.
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