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Guest stever

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Once again,thanks to you all for your responses,they really are uplifting and reassuring.

I dont know how far this will go,but it might be helpfull for others in the future.

The story is as follows:-Tina was transfered to our local General hospital late saturday (7/02/09).When visiting on sunday,I was told by the staff that a consultant would be round monday to arrange a recovery package for her.

At mondays visit,I was told that the consultant had been and a package had been put in place,but nothing was likely to happen until wednesday at the earliest (everything takes time).

At tuesdays visit I asked what the lastest state of play was, and was told that they were preparing her for home.I questioned this as no-one had seen her for any kind of assessment,and,that I thought I was unprepared to be able to look after her properly at home.The staff said "why what do you want" I said that I had been on the internet and on BTG site,and felt that at least a visit from an Occupation Theropist would be good. The staff said they would arrange this. I said,but why should I have to find out about these things,and then have to ask for any kind of service.This question went unanswered.


(for your information) Tinas current status is that she has no physical problems (luckily),but like many has short term memory loss and bouts of extreme confusion.

Tina works for Social Services,so,not knowing what to do,I thought lets use what avenues I have,and see if I can find a way of pulling some strings to ensure Tina gets the best of everything available,and is entitled to,to assist her best recovery now and later.

I rang her employers and asked if they could point me in the right direction,using any contacts they have who could help.

The first contact was Headway,and they have been extremely helpfull,and I am due to meet them soon to discuss what they are able to do.

More interestingly,I was given the name and number of the top serious brain injury administrator for our region(who is based at our local general hospital).I rang this person,not expecting to get a reply,however,this person rang me back within a few hours.

I explained the whole story (as above) to this person,who firstly was shocked that nothing had been done.This person said:-

"do not accept any discharge until a full and satifactory care package has been put in place, this should cover,a social worker,occupational theropist,an intermediate care plan to cover minimum 6 weeks, an assessment to possibly refer to Neuro rehab,and that a whole home care package is arranged and put in place"

This person also said that if I was unhappy with either the speed,or details of the package,to ring this person when I was at the hospital,and this person would come and meet me and the neccessery people concerned to sort this out.

The hospital,on wednesday,had contacted the discharge department,and in liason with myself,would be putting together a total package.

I will keep you informed as this progresses,but it would seem a lot of people may be missing out on assistance that they should be receiving.

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Hi Steve,

Well that's good news ..... the Headway organisation seem to be v.helpful from what I've heard on BTG..... just a shame that people have to go to them in the first place!

I never saw an O/T in hospital or before my discharge ..... I left hospital in a wheelchair, as I had double vision, couldn't walk further than a couple of yards and had severe balance problems. I think that most of us here, have kind of been left in limbo land and felt abandoned on discharge and just advised to see our GP ..... I think that I was at the 18 month stage, when I was offered O/T and that was with a waiting list of about 6 months..... When I finally got the appointment, I decided that it was too late to bother with it and a total waste of time. It was the same with physio too.

Yes, Steve, I think that a lot of people are missing out on the assistance that they need and deserve ...... but, if you haven't got the info, then how do you know? Most of us strive to be as independent as possible after a SAH, but it seems that you have to get to desparation point, before you can get access to the right people and get the help needed......

Anyway, I could go on and on ..... :)

Hope that things work out....

Love K x

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you have bought up my very point,no one should have to go looking for support,all info should be redely available and everyone should get the full care and support they need and deserve.

looks like ive started banging my drum!!!!!


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Hi Steve,

Well, in practice we don't get the help and support that we need and that's why unfortunately, website's such as BTG were set up and still exist .... I've been banging the drum for a long time, but can't see any changes and I read the same story and problems, over and over again.... it's frustrating, but at least the mutual support here, can help in a small way.

Good luck,

Love K x

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Guest ElaineW

Hi Steve . My mum had Intermediate Care who I have to say were absolutely fantastic, nothing was too much trouble and they came in as often or as less as you wished. She even had a follow up call after 3 months to check if mum deeded any assistance again. They also organise physios, can take bloods, BP and arrange any home aids e.g. bath rails, stools, etc. There help was endless. I only came across your postings today or I could have helped you sooner with this query.The hospital will not let Tina leave until this is all in place and if is anything to go by my mum, there was someone at her house within the hour after she was discharged. I hope all the plans work out well.


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