Post brain injury support

[TBI2015]

Hey our local headway group is working on creating a better aftercare support system in our area ....just wanting ideas what would of helped for you post injury whether you are a sufferer or a relative

All suggestions welcome

[StrawberryCream]

Is this a small service e.g. a support group with limited financial resources or a bigger funded Headway rehab service?

[TBI2015 in reply to StrawberryCream]

Yes small for now access to some funding

[Stardrop]

Friendship both for carers and clients extending into meeting for coffee , so you have a new net work to replace those friends who bailed. A who to go to for help for things. My stroke club do a plastic wallet with details of the wheelchair taxi firm, the local home delivery meals people - they deliver to the door your choice. All sorts of information in a file so you can find it easily and don't throw it out.

[razyheath43]

the hub meetings are good.However sometimes you just want someone on the end of the phone

[TBI2015 in reply to razyheath43]

There is the headway helpline or do you mean something more local?

[razyheath43 in reply to TBI2015]

Oh yes sorry,i can phone our Headway lady locally.

[Hidden]

I have only visited my local Headway to make an appointment but the people seemed warm, friendly and understanding (unlike the general public!) I have an appointment there next week so will mention more about what I like. So far it's been acceptance, understanding and a cup of tea

[steve55]

amyc87 were a monthly group meet down on the south coast, but we usually have a coffee evening halfway though the month, have a laugh, moan about the group leader, discuss what subjects wed like have a talk and maybe activities and outings.

hope that helps

[Hidden]

I was admitted via A and E after having a 40 minute seizure. Found large brain tumour. I was in for five days and released with no information. Then listed for pre op at which no info. Then 9 hr op and ten days in hospital. Discharged very quickly one day with no information. So at what stage should a brain tumour sufferer receive info of which I had none despite meeting probably thirty staff. I suppose they all resume someone is doing it. When I wanted to ask an important question I phoned my consultants secretary who put me in touch with a neuro nurse who was very surprised I'd been through the whole thing with not a booklet a phone no or an avenue.

[TBI2015 in reply to Hidden]

Terrible, the lack of communication is a common factor I feel - and unless you go looking they just assume your okay - what would help you post injury?

[Hidden in reply to TBI2015]

Leaflets on the type of tumour, what to expect. Info on who to contact for questions, concerns and help available for all the side effects of the surgery and medications.

[TBI2015]

So sorry to hear that - can you give me some ideas what Types of support would help her and yourself post discharge 🙂

[Broken-head-girl]

Leaflets about headway and the support groups would be good for gps, hospitals and neurologists to hand out as it was only by a chance google of concussion that I can across this site I've never been told about it by the health professionals. Xxx

[TBI2015 in reply to Broken-head-girl]

Yes I to only found head way through my own research - do you think volunteers on the wards would help too?

[TBI2015]

Sorry your having such a terrible time. I'm just trying to get some ideas what our headway volunteers could help with.