A move.....but maybe in the wrong direction!!

[millie67]

My partner suffered a severe TBI and Hypoxic brain injury in November last year and has remained in QE Birmingham ever since, he has had great care there in the Critical Care unit and then on the ward, but has unfortunately remained in a Vegetative State since a few weeks after the accident.

The powers that be deceided at the end of last week that John no longer needed to be at the QE but should go to our local hospital.......bad move, when I finally got to visit him they have put him in a totally inadequate side ward with no windows for light and orientation between day and night, and worst of all no fresh air. The nursing care there is unfortunately not what he needs.

We are in a position where they dont really know what to do with my partner, he is not ready for rehab, but on the otherhand he is not benefitting from being left on his own in a hospitla bed all day!! Its a scary road we are travelling at the moment, feeling at the mercy of the NHS and what they decide to do with him, it feels sometimes like you have little or no say about your path of care.

My life feels like one long battle at the moment, the road we are taking has so many twists and turns, hopefully one day we can get to a destination we can all relax and be happy at. Its sad to think that my lovely partner, once so happy and full of hope for the future is now lay in a hosptal bed, unable to communicate with myself and our children. Life can be so cruel!

[Hidden]

Hi, how are you. Is there a patient & family councillor available to speak with. I'm from CHCH, NZ and at the local hospital here there is a psychiatrist who family/patient may speak with.

Agree, the little things at this stage are part of the steps to well being and progress.

Hope you are doing okay.

[millie67]

thanks ginakiwi, yes I am hoping to speak with someone soon about his care, its getting to know who does what and who has the ultimate power to make the decision, also nhs funding is a bit issue, they call alot of the shots from what i can see, hopefully things will get sorted.

This forum is great when your having a bad day there is always someone there to make you feel better x

[cat3 in reply to millie67]

Oh millie, my heart goes out to you. We,as a family are in a similar position with my ex husband(father of my son &daughter). He suffered a haemorrhage nine months ago and the scenario you describe with your partner sounds all too familiar. Although he is my ex, Geoff and I were good pals. Like your partner, he was so dynamic .......... could never sit still and now he doesn't speak or stand. I suppose it's one step up from PSV.

My son and daughter have had a rotten deal, first with my haemorrhage 15 months ago and then Geoff's. I had a bad time initially (apparently) but with wonderful care made it back to the real world. Geoff had identical care with the same nurses but his problem was more severe.

It really is all about waiting and more waiting but each case of brain trauma is different from the next and there is always hope.

Stay in touch. cat x

[Hidden]

Really sorry to hear your news it must be a very difficult and frustrating time for you.

We to started off in the QE where they have an excellent neuro science ward with staff who understand brain injury. We resisted being moved to our local hospital in Worcestershire as I doubted that they had the specialism.

Beyond that our situation is very different to yours as three weeks after his accident my husband was able to walk with support though he still had PTA so was far from ready to come home. He had a right frontal lobe bleed but did not have surgery.

We were transferred to a neuro rehab centre. We were on the waiting list for the NHS centre in Birmingham but having become frustrated with the waiting list and the need for urgent rehab care we chose to go to a private centre. At the centre they dealt with patients at all stages of brain injury. At the centre there was a full range of specialist working only on brain related care. I have no idea if this is a solution that might be viable for you and your partner as I don't know what his position is but it may be worth asking? I wouldn't like to give you too much hope in case it is not for you. The centre that we went to was Hunters Moor Neuro Rehabilitation Centre in Hall Green Birmingham - the rooms are larger than the "required" size and all very light and bright. the en-suite bathrooms too are large. They have a website if you would like to take a look and they deal mainly with insurance cases - indeed I think we were the first patients to pay from our own means.

I hope that you find something better soon you both deserve it.

Love and hugs x

[millie67 in reply to Hidden]

Hi thanks for the message, which hospital were they trying to get your husband transfered to? Hunters Moor has been mentioned to us also as a possible rehab unit in the future, although I have heard quite alot of negatives about it, I can not comment or form an opinion has I havent been round to have a look. John would still meet NHS ongoing are as his problems are so bad. Glad to hear things are looking better for you and your husband, its such a life changing event, no one unless they have been through it can appreciate the roller coaster we are on can they? hugs xx

[Hidden in reply to millie67]

Hi there

The NHS Hospital was Moseley Road - here is the link bhamcommunity.nhs.uk/about-...

Our experience of Hunters Moor was, on the whole, excellent. My hubby was however in the transition area so I can only comment on that. He received: Physio, Speech Therapy, Cognitive Support, Neuropsychology etc. His room was excellent. He was in in their early days when they were not full so the care support was very good - I am not sure what this would be like when fully occupied? The only issue that we had was that we were not told that the neuropsychologist had left part way through our stay and that they were in the midst of appointing another - yet this was the very care that hubby required. When we tackled them on this they were very honest and we agreed to move him to home care - I do wish though that they had been upfront. The staff met with us every few weeks to give us an update on progress and enabled us to ask questions.

I turned up at both Hunters Moor and Moseley Hall unannounced to get a feel for what it was like when not expected (not really fair on the staff but hey) - I came home feeling really down after both visits a little scared by the environments - but then accepted that it was the care that we required and put my positive head back on. So for us it helped - but that was back in July/August last year. I later had a booked appointment where I met with the team but when I was also shown around all facilities - they did spend several hours with me.

I hope that you find the help that you need very soon - do keep on nagging people until you get what you deserve, something that you can feel comfortable with. I should imagine being starved of light and fresh air is the worst thing as it is the sensory element that is important.

I know it takes a lot of energy fighting your corner when the very person you would normally turn to isn't there to help you - but it is worth fighting to get the best possible care and hopefully the best possible outcome.

Hugs xx

[Dorsetcharlie]

The only advice I can give you is to make a nuisance of yourself. This is not easy when you're trying to keep a lid on your own fear and grief, but I found that I always got action and help when I went evil twin on them. Other than that all I can do is send you a massive virtual hug.

C x

[millie67 in reply to Dorsetcharlie]

Thanks honey, I shall have to find my evil twin aswell, I think she is starting to make herself know a little already (having problems with family members etc as well) I took my client liason officer from my solicitors to hospital the other day and hopefully she has started to get things moving, its good to have someone not emotionally attached fighting your corner for you aswell I think. Hugs to you both xx

[Hidden]

A UK friend of mine mentioned to contact PALS (patient liaison services) to get the matter reviewed.

[ricozoe]

hi millie so sorry to hear your story,all my hope goes to you.

[brighton88]

GET YOUR MP INVOLVED

[headwayuk Partner Headway]

Hi Millie,

Thank you for your question, and I'd like to apologise for the delay getting back to you. As always it's good to see the excellent advice and support from our members.

Can I suggest you contact Sue Best, the Headway Acute Trauma Support Nurse for the West Midlands to discuss this? You can phone her on 07827 334 920 or email [e-mail]

Her role is to provide support to people in the early/acute stages after brain injury, generally involving the move from hospital to rehabilitation or home.

Please do let us know how things develop - you can also contact our helpline on 0808 800 2244 or [e-mail] to talk things through, get details of local support for the family and further information about brain injury and rehabilitation.

Best wishes,

Headway.

[millie67]

Thank you Headway, I am already in contact with Sue, she has been a great help all the way through Johns stay at the QE, I am now getting the help we need. I am hopefully getting a case manager who will assist us further with Johns medical care.

[fred57]

I was given a good beating outside a pub through no fault of mine and several years later started getting cluster headaches,and was decided i needed a shunt incerted in my brain,as i had suffered from menegitis earlier in my life and the bang on my head had effected my brain by causing a narrowing over my right eye which was causing a pressure point over the eye,and incerting the shunt caused me to get menegitis again.They then decided to burn the nerve ends over my eye,i then released from hospital and forgotten about.I have totally changed from the old me,im now very quiet,withdrawn,and lack confidence in myself.Inever go out anymore,and am the complete opposite to the way i was - used to be,and hate myself most of the time and upset people most of the time.

[millie67 in reply to fred57]

That's so sad to hear, its such a shame you don't have any support, have you tried your local headway. It sounds like an awful thing that happened to you so sorry to hear your story....sending you lots of positive thoughts and hugs, you need to remember the person you were before and what you still can be, its amazing what we are all capable of....I see some many stories..try and stay positive xx

[elizasmart382]

Hi Millie67 all i can say really is be as patient as you can. Recovering from a brain injury is often a very long process. But what i can say is its a brain injury and like anyother injury things can get better! I had a hypoxic brain injury but a buddy of mine from headway was in a vegitive state for years and was still improving 8 years on. Keep up the faith!