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Headway
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Occupational Therapy

Hi

My husband had now be n home from Neuro rehab unit for a month and we haven’t seen anyone from occupational health. I feel like I have no support and don’t know what to do. My husband has a hypoxic brain injury and is doing really well but where is the support to help me to support him.

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Hi Bellabear12,

my husband has been home for 3 weeks and has a Hypoxic brain injury. The rehab unit where my husband was has a community occ upational thearpy team. They made his appointment before he was discharged. Maybe ring the rehab unit and ask where they are.

How is your husband and how are you?

Things are going well so far for us.

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Hi thanks for your response was just concerned that I hadn’t seen anyone yet. He is doing well thanks has started to read but really struggling with writing and a bit forgetful. How are you are your husband des he have the same issues or can he read and write yet

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Hi yes my husband can read and write. His memory and cognitive skills aren't great. Also he gets very tired and needs lots of rest. Our stories sound very similar. We have been out for dinner tonight and it went really well, nobody would know there was anything wrong with him. Keep intouch it's good to talk to someone in a similar situation.

Take care x

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Bella, so good to hear your man has made promising headway. Further progress will likely be a lengthy business as there's so much more to take in after brain injury. With distractions everywhere, events which are everyday routines for most people will be overwhelming at times for a struggling brain.

You're over the worst but the repetition and reinforcement of re-learning so much will be at times frustrating, especially with your husband's inevitable fatigue and desire to switch off every so often.

As Unionmill suggests, do contact the unit and ask for some reassurance regarding therapy. And make time for your own respite occasionally !

Best wishes, Cat x

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This time last year my son had tbi and was in Neuro rehab 4 weeks. Once discharged he was supposed to have been contacted by community outreach occ health. We were informed could be 6-8 weeks. It never happened. Luckily we sought advice from a solicitor as he was passenger in a car crash. They got him a private occ health rep.

Keep at them. Doncaster was a poor service. Ask neirobtehab for advice on timescales for the services.

Good luck. Wish you a speedy recovery

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Keep phoning them and get your gp to do the same. I think my sister rang the neuro rehab team every other day to get them to come out to see me.

Good luck!

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Thanks everyone for your advice will keep at them

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As everyone has said chase them up so they are aware further help is needed. Most rehab services are woefully underfunded and struggle to offer the service you might reasonably expect, so they will prioritise who they see and therefore you may be on a long waiting list.

If they've got the resources some units do try to offer support and understanding a TBI for carers. Personally I wouldn't count on you receiving support due to the above. Headway groups are the main provider to carers. You should check if there's a local group in your area, failing that Headway's advice line and in particular HATS nurse:

headway.org.uk/supporting-y...

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Hiya. My first BI was in 1985. The operation lasted 11 hours and all in all the stay in hospital was just over 11 weeks. My second BI was a subdural haemorrhage in 2013. No operation and discharged after 12 days. My third one was sometime last year after a series of passing out and only discovered after an MRI scan. I've been epileptic since the first BI and in all these years I've had no type of therapy except the odd check up with the doctor. To make things more difficult along comes AF ànd angina. Stents and ablation procedures, but still no actual therapy, just a bit of mushroom treatment. Kept in the dark and Fed on muck. So maybe it's the way it's done. Beneficial or no. etc. I hope things work out for you and your partner. Good luck. Dave x

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I would hope such horror stories are less frequent, I had a brain hemorrhage in 2002 and 2004 but didn't see a Neuropsychologist until 2006, in fact I'd believed help was only possible if you had a physical difficulty. My GP at the time didn't know there was a ABI service, based 200 meters from my home, he had to make extensive enquirers until he found this out.

To make matters worse I was given a IQ test by a Psychologist who declared "No problems" and then cuts to services meant I wasn't tested properly until 2014, the findings "Abnormal functioning" in some areas.

However given all the cuts it could still be the same in some PCTs, like many things it's a lottery about where you live.

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Morning Sealiphone. I get what you're saying. Physical troubles have been with me since 1985, with epilepsy, deafness, brain injuries, and heart disease. I get help from neurologist In the way of medication and check ups every 6 months. I get help from an electrophysiologist every 3 months. My heart is monitored by means of an Implantable loop recorder in my chest. Therefore, I suppose I was wrong saying that I'd not had therapy. Albeit medical treatment. I still end up in A&E with chest pain or passing out. I live in the Midlands where there are plenty hospitals. Many with specialized centre's. Dave

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