Aftercare

[Sasbo]

Hi All

It's 7 months since I had my SAH and was discharged with no aftercare arrangements, contact numbers or anything. I'm sure that's true of a lot of us.

My GP has been absolutely brilliant but is, naturally, limited in what he can do. However, now I'm getting used to the physical drawbacks and they're improving (slowly), the emotional drawbacks are coming to the fore and are causing me problems so I saw a psychiatrist last night. Had to go privately and have had to fight various systems to get there but I'm desperately hoping it will be useful.

The last year or two has given me more than my share of trauma/upset - my children and I were caught up in the london bombings, with Tom (my son) missing for 4 hours, my mother died very suddenly last June, spent the whole summer travelling up north each weekend to be with my dad, moved in with my dad in September, started renovating a barn and had a SAH, again all in September so Dr Findlay (yes really!) had a field day!! Anyway I think it's going to be helpful as he is also going to refer me (NHS referral I think) to an OT/Physio lady as he thinks this too will be beneficial so there's beginning to be a bit more light at the end of this very long tunnel.

Both the GP and the psychiatrist have been appalled/upset/embarassed about the lack of care for people 'ejected' from hospital after such serious illnesses but there's nothing they can do except keep banging away.

Has anyone else had psychy/OT/physio and does it all help?

Sarah

[Karen]

Hi Sarah,

Yours is a common tale, I'm afraid .... left wandering until you get to desparation point and then finally, somebody starts to do something. Just another one of the reasons why I set this site up. Everybody after a SAH deserves so much better than this. Think that everyone of us should have had some some sort of counselling put ino place at about the 3 month recovery stage.

I eventually got some physio, but it was really just for my eye. Did I find it helpful? not for me personally, but at least I thought that somebody was trying to help me with one of my main problems. However, the Physio was a really helpful girl and she got me a place at the local gym with a 1 - 1 trainer to improve my core strength......I wasn't considered bad enough for the hospital to carry it out. I've never been offered counselling. I'm still waiting to hear if I'm going to get some O/T.....apparently, the waiting list down here is appalling....I've sort of given up, as I think that it's something, once again, that I should have had in my first year and you just struggle on with things.

My advice to anyone reading this, is don't hold back from asking for help and seek it as soon as you think you need it, as there's such a waiting list and it can take months and months to see somebody, after the GP has initially referred you.....also, get the help within the first year post SAH.

I'm still waiting for my scan results and I've heard nothing back from the support nurse ..... it's just ALL so ****** frustrating .... and if you keep on at them, then it makes you feel bad for creating such a fuss etc. Just wish that they could walk a mile in all of our shoes and then just may be, things would change.

Anyway, my rant is now over ....

Good luck with it all Sarah.

[Skippy]

Hey sweetie

Gosh I didn't realise you'd had such a bad time of it - you always sound so upbeat and full of beans. Sending a big big hug.

I've been lucky enough not to need OT or Physio, but the emotional side three weeks after my SAH left half my family fearing I would do something drastic. My GP, in this instance, was fantastic and reffered me straight away to their in house counsellor. He himself was surprised to see em so soon after the SAH as apparently they say that the first three to six months are classed as PTSS (post traumtic stress syndrome) - however, like you I;d been discharged from hospital without any contact numbers, advice or knowledge of what to expect. My counsellor was fantastic and I think I only had to see him 3 or 4 times. It was just good getting it all out of my system to someone who was directly involved or a friend. I was able to voice all my concerns and worries without being judged or treated like I was made of glass. That, on top of this site, has helped me come to terms with what has happened and made me realise that unfortunately, it is 'just one of those things'.

I recommend talking to someone though - that definitely helped and you could voice all your pent up feeling about all that you've been through recently, not just your SAH.

But yeah, the emotional side for me was the hardest. I remember people saying to me after "How are you?" and I'd say "physically I'm fine, emotionally I'm screwed!" Now? I can't remember the last day I cried about it and the only thing that gets me down is the headaches and they haven't been too bad for the past couple of days.

I really hope you do get to see someone to talk to Sarah, it would do you the world of good and if the physio and OT help with the physical side then I would say that you are very very very near that light at the end of the tunnel. I'm popping in a 200watt bulb just to keep you going

Sami xxx

[Louise]

Hey there

Again I think because mines was so bad in a weird way I was lucky I got the physio to help with balance/walking co-ordination, speech thearapy, O/T, phycologist.

But when I got discharged I never had any contact info, the O/T got me the place at college called me the end of my thrid week there to see how I was finding it, & I have never spoken to her since.

I just had my visits to the consultant.

But yes I would totally agree dont hold back asking for help & if its offered take it even if you think you dont need it. Sarah go as long as you feel the need to even if you think your wasting the persons time if your not ready to stop dont.

I would say that its more when things settle down that I found the need again to see someone which I did but I only got 2 appointments because I'd already been in the system which I didnt think right.

Louise.x

[Karen]

Apart from the time I was in hospital after the SAH, I've never ever seen a Consultant ....

[andyp]

Hi Sarah-there are a few things i wanted o pick up on here..

Blimey you have had a rough time..not just one trauma but at least 3!

I said to my wife only a few weeks back(and i am 2 years on)-"you know I think what i have had is some sort of post-traumatic stress syndrome after this lot"..and Sami..you echoed those words..exactly.

It is probably something that many people who have a near deathexperience suffer..and it can be at any time after the event.

For me it was about ayear later when i found out how bad it actually had been from my consultant..yepit was nearly a year when i got aheck up and only by insisting..otherwisw there would have been nothing!

I paid to see a Counsellor so I could get back to work ASAP...bad move..don't go back too soon!

I saw a Counsellor again another year on but I think talking to others who experienced the same has been of more use for me.

i wouldn't stop anyone from Counselling or psycho etc because you need to find what is right for you!!!!

I think for me that the emotional side was the worst..i am still coping with it 2 years on ..all be it I am much better in that respect now.

All the best

Andy P

x

[Guest Cathy]

Hi,

I echo all what has been said the after care for me nil. If it wasn't for my family I think I would have gone mad. My doctor has been great in writting letters to my employer but I would say if you can stay at home until you really feel you can work then do so. I know sometimes it is not possible to do so. Coping with getting through the day is hard enough. Funny really because I have said to my family it is the near death experience which makes you realise how preciouse life is. Oh yes I can moan for England but when push comes to shove I know I have everything I need. I can't turn the clock back but I can go forward with what I have left. I think this site is really a blessing because you realise things which are happening to you both mentally and physically is part of it all, not you being lazy or stupid. So from new person thank you all.

Too tired now so I'm off to bed didn't realise the time

Molls

[Slim]

Yes I agree there is little After Care and even less understanding of what is happening.

I do go to see an OT and a Physio I remember when they offered me in hospital to refer me to Horizons the rehabilitation centre. They thought I wasn't really a candidate but would refer me if I wanted and I'm glad I grabbed at it.

like most of us I don't have any obvious physical symptoms and am def not an obvious candidate but it has help ease my isolation. My G.P is great though I see her every 2 months to renew my sick line and I feel she has maybe had some experience of people like us but she's very understanding and intuitive.

I saw my consultant at 3months waiting now for my follow up scan it has been 7months. I remember really liking my consultant in hospital but was very disappointed after my 3month appointment I feel they are fantastic with the emergency medicine but def not great with the after care. Although I now have my consultants email address, I emailed him for the first time the other day and he got back v quickly.

[Slim]

Hi Sarah,

Just re read your post. Rambled abit in my last one.

I find physio a fantastic help. On my first appointment I did wonder what on earth we would do as I have no real movement issues. I have slight loss of sensitivity on a couple of my fingers and balance issues when I'm tired. They have give me a couple of exercises that aren't too strenous and they just help to build up your core strength and will help with balance. This week I was learning a Tai Chi type move.

The OT, I have mixed feelings about my OT is a lovely girl but I don't think she really understands or has experience of whats happening with me. And I have left a few times quite upset. However when I first met her she got me to fill in a fatigue chart. It all sounds so simple now. But I made a diary and was able to get the fatigue/insomnia abit under control e.g by setting an alarm and only sleeping an hour in the afternoon. My grip is quite poor although always was and she gave me a sheet of rubber (can't remember name) to help open jars its great.

But basically I think any help is great and it gets me out of the house and I feel that they then haven't forgotten about me.

Good luck and let us know how you get on.

aine xox

[rince]

When I was kicked out of hospital my wife found it all a bit overwhelming (I can't remember what I thought). To be suddenly left on your own with someone who only a week earlier was unconcious and in need of 24hr professional care would effect anyone in that way. My home only has a toilet downstairs and I had to sleep downstairs for a week before I could start on the stairs to go to bed, even a simple thing like a pee bottle would of made my life so much easier. The complete lack of intial support probably came down to the fact that we didn't know what to ask for! No one told us what we would need given our circumstances, and if we asked it would of been provided! Much of the fault with my personal circumstances is that a SHO made the decsion to send me home (needed the bed space) whilst my Consultant and Specialist Nurse were on holiday, if they were there my discharge would of been handled very differently.

Post intial tho I had a very positive experience with all aspects of my aftercare being handled in a very professional manner. GP, OT, Neuro Physio, and other support agencies being there for me.

Scott