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Discharge Experiences? - Research required by a Neurological Nurse


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Hi

I had my SAH in February 2009 and was treated at the Edinburgh Western Infirmary. There is a Clinical Nurse Specialist Interventional Neuroradiology in the department of Clinical Neurosciences. She was present in theatre when I had my coiling.

What should have happened is that she should have visited me prior to my discharge and gone over things with me. Unfortunately the system didn't work in my case and she only found I had been discharged after I'd been home for one week. However, she did write to me, explaining what procedure I had had, how many coils they inserted etc. There was some information on how I would feel and about how much rest I should be getting. Also she gave me a list of support groups, but they were all 35 miles away from me. She also sent me her business card with her contact details and I could contact her with any questions that I might have had.

Whilst this was very good, what I really needed was to speak to someone who had gone through this and see how they had managed. The biggest questions I had were, will I recover from this, how long will it take, has this shortened my life expectancy, what will my life be like?

I thought I would be back in my old routine in 12 weeks and couldn't understand why I still felt so poorly. It was my Gp that told me that it would be a long time, he has seen quite a few patients over the years who were recovering from a SAH. I know that's not the case with every GP. It was finally finding this website and speaking to others who were further down the road of recovery, that helped me. The people on here made me feel normal for the first time, that how I was feeling they had felt the same. I finally got hope that there is life after SAH!

A booklet with survivors stories and their rocky road to that survival would have been very helpful to me. I wouldn't have felt so alone. I also wish I had left hospital with a note of this website.

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Amy its so hard to narrow it down but the main would be:

6 months is not a good estimate for recovery, most of us take longer & a neurophsych told me anything up to 2 years was standard.

I wish they would put us in touch with another survivor so you know you're not alone & have someone to call, although not medically trained they could offer support.

that we have a brain injury & to expect the same side effects. I never considered I had a brain injury & when I went to Headway I was stunned to hear that my symptoms were exactly the same as those who had had other types of brain injury. I also think to tell other people you have a brain injury makes them understand what we've been through more easily although saying you've had a stroke is more understandable.

There are many many more things but those are the top three I can think of right now xxx

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Amy, you're not in a fit enough state to ask the questions on leaving hospital and that's the trouble. You would need to ask patients that are at least 6-12 months down the line as to what they're experiencing and that would be a lot more than 3 questions. xx

Exactly.....it is the follow up for up to at least a year. AS no one knows how we will turn out. It is like there has been no studies on SAH surviors. You leave with no clue and a year later are pretty much clueless. I assume no one wants to put ideas in to your head of side effects but at least when we say what is going on acknowledge that it is real.

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Amy, I'll come back to you with a list or it might be the start of another thread where members can list out what would have been helpful to know, including the practical issues :wink: .... I am many years down the line, but have survived a sentinel bleed, which basically went undiagnosed (38yrs old) and a 2nd SAH (42 years old) and the impact on my life with the 2nd bleed has been huge, as it has been to my family.

Are you in touch with with anybody at the University of Southampton? http://www.uhs.nhs.uk/OurServices/Brainspineandneuromuscular/Neurovascularservice/Neurovascularconditions/SubArachnoidHaemorrhage/FrequentlyAskedQuestions.aspx

They do have SAH Support Nurses, run a SAH support group, now on a weekend date and did produce a basic booklet on discharge, which was helpful.

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In terms of what the patient needs to know upon leaving hospital, I think it is vital that the patient’s carers are also included in the discussion. The patient will not be in the best state to absorb and retain the information, but in any case, even if the patient were to understand it; if the patient is returning to a family that do not understand, the patient will encounter many problems.

1. I understand the predicament of medical staff upon being asked how long recovery will take. You want to give us hope, but an estimate of 3-6 months (which is common advice,) is woefully unrealistic. I felt very depressed when my recovery was not complete at the 6 month mark and I became depressed. I think expectations need to be managed better. This estimate can leave us vulnerable to family / friends who then, quite wrongly believe that we are not trying to get better when 6 months has elapsed. I remember some friends trying to ‘push me’ at this point, confusing my fatigue for malingering.

2. I would have benefited from an immediate referral to psychological services, despite seeming to be ‘intact’; although part of the reason I felt ok was because I believed I’d be back to normal in a few months. I think we need professional help to guide us through the realities of recovery. We need to learn how to manage fatigue. Many of us are used to very busy lives and wrongly confuse resting for laziness.

3. Signposting us to organisations like Headway would have many advantages. My group offers counselling and activity days and I have made many friends there.

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I wish I'd been told...well what i think what would have been most helpful is some case studies of real SAH recoveries so I could navigate how I was feeling. Maybe a reading list, I would recommend some now. I got a good level of support overall but the following would have helped.

That I'd probably suffer from panic and anxiety at some point after discharge and some information and techniques for me and my family on how to help if and when this shows itself.

Some information on What symptoms are pretty normal and what aren't. I for instance got told a headache would be normal so I put up with excruciating head pain thinking that'd what I should feel like when it was in fact hydrocephalus returning, (not uncommon)but it was my GP who picked it up and ended up having emergency LP and blue lighted back for another 3week stay.

That I should seek counselling ( idid anyway) that I should see GP regularly ( mines been fantastic ) and that I should speak to other people who understood ( I was fortunate that I had two friends who had TBIs who helped me understand the pattern of head injury and I found BTG after 5 months) . These last three I would say are the most crucial but no one suggested any of them to me, I had to find my own way and lucky that I could. I really feel for people who are suffering this in silence and isolation.

:roll:

Oh yes, and I have had good support from Headway and calling the brain and spine organisation .

Edited by Daffodil
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Hi Amy. I share many of the points already mentioned here. I left hospital having no real idea of how seriously ill I had been. There was no support put in place. I was signed off work for 3 months & told not to drive for 3 months (I wasn't told I had to inform DVLA and I believe this happens a lot). I knew I'd had an operation and expected to recover from that and be exactly as I was before in a matter of weeks.

I was put in touch with Momentum/Transitions 2 years later. I learned a huge amount from them and slowly began to understand that I wasn't going to fully recover. They also told me about BTG where I have met others with similar issues which helps us feel that we are not the only person feeling isolated, scared & confused at what has happened to us.

I think one of the biggest problems is that you are not told you may never recover some of your previous abilities, like memory, cognitive skills etc. I realise that telling people this in the early days may stop them from trying to recover as much as they can as they might feel like giving up. But the realisation further down the line is a very difficult thing to come to terms with. I also think that there is a lack of understanding, including from GP's & Benefits agencies that these difficulties along with headache & chronic fatigue do not always get better and can be massively life changing. There seems to be a general opinion that after a year or two you are fine (for a handful of people this is true, not for everyone unfortunately). I think a lot of us have also found that GP's try to find a different explanation for the on-going tiredness. There seems to be a wide spread lack of medical information on the long term effects of a brain injury and until this is addressed I don't see how people leaving hospital are ever going to be fully aware of what they are facing.

Having said that, I do think there could be much more realistic information made available to patients and their families when they leave hospital.

Good luck with your research work.

Michelle

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I think it may have been said (lots of posts now on this)

But whateve your told on leaving the hospital - your not going to remember it (well most of us arent)

They use the term 3months if no improvement by then, then there isnt going to be any. Well thankfully in lots of cases mines included if that had been the point then I wouldnt be typing this or going out and stuff that I do.

Michelle, Yes Ronnie was told that I would never recover I just couldnt understand why not.

And in many cases it takes much longer than 12-18months much longer...

In a small way guess I was lucky the GP I saw when discharged done a stint on the Neuro ward but he was leaving the practice so didnt see him all that long isnt that so typical because after that it wasnt quite the same.

Well dont know if I have said what I wanted to or not read through the replies but as ever cant remember them...

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What would have helped me?

I would echo most of the points already raised. I desperately wanted to speak to someone who had experienced an SAH to help me understand what was happening to me. BTG has given me that, but I had to find it for myself.

I think the nub of the problem is that there is no real support in the transition from emergency care through to reahabilitation and recovery.

The phrase 'listen to your body' was frequently quoted, but in essesnce what this really meant was 'listen to your brain' and my brain was injured and struggling to help me make sense of all that had happened, and still is to a certain extent.

The brain is the core of our very being and the single organ that has the ability to help us find answers to all of our questions, yet at a time when it is injured and working hard just to keep us alive the majority of us are sent on our merry way from hospital and left to find our own path to recovery. It is no wonder that confusion, anxiety and panic attacks follow.

Good luck with your business case.

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Wem, you make a very good point.

I remember saying a while back that after the SAH I was presented with the biggest emotional / psychological challenge of my life; and the very I needed in such circumstances was a clear mind to steer me through the storm.

Unfortunately, as it’s the brain that’s injured – and it controls thinking and problem solving; it leaves the patient at a slight disadvantage.

Despite seeming ok when I left hospital, (I looked well after all!) I lacked insight and awareness, leading to poor judgements. I was irritable, depressed and anxious and exhibited mood swings. I was inflexible and hyper sensitive leading to friendships ending; and on top of this, I was expected to self -navigate through my career ending, hobbies finishing and social life collapsing. I didn’t possess the clarity of mind to deal with mundane day to day issues, let alone work through a life changing event.

Many of us lack insight upon leaving hospital and this can leave us very vulnerable.

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Wem I think we're all like that on leaving hospital I dont even remember leaving the hospital and going to the rehab hospital....so any info given wouldnt have helped.

But for those able the internet I couldnt use a computer didnt know how didnt have acess too I felt out there on my own.

So wished there was a meeting thing at the hospital & a day thing not evening...found out there was a group that meet first Monday of the month FAB short lived because by the time I found that out lots of time had passed (sorry not sure how long it was) & I wasnt able to attend - sometimes things like that you dont want, cant go to, dont need, in the early days, months few years but at some point it would be nice for some of us.

Not sure if I'm making sence there (he!he! Im renowned for that one:roll:) just trying to say it as I think...

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Hi Amy

I spent a month in hospital which I have no memory of, then I was transferred to rehab which I do remember and hated it there so much so that I demanded to get home after just a few days. Looking back this was a terrible decision as I was nowhere near ready to go home. I was extremely angry, agitated, distressed, sad etc and really terrified that I wasn't ever going to recover from this.

My GP was excellent and I continued to go to rehab as an outpatient but again I was very awkward and demanding didn't really know what to ask and how but they tried their best with me. I had a physiotherapist who came to visit me and an occupational health visitor, both were very good. I think at the very early stage I would have benefited from one professional( from the hospital where I was treated) who knew me and my case history, the extent of my bleed and who had all the information on what the outcome would be for me, someone I could phone when I became desperate or even someone who could visit me as I wasn't able to go out much at that time.

There is huge variation with recoveries depending on the extent of bleed, location etc and all our outcomes will be different. So someone with just a bit of general information wouldn't have been enough for me.

I needed reassurance in the first few days at home because although I was operated on and had made a good physical recovery, I was still convinced I was going to die from this and family etc couldn't really convince me otherwise.

I think to be discharged from hospital without good backup is wrong, I did get a leaflet I think, but I needed to hear the words and try and make sense of it all, I had so many questions.. I needed accurate and precise information about me and my case.

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Hi Amy,

The discharge info in the US is slim and none. What I got I found online and from BTG. I am at 18 months and 50 percent health, far from recovered. If I had to pick 3 things to be told it would be:

1. Fatigue will be a major daily issue. Brochure on how to manage it would have been great.

2. No work for at least 3 months. I went back at 2 months and it has slowed my recovery. The reason I went back at 2 months was because my neurosurgeon was too lazy to help or refer me and got rid of me as fast as he could

3. To have access to a follow up Nurse who could help with long term recovery.

And of course a mention of BTG and how this site can help survivors. Hope this helps.

David

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Hi Amy,

i am 5 year post sah and have no support apart from on here by all these fab people x x

when I left hospital I was told to just get on with my life and that was it x x

leading me to panic attacks and depression by the unknown and still am at that stage x x

i think more support when leaving hospital is very important x x I even offered to go to my hospital to speak to other survivors but they said no x x x

i really hope you manage to find further support for sah survivors x x

love

donna

xxxxxx

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  • 2 months later...
Hi all

Ok I am here to gather information about SAH patients experiences with how well they felt supported in hospital and on discharge. I am a neurosurgical nurse with a particular interest in SAH. I feel you guys get a bit of a rough deal with no dedicated nurse to advise you etc. So I am trying to put together a case for the trust I work in to create such a post. I am very interested in hearing about everyone's discharge experiences, good and bad. In particular if you have had access to a Speicalist nurse, how did this make a difference?

Really looking forward to your responses

Cheers

Amy

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Hi Amy , i havent been on here for far too long ( work is once again taking up a lot of my time - lucky me ! ) but ive just noticed your post .

This is an area im currently involved in on a voluntary basis with a health group in North East Derbyshire . In essence ive been a little 'SAH-centric' ( sic ) with my reasons for getting involved in the way that i have - id like to think that my efforts with the group can go some way to ensuring people like ' us ' ( fellow SAH patients ) dont have to go it alone in our recovery once we are discharged from hospital . I dont want people going through what i went through in other words .

I know now that the overwhelming majority of the worst i went through during my rehabilitation seems to have been related to anxiety .... at the time i had absolutely no idea what it was and didnt know what to do for the best . Councilling helped me enormously and id like raise awareness and promote personal links to help bridge the gap there is between discharge from hospital and awareness that help exists and where to get it !

Do you still post/view the site ? Can we have a quick chat in order to ascertain whether or not we can help each other ?

For the record , i was treated for my SAH in June 2012 in the Hallamshire and may i say thank you to you and all of your colleagues for the outstanding treatment i recieved . I have to say that the level of compassion , care and overall professionalism exhibited where i was treated ( N1 ) was simply breathtaking......thank you .

Kind Regards

Nick

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