Headway
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Education health care plan after TBI

Hi all,

I would like to introduce myself to the forum.

My 15 year old daughter suffered a TBI July 2017. She was on a school trip in the states when her accident happened, we are from the UK. She fractured her hip, pelvis and base of skull. All her broken bones have healed fantastic and she is making a fantastic recovery. Back at school studying for her GCSE’s. She has dropped several focusing on the main subjects with a full time teaching assistant which I have to pay for until an EHCP is put in place. Which unfortunately I found out today she has been turned down for, reasoning lack of NHS support.

I understand the brain takes time to rewire and find new routes. The initial care and rehab care we had in the States was fantastic, they carried out all the necessary tests to aid her return to school with more than appropriate paperwork to support, unfortunately when we arrived back in the UK 9 weeks after her accident we really struggled to get in to see a consultant and rehab team. Her love for the theatre has really aided her recovery singing, learning her lines etc.., I feel I need support to point me in the right direction, I feel I’m trying to natigate a pathway with no understanding of what my daughter actually needs. Is there support out there to fill in the EHCP for children with brain injuries if I appeal.

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Definitely call Headway 0808 800 2244 right away. They should be able to assist you in finding the resources your daughter needs.

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Thank you.

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Hi Susan,

Unfortunately you have seen first hand the difference between paid for healthcare, via your insurance in the USA, and our NHS health care in this country.

The NHs is second to none in the world but is seriously short of money now because of mis- management along the way. This means that im afraid patience is needed while the help you require is put in place. This happens quicker while you can pay or are covered by insurance in the States but if you cant pay or dont have insurance it would not happen.

We cant compare our health service with theirs.

I do hope you you find access to help soon.

Take care

Janet x

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Hi Janet,

Thank you. I totally agree. I’ve never had to use the NHS before, I understand when you get in the system it is good. At the moment all my daughters therapies are private. I don’t know how long she will need them, but at some point I need to talk to someone who understands the process and where I can get help. It’s like walking in the dark... the amount of companies I’ve went through to find the right therapies has been so stressful.

The school insurance company wanted her airlifted back to UK immediately on a UCI flight, I had such a fight to get to keep her in the States. I’m so glad I did.

Susan xx

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I really hope she gets the help she needs keep fighting for her I had no one in my corner. Circumstances different but this country has neglected my health both physically and mentally, I’m only learning now the things that might’ve made a difference in my recovery.

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Thank you. I have come to the realization, I’m so naive. I thought as I paid my taxes, I had a right to healthcare for myself and children. But when I say it out loud, who ever told me that’s what I get in return for paying my taxes, .nobody did, I just assumed. Feeling very naive...

I will continue to fight her corner, she has made an unbelievable recovery and I admire her strength. I really just want the local authorities to meet half way and give her a chance. It’s not even results driven.

When your sitting week after week in a hospital waiting for a loved one to come out of a coma, you will take anything a blink of an eye, a squeeze of your hand, it is all tiny sets in the right direction. Xx

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It’s disgusting the way a developed country treats people in their hour of need. I really hope you get what you need I never have still fighting over ten years since mine

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I’m a teacher, although in primary and I’ve always thought an EHCP should be applied for by the SENCO in the school and it would be their job to get other services involved like occupational health and educational psychologists to observe her in school and submit reports which would go alongside the application...is there anyone in school you can talk to? Or else your gp may be able to help, or speak directly to the local council? X

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Hi lauren,

Thank you. Hope all good. I found yt videos of other TBI stories really comforting as I sat by my daughters bed. My husband unfortunately couldn’t watch them. They helped me to see and understand there is a process.

Yes, the school completed all the forms it was them who suggested she needed the EHCP. As the accident was in the states her educational psychologist report was also completed there, which you can’t carry out a new one until 6 months after. All medical reports are from States also, very detailed, may I add...

I’ve woke up this morning with the mindset, to appeal and get all tests done in UK.

She goes to an independent school, so SENCO not as strong, but it is there. The school offered her 5 hours help per week.

I decided it was not enough and asked if we could put a teaching assistant in place full time. Which is now in place, with me paying for it.

She can’t write at the moment due to shearing left hand side of brain so using a computer, struggling to remember information one day to the next, but getting better. Teaching assistant fantastic, not spoon feeding but supporting her in all lessons. Homework plans, revision plans etc.

As damage to the frontal lobe, she has no filter... being a 15 year old girl that is hard, she just says exactly what she is thinking.

Thinking of where she was and how far she has come it is amazing really... the surgeon sat my husband done and said she may not make it through the night..

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Considering all that shes been through she’s doing amazingly well! I’m sure it’s still so hard though.

Certainly appeal the decision, it’s madness but sadly the state of our education system right now! I really hope you get some answers. Keep on at the school for support as they should be the ones with the knowledge on how to get things going faster xx

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yes headway headway headway! Great charity support grain most major city’s x

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Thank you.

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My eldest granddaughter has Coffin Lowry syndrome, a genetic disorder that means, although she is now approaching 21, she has a mental age of around 12, so i understand the telling it how it is, but she is learning. She has also physical disabilities to contend with.

My point is her parents have had to fight sll her life to get her what she has needed. To the point that my daughter in law trained as a SENCO teacher, and is now assistant head at a special needs school, she is still horrified by what she sees families put through but helps where she can now.

I am sure Headway can help point you in the right direction and you must fight for her, she cant do it herself and my thoughts and support go with you.

Janet xx

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Hi,

So sorry not to be able to offer advice, but the question which springs to mind is: Why is the travel insurance (which presumably was in place for her trip) not paying for her continuing recovery treatments? She may have been brought home, but eveudehty is far from recovered.....the support she needs to recover should surely be paid for by the insurance company? I'm sure you've checked the detail of the policy, but in case you haven't, maybe you should have a check? It's seems that they have helped while your daughter was immediately post accident in the states, and even offered repatriation via private medic evac, so I wonder if they should Bec funding her continued care to bridge the gap until the NHS puts appropriate treatment in place? I expect you've already looked into this but thought I'd mention it just in case. Good luck with your pursuit of support x

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Thank you. I’m not sure if the insurance company can help, I’ll need to check that out. They covered the medical bill, but where very pushy on getting her back to UK... but didn’t cover flights, hotels, car journeys to and from hospital, we had to pay that. I stayed in the hospital the whole time, but my husband and son stayed in hotel nearby.

Unfortunately we don’t have the rehab setup in this country in comparison to the States. I didn’t have to worry about anything.

They were so professional and everyone worked as a team. Xx

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