Consistant Aftercare?

[rince]

As some of you might know one of the things that bug me is the lack of consistency in not only the care we receive but the advice as well. It seems that if you poll 15 medical professionals about anything in the ongoing life that we can expect to live you'll receive not only different opinions but radically and diametrically opposed ones as well. From something as simple as whether or not you are "entitled" to receive a flu jab to something very complicated as whether or not you can have an MRI scan it doesn't seem to matter what the topic the diversity is quite staggering.

I believe that we as a "group" need to make our voices heard to those who are giving the advice. Whether that be via the NHS or direct contact with EVERY Trust and Health Authority, something needs to be done. What I want to see is a simple list of advice being given to every one who needs it, the Wessex Neurological Centre in Southampton has produced a very good guide and that's a good starting point in my opinion. I think that not only the people who've undergone the trauma of SAH and their close relatives need to hear what really happens post hospital release but the GPs as well. Neurologists it seems are not the sort of doctor to be readily approachable by either you and I but by our GPs, the lack of information flow in some cases is quite scary.

I know I've been "lucky" in not only the diagnosis by the treatment and aftercare but even I've had some really silly things happen to me! I was refused by my local MRI unit because they "know that people who have been coiled can not have MRI scans"! I had to get my consultant to sign a waiver!! That staggers me that I may not of been the first person to be refused, you can't have a policy like that without refusing to treat people who need it.

There is a huge amount of ignorance out there and if we don't try and correct it who will? I don't know exactly what steps to take next but I'm sure someone out there will.

Thanks for reading.

Scott

[donna79]

Scott

I think it is a fantstic idea to do something with regards to aftercare from an SAH.

I am happy to offer my support in anything you need help with like i'm sure many others will.

I want to offer support to future SAH sufferers and was thinking of composing something in which the Hospital could give out to patients who have had a SAH when they leave hospital.

I mentioned this to the support group at the hospital where I go and they said that they have offered that before and the hospital declined.

It worries me to think that other SAH sufferers are going through recoverey thinking they are alone when I am more than happy to be there for them and tell them about this wonderful site also ( because feeling alone is very scary but something we have all felt/feel.

Please Scott if you think of anyway we can be heard I WILL help.

love

Donna

xxxxxx

[myratas]

Hi Scott

I totally agree with you and offer my support you where ever I can.

Myra xx

[Guest Beth1957]

Hi Scott

I totally agree with you and offer my support you where ever I can.

Myra xx

Same here, Scott.

[MUTTI]

IT SOUNDS LIKE MAYBE THE FIRST PLACE TO START WOULD BE THE HEAD NEURO AT THE HOSPITAL PERHAPS SOME ONE COULD PUT SOMETHING TOGETHER FOR OUR WHOLE GROUP?

IT IS THE SAME HERE IN USA.

EVELYN

[jess]

Yes I would be prepared to offer my support also. Jess.xxx

[ninja]

Hi

I'm with you all the way.

John

[Nurianna]

Totally agree. Seems like problem crosses geographical frontiers.

Down here, the impression I get is that the right hand has no idea what the left one is doing. I have to see a few specialists and I always carry my hospital record with me because they don´t usually have a copy for the first visit. And it´s all in the same computer system. I have to be vigilant for procedures, prescriptions and advice, and usually I double check it in case of doubt. Eventually, I always get where I have to but it´s tiring to have to do the homework myself, and it feels like the whole thing is unglued, inconsistent and lacks proper coordination.

There is a department here called Attention to the Patient where you can go and complain. It´s very effective, the people are nice and it usually makes a difference but I am tired of having to organize things through them. It takes its toll in time and waiting. There just doesn´t seem to be a check-list after hospital. I have picked up more (and better) ideas on this website than from any other place.

You, fellow sufferers are my reference to keep pointing in the right direction!

Love,

Nurianna

[Skippy]

Hey Scott

Count me in - will help wherever and whenever I can.

It's something that is definitely needed - I did't know what to expect when I came out of hospital - luckily my sister in law knows the Neurosurgeons at QMC in Notts and asked one of them for advice - he looked at me scans and told her to tell me that everything was fine, because of my anuerysm being near my emotional sensors in the brain, the way I was feeling was perfectly normal - I felt like I was going completely crazy. SAH survivors need a little guidance to know what to expect immediately after as well as the long term.

I'm here whenever I'm needed.

TTFN

Sami x

[Karen]

Hi Scott,

I can only agree with what you've said and I see the same old problems and issues coming up on this message board, as new survivors start their recovery journey.

When I had another scare a year after this SAH, my local hospital said that they wouldn't do a MRI, because of the coils .... I had to ask them to check with Wessex Neuro, as I'm pretty sure that they would have sent me away without doing the scan and they certainly didn't believe me, when I said that I'd already had two MRI's post coiling. It only took a phone call to sort it out and a bit of a delay, but surely to goodness, they should have this knowledge at their fingertips....

I can also see that we've had the subject of clips being discussed and what metals have been used and if they can go into a scanner, but again, surely the patient should have left hospital, with knowledge of this info?

I am looking to start a new project at some point in 2009 ..... Myself and some other members (who individually approached me at the end of last year) feel that we need to tackle the key recovery issues more thoroughly on BTG and by trawling through the exisiting posts, pull this information together. I'm not sure how I'm going to do that at the minute, whether it's going to be forum based or on the homepage, but it will probably take quite a while to do.

It would also be interesting to hear from each member, what recovery advice would have helped them? What issues they still have....physical and mental? What questions they would like to ask their Neuro Consultant if they had the chance.

It would be good to see some practical questions and answers, like "is it safe to fly?" .... "is it safe to swim?" ..... "what medication should I avoid?" .... "can I have a massage?" ...... "can I drive and do I need to inform my insurance company?".....

Anyway, I could go on and on.......but just taking a break for a while and will then make a start...

Well, as for making the medics aware of the problems that we face, then I wouldn't have a clue on how to begin to tackle it, but yes, something needs to be done.

I believe that some of the SAH support nurses were very interested in Alison Wertheimer's book, A Dented Image, but whether anything will come from that, I don't really know ......

Scott, if you have any ideas, then please feel free to contact me ....... Do you still attend the Southampton support group?

[bogbrush]

Something definitely needs to be done, but where do we start? Let's start with GP's

I've been doing some rough calculations on SAH in my area - Borough of Basingstoke and Deane - and from what I can establish there are around 13 cases per year for a population of 152,000. That's around 1 per month. There are aproximately 90 GPs in the area so assuming even distribution, each GP will come across a SAH patient once every 7 years or to put it another way around 4 or 5 in their entire career. This bears out something I read quoting a similar figure. So, the problem from a GP point of view seems to be one of education. It's not something they regularly come across, so have little or no experience of recovery or aftercare.

My own GP has been quite good, but I'm thinking of writing a letter to my GP practice manager in an attempt to highlight the situation and try to find out if my figures are anywhere near accurate. I will post here anything I write.

Like you Scott, I was treated at the Wessex Neurological Centre and have a copy of their excellent guide written by one of their SAH support nurses, Lesley Foulkes. It is available from Amazon, price £2 http://www.amazon.co.uk/Subarachnoid-Ha ... 231&sr=8-7

Any help I can give pulling information together etc, I would be happy to do so.

Regards

Keith

[Karen]

Keith/Scott,

Perhaps we need to put our heads together? ..... may be, if we can collate enough questions, answers, views from BTG, we could compile something over a period of time and send it off to the relevant bodies ..... but, all suggestions would be greatly received, as to how we tackle this and what questions to ask here? .....x

[Louise]

Dont know if this is on the lines of whats been said, but when I turned unwell, the GP said it was an inner ear infection my cousin dissagreed, and he reluctantly called an ambulance, after they did cpr twice on me they were en-route to one hospital but the quick thinking of the medic he told the driver to go to the Western General which has the neuro unit, that man saved my life.....

When rehab got me a place at college my OT phoned me up at the end of the first week havent heard from her from that day to this

Then a few years later when my Dad died I was having a hard time so I phoned up the phycologist to see if I could go see him just for a chat, I was bluntly told that I was no longer on his list it had been over a year, wished it did just take that but sadley is dosnt, does it......

got no idea if this is the sort of thing or not just spang to mind when I was reading Scott's and the others and things sprining in my mind are few and far between.....

[Tina]

Hi Scott...yes count me in as well....what ever i can do to help...i came out of hospital with nothing...knowing nothing! I was just so lucky to come across this web site !

The after care is next to nothing!

I agree start with GP'S

Love Tina xx

[Janet]

Hi Scott

You can definitely count me in as well like a fair few of the others I also was discharged with no information whatsoever. So would really love to help in anyway that I can.

BTW seen one of the Neuro-Registrars who was present during my surgery and was telling him about this site and what a lifesafer it has been to me in my recovery. He took the web address and promised to visit the site seemed very interested in it so hopefully it may be passed onto to other survivors.

Janet x

[tennissmithy]

Hi Scott,

You can definitely count me in My aftercare was shocking, sent out with a page leaflet on making sure I took my tablets correctly, nothing else. It has took me nearly 2 years to find a GP at my surgery with a neurological background who seems to have a small idea. He was more involced in motorbike accidents etc but he at least he understands the brain stuctures etc.

Lets start bouncing ideas around and go from there. Now is the right time to do it if the DOH are going to start an advertising campaign as well. Don't you think?

Love and hugs

Laura

[rince]

Hi all,

Thank you all for your replies, they've blown me away and I believe most of us have a story that makes it even more clear that we need to do something about the health professionals approach to us post SAH.

Cheers

Scott

[paul99]

scott

if i can be of any help please let me know i do know all the signs of sah issued by nhs ambulance service and the treatment pre hospital and im still going through it abit as lins partner and i would like to help if i can because there are massive issues i regard to after care and the way nurseing and drs view the care of patients and carers good luck

[Nurianna]

I definetely believe a universal post-SAH sort of protocol should be created.

Now I need to find out exactly what type of clip I have inserted in my brain. It´s the kind of question I would have never thought of asking on discharge (nor was in condition of thinking at that level) and neither my family did. We were all still in shock. 7 months down the path of recovery, today, I would leave the hospital with a real thick file of answered questions but back then....

I will be very happy to contribute to any questionnaire or information you require.

Thanks for being such a pioneering bunch,

Lots of love,

Nurianna

[Guest Shiree]

I too will help in anyway that I can

It was the same for me here in New Zealand, I had no idea what to expect. And to be blunt it was terrifying.....

An universal protocol would be a great thing indeed!

hugs

shiree

[rince]

What I'll do is draw up some sort of small scale document that runs through the basics. Want I think I want to happen is for everyone to comment, change and update what I've put. But keep in mind this has to be accessible and not go on for page after page in order for it to have the maximum impact.

Can people suggest headings for topics? I can think of things that are personal to everyone like "What I have" where you ask your Neurologist to say what sort of SAH you have and where, along with the treatment and what has been left in your body (coils, clips and what type etc) . Next would be what treatments can I safely have? This for the basic scans MRI etc and whether or not you are able to have them.

Then we would move on to the more general aspects of SAH, things like the flu jab and the DVLA stuff. As well as anything else that you all think is relevant.

Cheers

Scott

[Leo]

I think this is a fantastic idea but could I suggest we start with information for the ambulance service before moving onto GP's? That is because, like my own experience, it seems that it is almost commonplace for SAH to be misdiagnosed as a migraine by paramedics and then triage nurses. I have no idea how we would go about contacting them other than through the ambulance complaints service but they may know who we could contact?

The is a huge undertaking but very worthwhile as I was discharged with no information. The only printed info availbale on the ward was for stroke survivors evenn though I was treated in a major neurological centre. The booklets friends eventually sourced for me from the Brain & Spine Foundation were helpful but very vague and cautious. Until I hit upon this website I had no idea that the pain and emotions I am still feeling are within the bounds of normal as the booklets are very conservative - possibly not to scare people but I ended up feeling lost.

I am really pleased that we are discussing this

Leo

[Anne Fleming]

Hi Scott

Yes I'm shocked too by the differences in aftercare. I think I was generally very lucky with my treatment. Two of the things I found most helpful were the Nurse Specialist in Neurology at the Western General (Edinburgh) where I was coiled. I was told when I left hospital that I could phone or email her at any time with worries and I feel I could still do so 13 months on. The Chest, Heart and Stroke Association also get involved with patient care in Edinburgh after someone comes home and offer up to 6 home visits in the year following SAH. I'm not sure if it's the same in other areas.

Best

Anne

[Louise]

I too was at the Western General Edinburgh BUT never got offered any of that.

Although maybe because I went into Astley Rehab hospital, but then again I went back into the Western with viral meningitis and wasnt offered anything again....

I did have a couple of home visits from the nurse at the rehab tho only a few could have done with more and as I said a few years down the line I contacted them and I was no longer on their books.

L.x

[Anne Fleming]

Hi Louise

I think the nurse specialist post is new in hospitals and the Chest, Heart, Stroke nurse making home visits quite new too. I also went to Astley Ainslie for 6 months as day patient.

Best

Anne