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Hiya,

I've finally gotten round to thinking I might like to meet people who have experienced brain injury and have read on here that Headway would be a good place to start. I've looked at the website and can't find any mention of referrals but a friend told me that she was under the impression I would need a GP referral. Does anyone know if this is the case? I would phone them but my local group doesn't run at the weekend.

Dawn x

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Hi Dawn I go to Headway & I'm sure I didn't get a gp referral (I think diffrent strokes do ask for one tho). I did have to fill in a form including my GP#s details & info as to what injury I had. They do ask what kind of help you need & I think I put I felt isolated, less confident & needed to talk to people in the same situation as me on mine. It took a few weeks from sending tha back to them contacting me so perhaps they do contact your GP to verify your condition.

I have done several course with them & some social events, the most useful one was Introduction to Brain injury which explained why I felt like I did

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Thanks so much for the replies, I'll contact Headway through the week and see what they say. I wanted to see what you all thought first as since the sah, I seem less inclined to just jump in without knowing what's likely to happen first!

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You do have to be ready to accept help with Headway,I certainly wasn't initially & put off my assessment about 3 times thinking I was doing fine on my own. It took me a long while to see that I wasn't actually fine & although I was physically recovering mentally I was really a mess! Having done the initial course they told me I was early on in my recovery & that they normally take people from year onwards but my need for them was clear & it has made a huge difference to my life.

Good luck Dawn x

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  • 3 weeks later...

Just a little update...

Headway came to my flat today for an assessment. They tell me that they can offer me some support, but then said that I would need to be funded. They are getting me a Social Worker, who will refer me officially and this should kick-start the funding issue. I was under the impression that Headway were a charity. Is this not the case? The website says they are a registered charity...I'm confused!

Dawn x

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Dawn yes headway are a charity but they did receive a charity grant from the government. that money is no longer available as they are making direct payments to individuals who can then choose how to spend it for their own care. The problem with that is that most social workers won't get involved unless you are not capable of looking after yourself (feeding. toileting & dressing) & so there is no funding for people like me who physically are pretty able. I rang social services about direct funing & they weren't interested in me at all.

So although in principle direct funding sounds like a great idea, you can choose who cares for you & when, in reality it has meant Headways funds being considerably reduced. My Headway is still funding the majority of their services but the basic charge for tea/coffee/contribution to running costs has gone up. Its still minimal but compared to the £40-£50 an hour per course attended its a drop in the ocean!!

Being reliant on donations means that some people will have to pay towards the cost but wherever possible they do try to keep that as low as possible.

I hope you get some assistance from your social worker & you willl be able to attend Headway as they are a valuable support service, just a shame the Government doesn't see it that way?

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  • 1 month later...

I've had no luck with Headway as yet because I am still waiting to get a social worker and when I get one I'll have to wait to see if they can allocate funding. One of the social work students at Headway has asked the North Younger Adult team for their complaints procedure. This arrived yesterday, as she asked them to send me a copy too. It's been 2 months since a social worker was requested and while I think this is a bit slow, I'm not sure that I want to make a complaint. The student who requested the complaints information has now moved onto another placement (she left on Friday). To be honest, it's all taken so long I am no longer sure I need Headway anymore as I have now gotten so used to getting on with things myself, but I feel like I ought to because of how much effort has been put into it by other people. I'd love to hear any opinions on this one if you wouldn't mind?

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Dawn I found Headway really useful & initially I didn't see what they could offer me. I found that the general stuff about head injury applies to all of us no matter how we became injured (mine is purely from the surgery & vasospasms).

I think it would be useful to go & see what they can do for you & then decide if its for you or not.

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Thanks for the replies all, I see I still have problems in getting accross what i actually mean to say...what I'm not sure about is making a complaint against social services. I mean, it would have been nice if they had shifted themselves a bit quicker, but they only get their funding from the govt. It's not like they have singled me out to not get a social worker yet...I imagine they have very limited resources and staff and I'm not sure that a complaint is the way forward. That said, a friend of mine told me that a complaint isn't about you, it's about the people who come after you to ensure they are treated better. That makes it sound a whole lot different to me but I am still undecided. The first question on the form is 'have you raised your complaint with a member of staff and if so, who was it?' Well, the answer to that is no because it was the student at headway who made all the phone calls, so if I haven't raised the issue directly, how can I make a complaint?

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  • 5 weeks later...

I have a social worker at last! He came to visit me last week regarding attending Headway. He seems like a very nice, slightly nervous chap. I have now had to fill in a form to see if I have to pay a contribution towards attending Headway. i am sure that this is standard fare these days, but i had no idea that joining a support group would be so much hard work. Did anyone else go through all this to get to Headway?

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Glad to hear that you have a Social Worker at last.

My joining of Headway was very different to your experience.

I emailed them and a representative telephoned me a few days later. It was Christmas time and I was invited to their Christmas Party for a cup of tea and a mince pie! From then, I attended the sessions regularly and so far, have not paid a penny for the service.

It's very surprising to learn of the vast differences in our experiences of Headway.

Hope you are as well as can be today.

L xx

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Mine was similar to Lynnes, I rang them & they sent me a referral form which I filled in. They rang & we attended an assessment session before Xmas & then I didn't hear from them until Jan when they offered me courses that they felt woulf be of benefit to me.

However we were told that the direct funding they got from the Government was stopping & that personal funding would take its place. I ran social services but as I could wash & dress myself etc they didn't want to know, in fact they didn't have a clue how to assess someone with a brain injury or know what problems we experience. So I never got personal funding so I couldn't pass it on to Headway, we always paid a nominal sum for tea & coffee but recently because of the lack of funding each session will have a fee of £3. I don't think that goes anywhere near funding the service but it does help. I hate to think how I would have been without Headways help, hence today I am going to make cards for them to sell to raise much needed pennies

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I've been told by several different people that attending Headway costs £55 per person per day. So I guess it's not so surprising that they need me to be funded or that the government would expect me to pay a contribution. I wonder how far they think their ESA pay out actually goes. As usual with the assessment form, the only things counted are rent or mortgage and council tax. Presumeably the people who make up the rulings have never had to pay water rates, electricity, phone, t.v licence or buy food and petrol :roll:

But if like you say Gill, the sessions are to be about £3 then that's perfectly acceptable, but £15-£20 per session was mentioned to me. When you factor in petrol on top, plus poor Andy having to take holiday from work if I'm not back driving by then....it doesn't quite seem quite worth it somehow. Sorry if i seem like a whinge-bag! :oops:

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I think the idea of self funding in principle is good but in practice people like us lose out. The idea is that social services assess your needs & then make a payment to you to cover that, its then up to you how you spend it ie home carer, taxis, support groups like headway if that is what you need. It means you can choose a carer rather than have one allocated to you.The payments are over & above ESA

In principle social service have neither the time or the skill to assess the needs of people like us, its the same old thing 'you look fine so you must be fine'!! I couldn't even get social services to come out & assess me, that was done on the phone by asking if I could wash & dress on my own & feed myself!! job done!!

This means that Headway are losing out both ways, in direct support from the government & from the point of view of personal funding. If we had to pay the full price for a session I really feel headway would have to close , I was told £40-£60 a session so a contribution of £3 is nominal but when my ESA stops (today) I wouldn't have even £3 to give them!!!

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Your not a winge Dawn, OMG! £55 pppd thats terrible, when I went to berevement councelling I just made a donation which I found farer...

isnt it funny how it seems so different across the board...Yes Gill one reason I dont get anything other than Incopacity is I can see to myself eg: wash/dress ect No they dont have a scooby do they!!!!

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Isn't it a shame that the things we all see as huge achievements such as dressing, walking etc are seen as 'proof' that we are all 'fine'? Thank goodness we can come to BTG to share our achievements and still have them recognised as such!

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The payments are over & above ESA

If my assessment shows that Andy earns enough for me to pay a contribution, this has to be paid directly by me out of my ESA funds, or Andy's wages. If the assessment shows that between us our income is not sufficient, then they will fund me over and above the ESA.

I have no idea what I do so wrong when trying to use a quote! Sorry, as this now makes no sense!

Edited by Karen
Quote corrected
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Yes, it came as a bit of a nasty shock to me too! The thing is, when I first started this process, I was feeling quite low and very lonely. I have now become used to occupying my own time and am not in need in quite the same way. Of course if the funding appears, I will attend!

Karen, thanks very much for fixing the quote!

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  • 2 weeks later...

I have some goods news!!! I received a letter at the weekend regarding my payments towards Headway. Although I have declared Andy's wages, Social Services have only taken my own income into account. My own income is ESA only and so I am not expected to contribute towards attending Headway. The letter also states that my services cost £101 per week, I attend Headway for 2 days, so it's little wonder a contribution is an option to be assessed for all.

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