Were you offered cognitive/psychological therapy after your injury or just discharged without it?

I never got told about my injury, only discharged with stiches in my head and no help.

[iforget]

I had a neuropsych evaluation approx 9 months after my accident and first lot of therapy was in place about 14 months post injury and was a dismal failure...more suitable therapy came much later...but when I was initially discharged there was nothing in place at all and I was readmitted to hospital a week later.

The second discharge from hospital came with better follow up which led to the neuropsych evaluation and access to further therapies that were more helpful.

[Danslatete]

I was discharged when i discharged myself, apparently. So i went home and needed a lot of support from family and friends because i wasnt aware anything was wrong with me. I was at a lot of out patient appts. tho.

It was about 9months- 1 year before i got the neuro psyche and brain injury consultant who kept me going back to rehab and headway and aquied brain injury social workers etc. Mr Gentleman is a star. He took the time to explain why i wasnt coping and why i was getting angry and why i couldnt take part in everyday life, over and over again. Eventually it stuck in my addled brain

[sarahbia]

I spent five months in hospital and during that time I was not given any kind of rehabilitation for my head injury. In September 2012, two months after my discharge, I had a crainioplasty at another hospital to replace the large piece of skull that had been missing for seven months and after the surgery I was discharged by my neurologist. I wasn't even made aware of the effects the head injury would have on me, I just thought that my memory had suffered. After finding out through Headway that I should have been referred on to a neuropsychologist my GP reluctantly agreed to refer me and now I am waiting but who knows how long that will take.

[julieljs in reply to sarahbia]

Hello, just reading your post, my 11yr old son is going in on Tuesday to have this operation, can you tell my anything about the procedure please

[sarahbia in reply to julieljs]

Hi,

I'm sorry to hear that your son has to have this done, I hope everything goes well.

In my case the missing bone was replaced with acrylic cement. I was frightened that they would shave off my hair, which had just grown back after the crainiectomy, but fortunately this didn't happen.

It wasn't particularly painful, I was anaesthetised obviously, and then afterwards I was given adequate medication. I spent four or five more days in the hospital and then I was discharged when I felt ready.

I had staple-like things left in my head on discharge and the district nurse came to my house to take them out a few weeks later. Half of my skull is now made of acrylic but it isn't obvious, I don't have any bald patches (there are little spots where the incisions were made but they are hidden by my hair), to me it feels quite uneven but this isn't really visible to anyone else.

I had my cranioplasty done at Salford Royal with Mr Leggate and I found him and the staff there to be excellent, except on discharge when I wasn't given any rehabilitation but I had been sent there by another hospital so maybe it wasn't really their responsibility. I was quite frightened about having the surgery but everyone was very reassuring.

I hope this helps. I'm sorry I can't give you more detail but I don't remember very much.

[julieljs in reply to sarahbia]

Thanks for your reply, jack has to have 2 large areas replaced with artificial bone due to him still growing. He has alot of fluid which is noticeable one side. I wish it was over, but also want it done, we 6 month post accident.

[sarahbia in reply to julieljs]

I really hope everything goes well. I think it's quite a standard procedure. Mine was 7 months later, I think they do have to leave it for at least 6 months but I know what a pain that is. Good luck x

[SAMBS in reply to julieljs]

Hi Julie, hope your son is in good recovery mode since his op 11 months ago. xx

[kellysuriol]

I was also stitched up and sent home, no warning. No advice. Took one day off work, I had what I thought was an obvious headache that hasn't gone away since, that was last May. Now I am signed off work :o/ have constant headaches, making simple decisions feel like life or death ones, and am I lazy, unmotivated, or just lack concentration?! I have no idea but I know it frustrates the hell out of me. But on a positive note, I have a neuropsychologist appointment in a couple of weeks, hopefully this will help me cope with pain and improve focus. But it has been a fight, I have had to research and tell the doctors what I need to happen. I have come across bio - feedback thearpy, which may be used, I don't know. But worth looking into I think. Also mindful mediation. Still to find a solution, but I have learnt a holistic approach is required.

[cat3]

Like sarahbia, I was treated at Salford Royal hospital. During my two month stay the standard of care was second to none. I had several consultations with the neuropsychologist and cognitive therapist which were probably useful although it's all rather a blur now. I was given contact numbers, on discharge, for the specialist nurse who had visited me during my stay.

[Flumptious]

I spent a good few months in a Rehab. Unit., that sort of eased me back into going home., and while I was there I used to see a psychologist regularly. Even when I was back at home, only going in on two days a week, for physio, speech therapy, etc., I had an appointment with him, every week. I really enjoyed them, and I think they helped me understand how i was, now, and not worry too much about it.

He has left that hospital, now, so I never see him, but every year on my 'anniversary' (when I return to the hospital, to celebrate how well I've recovered), I send him a 'Thank you' card, at his new hospital.

[suee11]

No help to start with. I was discharged home with just a bath seat and crutches for the physical problems! However, Headway did eventually appear on the scene (co-incidentally) and at last there was assistance in helping me appreciate what happens with a brain injury like mine, and Headway referred me to a Clinical Psychologist. A couple of years later I needed more help and was referred to a local counsellor. Much later, during a Clinical Study for some new tablets, I had an episode of outrage and depression, and the professor running the study was concerned to find I had not been on any programme of rehabilitation, he thought it was probably on account of the lack of funding in my county.

[Hidden in reply to suee11]

I'm very sorry to hear this, but it comes as no suprise, it is a typical case of brain injury neglect on the NHS. The sad part is it seems some people DO get onto some type of rehabilitation programme but it seems to depend on where they live and whom they get seen by. I probably live in one of the worse funded/per capita regions, we've all heard about the cases of serious neglect in Staffordshire hospital, I was treated at Pendlebury Children's Hospital in Manchester, they did most obvious bit and saved my life but failed miserably in the in-patient and aftercare I received, the nurses were unsympathetic, I couldn't sleep because I was one in a room amongst many with noisy beeping machines, I can't remember anyone asking how I was feeling, explaining why I was there, what happened, etc. It was a really depressing place and the nurses were just there to note down my coma score, you'd think they'd try to get your neurons firing again with simple conversation and sympathy, but no. Then, as soon as I was walking again (BTW nobody told me to try and walk, I did it without permission, luckily I didn't fall and bang my head because nobody was looking) I was fit to leave hospital and that was the end of my hospital care, no cognitive assessment, no psychological therapy, a physiotherapist came to check my coordination a few weeks later, but that's all.

[suee11 in reply to Hidden]

Thanks so much for your response. Nobody told me I had a fractured pelvis, either, until I had walked to the bathroom with a frame, the head injury was also not mentioned for quite a while. The double vision was another symptom that arose. I thought I would be back in the office in a couple of weeks, not knowing these injuries had been so serious! I even planned going back to the stables. How little had been explained or understood after the coma - perhaps it was all a dream - but in hindsight, the volume of Get Well cards should have alerted me to the 'seriousness' of the accident! I didn't know about my GCS score until I went back to Outpatients and asked the direct question for a project at Headway - we were each making a slideshow of our accident, the outcome and the future as we hoped it would work out!! All in all, I hope you continue to make improvements and life goes well for you. Thinking out loud, I am glad we're still here!

[leeleeleelee]

no help at all

woke up asked what am i doing here

doc said making sure you dont die and that was that

then spent four months or more in and out of it unconshouis

in the dark no meds at all

and no info as to what to expect

hard work for me and family

above all memory stuff i will never

forget the two year head ache

ouch to you all

[Hidden in reply to leeleeleelee]

I feel for you man, you should have been getting the most help given your needs, but ironically it seems the lesser your disability the more help they're able to provide.

[HelenWillmetts]

I am really sorry to rub t in! But I have received a phenomenal amount of aftercare (almost too much) my SAH was treated at frenchay hospital and once I was deemed well enough, went to their brain injury rehabilitation unit on site. Here I receive OT, hydro, psychology and speech and language therapy. They are very keen to tailor a programme to suit me and get me back on my feet, but like everyone here, I am keen to get home! My stay here is being funded by my counties primary cre trust.

I have not left frenchay for 4 months and have been in rehab for 2 of those months. Hopefully wont be much longer and I can take my life off pause!

[Hidden in reply to HelenWillmetts]

It's good that you're honest about the standard of care you received. The more that people are truthful the sooner inequalities will be addressed. And even if I'm jelous, the care you've received is justified and after a brain injury no matter how minor we should all be granted such care. I just don't understand how in one region someone can receive no rehab and in others they can. Who's making these decisions and how are they justified?

Don't rush it, slow and steady, when you're home you'll wish you were back in rehab.

[Hidden in reply to HelenWillmetts]

Hi Helen,

Treated at the same hospital , I had surgery, a craniotomy for the removal of blood clots Aug '13 . I was sent out after 7 days. I managed to find an Occupational Therapist myself who was great but sadly her visits did not last long. They ended at the beginning of Dec '13.

Since then nothing.

I visited a new GP last Fri. I mentioned referral to a Neuropsychologist and was met with a blank look. "There is no point because I don't know if there is one and even so it would take at least 12 months" She tried to give me anti-depressants! I am struggling and fed up mostly with the DVLA. But I am not Depressed.

IF it is not Paracetamol, it is antibiotics and as a last resort Anti depressants !

I feel frustrated!

I have had no follow-up or support and I have tried so hard alone. I feel lost.

Turquoise

[coetzeegisela]

NO - FOUND PHYSIOTHERAPIST AND NEUROPHYSIOTHERAPIST SELF.

[coetzeegisela]

NO - FOUND PHYSIOTHERAPIST AND NEUROPHYSIOTHERAPIST SELF.

[SAMBS]

no I wasn't - however being in France, doesn't help you, I'm sorry. /just be persistent if you need answers. . Have you talked to Headway staff. It was their advice tht I followed because they thought I should see a neurologist . None of us knew that in my case, I would get landed with a french one who looked as though he should have retired 20 years ago and probably doesn't understand B I's.

[SAMBS]

can someone or anyone tell me what sort of Therapy you got from NHS after your B I's - I guess that's what I'm looking to get over here, I don't know what therapy would help me and seems like the docs here don't even know the meaning of the word therapy - unless its preceded by PHYSIO- or PSYCHO!

[Kirk5w7]

Hi Shirley, looks like we're following the same links at the mo.

I got daily physio to help me in the rehab unit, they taught me to walk again, and the care assistants and nurses taught me to care for myself, bathing, making tea, coffee and toast etc, also feeding myself again.

I remember one of my first meals in the rehab unit I had soup which I told everyone was fantastic then proceeded to tip it over the table, it caused much hilarity but earned me a plastic apron for the next few days til I'd gained control of my arm!

I also had a clinical psychologist and speech and language assessments but they were generally ok so no follow up needed there. I even beat the assessor with the mental arithmetic test and she had a calculator!

So it's mainly, balance and some coordination issues, plus my sight problems came to light( no pun intended) as we've gone on .

Hope this helps Janet xxxx

[wannagetbetter]

I wasn't offered any help\ therapy initially. I thought it was the anti-seizure tablets that had me dulled and sleepy all the time and that was why I wasn't thinking straight. eventually nagged the surgeon to keep reducing them till i came off. realised a month later I was still feeling the same way as I thought I could go back to work. complained to the surgeon at one of my check up and then and only then did they suggest referring me to a neuropsych. Just remembered that I went to my GP also and they referred me to IAPT solutions who seem to be checking my depression and anxiety levels. In the meantime, I learned of headway via the braintumour charity. I started calling everywhere desperately trying to get help as I new something was wrong.