Discharge Experiences? - Research required by a Neurological Nurse

[AVLanigan]

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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Edited February 14, 2013 by Karen
Title/Forum

[Sandi K]

Hi Amy, welcome to BTG. I'm in Canada but there is a common theme with most BTG members regardless of where we are from. Once we leave hospital there is really no support. We are left to search the Internet if we are capable and then once we find BTG we finally learn about what is happening to us.

More will come on with more details. Good luck to you, I think this is a very worthwhile objective you have.

Sandi K.

[AVLanigan]

Hi Amy, welcome to BTG. I'm in Canada but there is a common theme with most BTG members regardless of where we are from. Once we leave hospital there is really no support. We are left to search the Internet if we are capable and then once we find BTG we finally learn about what is happening to us.

More will come on with more details. Good luck to you, I think this is a very worthwhile objective you have.

Sandi K.

Hi. Sandi

Thanks for your speedy reply. SO did you personally feel prepared for discharged? Did any nurse ever go through how you may feel and comman questions with you?

[Louise]

Hi Amy warm welcome.

Im from Scotland but I do think this problem is across the board no matter where you are, your discharged & really you have to find out things for yourself ok I managed to get a few leaflets from the ward from the Brain & Spine Foundation gave information but not really either what I wanted at the time or could really understand either at the time.

At the time I was discharged I didnt have a computer, didnt know even how to use one, I think I had the feeling of fending for myself and being very alone....

[AVLanigan]

Hi Louise

Thanks for sharing with me. This is exactly what tends to happen. Ward nurses are so busy it really is difficult to get the time. A lot of written information does seem to be totally inappropriate, I am currently trying to rewrite ours. I hope you have found all the information now.?

[kempse]

Hi Amy,

I was treated at the Royal Hallamshire following my sah in 2008.

Definately a lack of information on discharge. The only thing I can remember being told was not to search American websites for information as I would scare myself! I was also told that I could drive as soon as I felt able (no mention that I had to inform DVLA and get their permission). Obviously I was still searching information a year later as that is when I came across this website which, through personal experiences of others, has been the most help. I was given a ' Brain and Spine' leaflet at the Hallamshire following my 2nd coiling a year after the bleed, but I was asked if I could return it when I'd read it as they were in short supply. Access to a specialist nurse afterwards, to be able to ask questions or talk over concerns would be ideal.

I think, therefore, that what you are trying to achieve is a long awaited, but very essential and extremely worthy cause - I wish you well in your venture.

Sarah

[DawnS]

Hi Amy,

my memories of that time are rather blurry, but I do recall that I was desperate to get home. The HDU at John Radcliffe was extremely noisy and there were people in a ward downstairs who screamed very loudly and at length. I should add that the sah has left me with extremely sensitive hearing, so perhaps it wasn't really as noisy as I recall.

Nobody discussed with us what it would be like living with sah on getting home. We were told that an OT would visit us at home, someone phoned my partner to ask if I was managing to get in and out of the bath ok and that was that. I have never spoken to a neurologist since the day I was discharged. When I went for my 6 month chek, the only person I saw was the radiologist who did not discuss anything with me at all and it took several weeks to receive my 'results'. This was a letter telling me I should go back in August of this year for my 2 year check. I assumed as there was no further info, my MRA was ok.

I contacted Headway myself after receiving advice on this site. This took a long time to arrange (13 weeks if I remember correctly) because I had to be assigned a social worker first. Perhaps if this has been explained to us when I left hospital, we could have started the process sooner. By the time I was allocated a social worker and my funding was approved, I'd been home 8 months and was already well on the way to recovery, in fact I got my driving license back the same week.

I have recovered well since I got home and am now working full time once more. I do feel that more information would have helped both my partner and myself. If it wasn't for this website, we'd have been very much in the dark. I am very pleased with how well my sah was treated, I had coiling but the aftercare leaves a lot to be desired.

[Karen]

Think that I would advise any health professional that is going to write something about recovery info to actually recruit a SAH'er/s for input as well, as they've been through it. Over the years, I've seen the same topics crop up, time and time again here.

It's a postcode lottery as to what hospital you're treated at, as to what recovery info you're given or whether a SAH support nurse is available to you, and surely with the NHS in the UK, SAH info/aftercare should be the same for all neuro's hospital and that's something that I would like to see rolled out as standard. xx

[Gill C]

I was treated at Wessex where we were fortunate enough to have a nurse specialist (two currently) but although we were given the leaflet about sah it really isn't very informative.

I found BTG very soon after my op & found it to be a wonderful place where I didn't have to explain how I felt (the fatigue, the odd head pains, mood swings etc) & where I didn't feel odd or weird experiencing the things I was feeling. The leaflet gave the basics & implied (as the sah nurse specialist did) that recovery was around 6-12 months but as most of us will say this isn't very realistic!!

I contacted Headway too although it took me several goes to actually pluck up the courage to go & be assessed. That in itself was a revelation, talking to real people about the real issues that are common factors in all brain injuries. I suddenly realised there was a reason my brain was struggling & on one of their courses discovered which part of the brain did what so I could pinpoint my problem areas & say ' this is where the damage is, this is why I'm like this'.

Sadly with the funding cuts (our) Headway are no longer running these courses but now Wessex are running support group meets every couple of months & that has been a very positive experience.

I wish more hospitals did a 'buddying' system so that you can contact a survivor who has been there & done that before you. Having someone who can tell you it does get better is a ray of sunshine when you are discharged. I had nothing, no social worker or OT or social worker. I guess that means I am a lucky one not to be too badly affected but its a very scary prospect after 24/7 care to go home to nothing.

I also think partners & family are left even more out of the loop & its very hard for them to adapt to the changes we are experiencing. More needs to be done for them.

[VanessaW]

Hello there

when i was getting ready to be discharged from QMC in Nottingham, the consultant told me there was a specialist nurse I could talk to and to ask the nurses on the neuro ward for details. When I asked about this and for any support groups, they told me there was no such thing and I would have to find something on the internet!! So I went home from hospital with no support whatsoever. It was only when I went to see my consultant for a follow up 6 weeks later that I asked him again and he said there are definitely two nurses you can talk to and eventually his secretary gave me their phone number. Also there is a support group round the corner from the ward I was on. I was not impressed by this shambles I must admit. It's such a shame that the support was available, because I really could have done with it, but none of the neuro nurses knew this.

best wishes

Vanessa

[MaryB]

Bless you Amy!

I am in the States, I did have my own nurse but for me I was in a daze most of the time and never fully understood the magnitude of any of this until months if not a close to a year later. I still cannot tell you exactly where my bleed was as my neurosurgeon found it on the scan in "a rare part of the brain". I really for months was not even fully prepared for how long this was going to take. I also have copies of most of my scans. I have learned more from reading. I think them taking a brain diagram and circling the areas etc is what I needed most as I am visual and we are all forgetful with memory issues now as well. A page or book of sort explaining the areas that things happened. I had a stroke and was misdiagnosed as well at first.

Never did anyone say it would be months and months before returning to work, that I was lucky to be alive, or could I comprehend at my 3 month MRI that I had a mengimoma tumor as well. I knew they had to do the flap dissection and it would take 3 months to heal as if I had brain surgery and I heard them make the mistake and felt the horrible pain during the angiogram that cause me to have the dissection done. But they knocked me out when I started screaming. I heard the mistake clearly and the conversations going on and later my surgeon who I love:) explained it to me.

I think after you leave the hospital you need follow up phone calls and some direction. I just at 15 months can tell how fast a car is going before I pull out. I of course would wait until all the cars were gone first. But the healing process is long. I feel as if we are ignored as no one knows the answers. I had no hand out on brain injury etc… I knew it took me 15 minutes to look at all my white socks before I could pick out a pair for months. I could not process cooking a meal for almost a year until I was put on Ritalin. I sought out my doctors and went through a few neurologists and now I am seeking some therapy to pull the last of it together but when I talk about noise sensitivity he compared it to the garbage truck coming and dumping the dumpster. AND I had to correct him it is an over load of sensory and I feel like all noise is so much louder than it is. I have a tender head and no one can answer that, it seems as if even to say “Yes, that is something people have experienced in the past but we do not know why”. Would be better than us thinking we are crazy for mentioning it.

This is my input. Maryb

[AVLanigan]

Wow, thanks so much for all the responses. Has anyone had a really good experience as a result of a nurse Specialist?

[VanessaW]

Hello

Perhaps I should have added that shambles aside, once I found out their phone number,the QMC neurovascular nurses themselves were very good indeed. I have phoned them on several occasions to ask about various symptoms, medication and memory problems. Usually they can answer my questions, but if they haven't been able to answer, they have passed the query onto my consultant and come back with an answer. It's nice to know they are there.

best wishes

Vanessa

[Winb143]

My Surgeon was Great as he saved my life, but after treatment I am told was poor.

My daughter and hubby would not leave me as I was often left with a full catheter, and when my daughter told a carer the carer said "No it isn't I've emptied it" and my daughter saw her say "Jezus" and the carer tutted. Nice !

Good job I was out of it ! as I had ventriculitus/Sepsis and was in a coma.

After care I do not remember either but was told My Family had to fight for everything.

Faeces under nails, bed sores Surgeon had to tell them he didn't want it to get bigger etc

Hospital OT's gave up on me and said to my hubby "She might be better off in a home. Good job my Husband said "No

we will look after her"

Surgeon had an assistant who was very helpful to us.

My aftercare well !! I have done better alone with the help of my family, One home OT hurt my groin. I just hope that not all get treated like this on NHS

I was told I may never walk again and at a meeting a man said to me "What makes you think you will walk again"

I can walk to the toilet and back so onwards and upwards and I will walk when back stops hurting.

I wont mention the MRSA !!

So aftercare even in hospital and out is nil, sorry to say this saddens me really

Regards

WinB143

[Lin-lin]

Hi.

Thank you for considering us for your research.

My treatment at hospital when I had the SAH was superb. I was in hospital for five weeks as there were complications with hydrocephalus.

I left hospital with no intensive follow up care. My next appointment with the Consultant was to be seven months after discharge.

Mental fatigue was my biggest problem, together with chronic insomnia, inability to multi-task, personality changes, a feeling of being detached from others and anxiety. There were times when I thought I was going crazy and certainly behaved in ways which were problematic. Thankfully, I have a supportive family who were able to look after me, but I dread to think what would have happened had I been more isolated.

Things continued to spiral and I believed that I had to push myself harder to get better. This created cycles of crashes and deeper depression with a sense that I was failing. I did stupid things such as denying myself naps in the day, wrongly thinking that I had to push myself through the pain barrier to get better. This impacted a lot on my emotional state as I was beyond fatigued.

Things only started to get better when I contacted Headway, one year after my SAH. I was not signposted to them by health professionals; I just happened to see their website and emailed them. I did not think that I had a brain injury at this point – but what the website said about brain haemorrhages seemed to apply to me.

At Headway I was offered counselling and things became very clear to me from then on. I learnt about brain injury and how to manage fatigue.

I think a lot of the problems I encountered in my first year could have been avoided had my family and I been better informed of my circumstances. We were left to our own devices and we made mistakes.

I know you asked for good experiences as a result of a nurse specialist, but I never spoke to one. I think my initial recovery would have been a lot calmer had I received the proper intervention.

[Daffodil]

Hi. Good thread this and Definatly shows a need for some consistency in level of support on offer.

I have a good story to tell. I have two neuro specialist nurses and a hydrocephalus specialist nurse. They have been assigned with me since i was admitted and were amongst the first to speak to my family when I wAs most poorly and explained much to them. During my stay for the SAH which was for 6 weeks i saw one or more of them every day. On leaving they gave me a direct line number , on which have called them frequently , a mobile for more pressing questions and an email address from which questions are always answered. I have had 3month and then 6month clinics with them and whilst they can't answer my every question they have given me much reassurance. The support by this nurse specialists team since my discharge has been invaluable, in fact when I was readmitted requiring prompt attention for return of hydrocephalus in july We were struggling to get a problem with nursing on the ward sorted. I called my nurse team from my bed, dreadfully ill, and they came and took charge and basically made sure I got the medical attention I should have been receiving but wasn't. I know I get listened to and have a medical person who knows me and my history who can assess any symptoms and help me act. An example is Last week I was pretty grotty. I emailed them my symptoms and they called and said i should come and see them. They met me on arrival, checked my shunt setting, asked how I was, took bloods and then arranged for me to have scans. They spoke to me about my results,discussed what we did next and then called me the next day to follow up. I WISH all of you had access to this. It's not been perfect but I cant think what I would have done without this. I feel very blessed I was in London the day my head let go for the access to the care it gave me. That was my lottery number coming up.

[Gill C]

As far as the nurse specialists they have been fab when I needed them but I did feel I 'wasn't really ill' & I knew they were busy with patients in the wards so I didn't really ring them in the early days. I did ring to try & get help getting my licence renewed as I didn't get any joy from the Registrar.

Having said that my registrar gave me her email address at my 3 month review & I did email her with a couple of questions to which she did reply. The timing of my licence drama happened when she was on surgical nights & on leave so I got very frustrated & upset with the delay.

I know I never saw any scans until my 3 month review & it wasn't until recently (after seeing a neuro surgeon at the support group meet) I had lots of gaps in my memory & the neuro nurses got my notes & helped me fill them in. I my asked hubby about those times I couldn't remember & he wasn't told anything either so was of no help.

I know we are very lucky to have nurse specialist & I wish I'd made use of them earlier but I've always been a person not to ask for help, hence leaving Headway for several months before admitting I needed their help!

[MaryB]

Just in case anyone in charge of this in the US is reading this I want to add..I give my cell phone number out to clients at least twice a week with a very ill animal that goes home and I am uncomfortable with the owner knowing what to do or what is happening. So at least a human nurse or someone with knowledge of brain injury could call and see how it is going and answer some questions. I am sure it would be benefical for the Neuro dept to knwo what kind of issues people are having. At the veterinary clinic we do follow up calls as a rountine with any ill animal etc..

So this is why I am am so confused with human medicine. Just needed to add that!! Thanks

[Wem]

Where do I begin?

The emergency treatment in hospital was excellent. I have very little memory of it but I am alive today and for that I am eternally grateful.

I was in intensive care for 1 week, then HDU for a few days and finally moved to a general ward for a further week. Whilst I was on the general ward the physio and occupational therapist set targets for me to achieve on almost a daily basis. I realise now that this was in order to complete the discharge assessment.

When my discharge day arrived no-one sat either me or my family down to give us any kind of guidance on what to expect when I went out into the big wide world. I even had to go find the ward sister to see if I needed to take any medication home with me - and I was handed a plastic bag of medication! No guidance on what I had already taken that day, the only guidance given was to drink plenty of fluids.

I went home thinking all was well in my world and all I needed to do was take my tablets, build up my strength and I would soon be back living life as I had before! In fact the ward sister said I would probably be able to return to work within 2 months.

When I got home my family realised that I still had staples in my head from my first operation to relieve the pressure on my brain. We rang the hospital and we were advised they had forgotten to remove them and could we go back in to get them removed!

I was given a telephone number for the ward if I needed assistance but whenever I rang they told me to either go to A&E or speak to my GP so I very quickly learnt there was no support available from the hospital.

....and so it contnued. I tried to get physio and occupational therapy support from the local NHS authority but found the help was limited and all it really provided me with was a number of handouts on fatigue management. I was even told by one of the health professionals who had only spoken to me on the telephone, that there were plenty of patients that needed their help far more than I did!

I tried Headway and they wanted £52 a week for a session with an OT, who on my first visit promptly walked me across to a busy shopping precinct and sat me down in an open air coffee shop to conduct my first session in public, with all the associated noise that comes with these coffee shops! It went downhill from there. Various appointments were cancelled with requests for me to re-arrange things at the last minute which was not workable for me as I had no means of transport and was relying heavily on my family to take time off work to accompany me on these trips.

So Headway and I parted company.

My GP practice has been very good but I had to initiate any follow up visits with them and for a long time I was a lost soul trying desperately to come to terms with everything that had happened to me and find my way in life.

5 months ago I was referred to the psychology team for counselling for PTSD, I am still waiting for my first session.

I still haven't found my way in life, still suffering from chronic fatigue and the associated symptons that seem to come with it but I don't think I have ever felt as lonely or isolated in my life before, as I have from this whole experience.

I will get through this, because I am resourceful and a determined character and I am sure that there are plenty who struggle a lot more than I have.

Sorry ...........you asked the question.

[AVLanigan]

That's a great point. So to everyone who has kindly posted, what are the top three things you wish your nurse had told you before you left hospital?

[AVLanigan]

On behalf of the NHS I am so sorry you had a terrible experience, these are exactly the things I am trying to prevent, I firmly believe this new role would make a huge difference

[Karen]

I think that the majority of us have felt let down with the lack of after care/realistic information post SAH, with or without a SAH Nurse ... I'm still finding it frustrating at nearly 8 years on when I have problems and need to consult my GP or see a Consultant from my local hospital who would prefer to obviously go home for his tea, rather than spending a couple of minutes looking at my notes and who doesn't even know why I'm there ...absolutely Jokesville in my books and I've kept the letter that he wrote to my GP. It would be funny if it wasn't so serious and even my GP was disgusted with the reply and followed it up. Not sure of the outcome, as I wouldn't want to have seen this guy again anyway and hope that I never have to in the future.

However, I can handle "stuff" a lot better at this stage rather than the early months or years, I still have a neck left on my aneurysm and an abnormal shape artery on the other side of the brain, which I'm being monitored for, but I feel for anybody in their early months/years post SAH and that's why this site is still in existence. I would happily shut it down if recovery needs were being met across the whole of the UK.

[Karen]

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

[myratas]

Hi AVLanigan

Welcome to BTG, I was treated at the Royal Free Hospital in London, I can't remember much until near the end where I was discharged. I did not receive any information regarding SAH, my discharge papers and medications were handed to me and the rest I had to find out through internet and from BTG.

[AVLanigan]

Karen

I understand your point. You are years down the line so what do you wish you had known? I am also aware that it would be much more than three, but wanted to keep things simple. I don't mind how many there are!