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Frustration!!

So I think my BI was about 10/11 years ago. Since then I’ve been struggling to have any help/treatment/rehabilitation/etc.. My accident was in Peru and it was a week or so before I was allowed to fly home. I think because it didn’t happen here people just saw the state of my face and didn’t think about my head, despite me pushing for it.

Baby 3 has just turned 1 and I’m trying again to get CBT therapy. It seems like my borough only deal with mental health as in depression. Does mental health also cover BI? I don’t understand anymore and feel so defeated by it all. It looks like the latest referral I’ve had doesn’t even have CBT as an option so again I’m in the wrong place and again I’ll be discharged and again I’ll have to start from the beginning.

My mum said she would be able to pay for me to have private CBT which would be amazing but I can’t even find anyone. I’ve looked at official registers and things and I just still can’t find anyone. With 3 children and no help, I’m massively limited on time. My husband is under a lot of pressure at work and can’t miss hige chunks of his days for me to go somewhere. But I’m tired and I’m really struggling to be a good person at the moment and I really need help and I keep asking but I just don’t seem to be able to get any?!

What do I do!!!

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have you spoken to your gp?

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Yep, loads. Keep getting referred to mental health.

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Daisy,in my area the same-seems cos MH is only thing left in NHS,is all i get.

But CBT should be fairly easy to access in most areas tho,i have near me privately(£40 a week,hour,tho she won't accept i have PCS at all!).

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Forgive me but I don't understand why you can't find someone who does CBT as they are everywhere unless you live in some remote location somewhere? You shouldn't even have to pay for it as most authorities provide about 10 sessions for free. Now I couldn't answer (before I looked) whether brain injury comes under mental health but I have just done a two second search on google and come up with the following factsheet link headway.org.uk/media/4051/m...

I am on this forum because someone I know has a brain injury not me myself and I know very little about it, but what I am saying is the information is out there; I hope this link helps and sorry if I come across a bit harsh but I'm not understanding why you can't get the information or help as it is there for your seeing. Surely if you have a condition then you research it??? Maybe with young ones you've literally got no time, so hopefully my searching for you has speeded things up for you.

You may need a different referral other than mental health . If you are not happy with your GP and they are not helping then change. Also consider joining a Headway group if you are anywhere near one. Does this help?

Gemma x

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The only CBT offered in my borough is for mental health and not for brain injury. It’s not the GPs fault. There are no local CBT therapists, only councillors who use CBT as part of their treatments and not specialists in it. I’ve looked on registers. Going further out for CBT won’t work for me because I have nobody to leave my kids with.

You do come across as harsh. I’m finding this situation really distressing. I don’t think being harsh is very kind!

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Sorry, I did apologise if I sounded harsh. I didn't mean it. I know it can all be very confusing. CBT is not a very specialised subject. Most people who use it will be counsellors who have trained in it; it amounts to the same thing. The training isn't long as it is quite a simple therapy to train in and administer. That is why the NHS like it so much and why it is often used as therapy on the NHS because it is cheap to administer ( they usually only suggest about 10 to 12 weeks) and it is so called "results orientated" (They claim to be able to "measure" the results and the NHS is all about that nowadays.)

( I can see where you are coming from though that you need the CBT to be focussed towards head injury more than mental health.)

You will see I am not a big fan of CBT but I am coming at it from a different angle from you. I am someone who has had a traumatic and abusive childhood and has basically been in therapy for mental health ( not brain injury related) for most of my adult life ( over 40 years) I am now 60 and finally emerging from the terror of my childhood. I normally write on the mental health pages and maybe I should stick to that; but i mean you no harm. CBT does not work for people like me as it just "scratches at the surface" when people have come from abusive backgrounds.

However in your situation, you may indeed find that CBT will benefit you. There is much CBT to be found online and free as well. It is basically about changing your thought patterns and if you are not able to access it locally could online be another option for you?

Once again apologies for how I come across. I could never have even started to raise a child such is the depth of my trauma. My admiration goes out to you and wishing you all success.

Gemmalouise x

PS This bit of the information sheet may be relevant so I have copied it from the information sheet I posted the link to.

"An appropriate professional, such as a clinical psychologist, neuropsychologist or

neuropsychiatrist will be able to decide whether or not the behaviour that you display can

be understood as being a direct consequence of the brain injury, or in fact warrants a

diagnosis of a mental health condition. "

Maybe ask for referral to one of these specialists first? And maybe they could direct you or Headway could direct?

Gemma

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Thank you for explaining. I spend a lot of time feeling judged and criticised and am quite defensive. Partly because I don’t parent the way my in laws did/do but mainly because of the way I respond and react and the lack of control I have over myself.

The counsellor I saw said that I needed someone who practices only CBT and she couldn’t help because she’s only done a short amount of studying and doesn’t use it as her main ‘tool’ but alongside other therapies. I can’t do something on line because I don’t really understand websites very well and information presented that way.

I’ve seen a neuropsychologist and she said I need CBT, today the advice I had was to try and get back in touch with her to see if she can refer me directly rather than it going through the borough and getting back into the wrong thing.

The way it’s been sold to me is that the damage to my head meant that part of the brain is now protected and by passed and the wrong department is taking care of things it doesn’t understand and I need to be given the tools to enable myself to understand how to behave/react how I used to. More or less.

Your situation sounds awful and I’m so sorry you had a traumatic childhood. Children should be cherished.

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Thanks for that and I wish you good luck with your referral back to the neuropsychologist and hope she can put you in touch with the appropriate help. Sometimes we can just feel like we are going round and round on a wheel when it comes to getting correct medical advice and help, I know :)

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Thanks very much. I hope you fully emerge from the terror and I hope you have already or do find peace. Nobody should need to use words like that to describe their childhood. My stupid head doesn’t even compare.

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I have had the DBT thing from a free neuropsychologist,but there is no way i wanna pay for overpriced things should be done on NHS. Unfortunately NHS are dumbing down BI to MH alot-all about cost over lives.

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Sounds like u being bounced back & forth in NHS,sometimes this happens. Is such a shame,especially when u sound like u are good with ur kids. Is wrong of NHS.

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Gemma,u sound like u should be posting on here to me. We all have a job explaining ourselves,we all have probs understanding all the time. U come from a similar background to my partner,but you're where she is in 10 or so yrs time. Think ur right about CBT-i had a bit before,is too basic. Having same now via a counsellor,but she won't accept BI at all. But things from childhood she is fairly accurate

Everything is private only in my area,never referrals. Think cos i not high risk enough is why in my case. Is a bloody lottery tho!

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Hi Daisy, this is a hard enough time without a tbi. I had my tbi 30 years ago and I have tried many things over the years. I found that after doing a course in Mindfulness I had the space to step back and not feel so overwhelmed by all the things I needed to do. You need to look after you before you can look after anyone else.

Maybe you need to invest in paying a babysitter so you can keep yourself able to take care of everyone else.

A support group would also be helpful, where you can talk to people who have been through something similar and have learned ways to cope with young family, fatigue, stress etc

It took me years but eventually now I am part of a brain injury group and a mindfulness group. I used to feel guilty about paying a childminder so I could go for mindfulness and support but I know if I hadn't I would have ended up in a worse place which would not have helped my husband or children.

I hope you find what you need x

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Thank you for the suggestion, sounds like a worthwhile idea!

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hi daisy, ive just looked it up and while you do need to be referred by your gp, you can go private.

the course usually lasts for between 5 and 20 sessions, if went private the cost would be 40 to £100 per session.

steve x

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Sadly not that simple and where I am it’s upwards of £100 per session and nobody in my local area. Even my doctor can’t find anyone.

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ok you say youve seen a neuro psychologist and she said you need cbt, a letter to that effect would have been sent to your gp, so if he or she is in any doubt about the service you need they can contact your neuro pyschologist.

steve x

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That all happened a year and a half ago and so far I’m on third or 4th gp referral. All CBT here goes through mental health and they keep wanting to treat me for depression which I don’t have. So then they keep discharging me. I’m waiting to hear back from the latest referral as to whether or not they now realise that they can give me 1-1 CBT despite the fact I’m not depressed. I’ve lost hope on it really.

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Think in my area is a skype one called IAPT i think-syretches out of area,not sure if in London. But i think u said u couldn't do Skype-i understand that,even GP's doing appts on phone bugs me!

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Hi daisy,

I'm sorry to hear you having a bad time, my gp has referee me to a non NHS free therapy service called oasis talk, maybe you could look into it as that's how I got my CBT a d mindfulness meditation and they always follow though and if one course doesn't work they will suggest others and wont forget about you and if one worked but you see feel low they will again provide alternatives ones or some of the therapist run they own classes away from oasis talk so its definitely worth checking out:

oasis-talk.org

Or if its not in your area as it only looks like south west, they have a section of self help guides you can use

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That organisation looks fantastic and it looks like they offer free 6 weeks counselling sessions via Skype and for that one it only says you need to be over 18 and a UK resident; it doesn't stress that you have to reside in that area so it may be worth while the poster trying this one.

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ive just looked it up and cbt is a talking therapy used for depression and anxiety plus other mental health issues.

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