Hi, my husband suffered a brain injury in July 2013 and we wondered what help is out there as we struggle some days.

[jag66]

[ncmurphy1951]

headeay and the stroke assoc i found very helpful everyone else are self appointed experts ut do mor harm with poor advice / lectrures on how to lead your lives

[SASSYIAM in reply to ncmurphy1951]

I HAVE LIVED WITH MY HEAD INJURY SINCE 1990.ALL I CAN SAY IS HEADWAY WERE WITH ME ALL THE WAY.MY GP IS USELESS AS AFTERALL THEY ARE AS IT SAYS ON THE BADGE.GENERAL PRACTITIONERS.I ALSO INCURRED 2 STROKES SO AGAIN THE STROKE ASSOCIATION WAS AND STILL IS A FONT OF KNOWLEDGE.I AM NOW ON CARBAMAZAPENE AND MY NEURO TELLS ME I AM LUCKY COZ ALL I AM ABLE TO DO NOW IS SIT AND WATCH DAYTIME TV AND DVDS.BUT HEY I AM STILL ALIVE.I HOPE YOU FIND WHAT YOUR LOOKING FOR TOO.BEST WISHES.X

[jag66 in reply to SASSYIAM]

Thank you for answering and I will be contacting Headway, Best wishes

[jag66 in reply to ncmurphy1951]

Thank you for your help

[zannyboy in reply to ncmurphy1951]

HEADWAY are without question the finest organisation for a Brain Injury victim to get involved with. I am a very active member of Headway South West London and we/they always have loads n loads of Social Events which are sponsored by a firm of solicitors and Monthly Meetings where we always have a good laugh and get to know one another. Try looking up HEADWAYS website at headway.org.uk or phone [phone] freephone All the best.

[bikerlifestyle]

what sort of help do you need, do you have specific issues we can help advise you on where to seek the best help

and ncmurphy is right about headway and also we can just offer advice and support here (from brain injured individuals and based on our experiences) , but not real time help

i don't think everyone else are self appointed experts, most professional bodies and charities can offer competent advice and support so i wouldn't rule out other help

i would start by phoning the headway advice line which is a freephone number on 0808 800 2244

but it all depends on the type of help you need, and if its for specific issues or overall head injury help

ask away and we may be able to suggest where to find help

[cat3]

Yes jag, if you phone the helpline, as biker suggests, they can put you in touch with the appropriate agencies and also supply you with helpful publications. Just wanted to offer my support and good wishes. Regards, Cat x

[Hidden]

Hi there, sorry to hear about your husbands injury. What kind of help did you receive at the time of the injury before being sent home and what kind of help do you need now. Every brain injury is so different that it is difficult to know what to suggest.

This site and Headway have been the most useful to us since discharge. During rehabilitation we called on any expert that we could. The least helpful for us has been our GP as his view is my husband is fully recovered from the brain injury - which we know is not true but GP thinks a physical recovery is the end of treatment.

I am sure if you contact Headway they will be able to suggest help not just for your husband but for you too.

I hope you find what you need soon x

[jag66 in reply to Hidden]

Thank you for answering and I will be contacting Headway, Best wishes

[Taul-Zulloates in reply to Hidden]

Hi there,

Wise words meowth, although, to give GP's their due this is a very specialised field, ref. your comment that:- "Every brain injury is so different..."

I suppose its inevitable that they tend to concentrate on the "worried well" &/or etc., and they tend to see themselves as the gatekeepers of the N.H.S. and are being encouraged to in this by the government. Of course, they're only looking for short term cuts (rationing out health care), so, it is understandable, that even, if they don't actually think "a physical recovery is the end of treatment" it would appear that such was the case, which it is definitely not, all but a v.small % of head injury cases are 'whole life sentences':- it is the nature of the beast?

I tend to bypass the G.P.'s for anything 'head' related, I just e-mail my neuo. or nurse specialist with any concerns and we sort 'it' out from there. I would advise jag66 to re-set the lines of communication like this, or similar?

Regards T-Z

[Hidden in reply to Taul-Zulloates]

I agree completely and I do have sympathy with GP. The only issue being that they are indeed the gate keeper of many NHS services so unless they recognise a problem or accept a problem it is difficult to get a referral to specialist services.

This is also true for mental health issues often associated with brain injury such as anxiety and depression.

I agree on your suggestion re bypassing the GP and going for neuro or specialist so long as you don't need the GP to get to these.

M

[Taul-Zulloates in reply to Hidden]

I'm afraid the gov. are using the 'NHS reforms' to sabotage and get the hospitals to fight the GP's and, of course, from the outside looking in it will look like a mess! Then they will 'step in' using it as an excuse to break up & privatise all health care, and then there will be 'noses in the trough', big time.

As for the bypassing (I don't mean not keeping GP's "in the loop"), down here in west Cornwall they seem very 'relaxed' about the channels of communication (pragmatic) it may not be the same in all areas with all Trusts, but perhaps that's the point (doing things pragmatically), shouldn't it should be whatever works? Making GP's gatekeepers is only going to create (artificial) 'choke points for treatment' and people will compete for control of these - it is going to get messy - and more to the point it will look bad, as if, hospital Drs are fighting GP's? And, who do we see coming over the horizon - none other than David Cameroon - Privatisationman....

I've got a daughter in M.H. nursing and from what she says they're destroying the service from the inside...

I know I sound paranoid, but sometimes they are all out to get you!!!?

[Hidden]

Hi, We have lived with severe brain injury for 13 years. It does depend on what help you are looking for and how severe the injury. As others have said each is individual and treated differently. Our experience is the best help comes from family and friends from a support and improving condition point of view - professionals tend to have given us the worst prognosis and pretty much gave up hope from square one as the injury was so severe. For practical help it again depends on what you need as we have found everything is dealt with by different departments and bodies who dont appear to communicate with each other and different council or health authorities manage things differently. These chat sites are as good as anywhere to get you pointed in the right direction though.

[jag66 in reply to Hidden]

Thank you for answering and I will be contacting Headway, Best wishes

[philstretchdavis]

I had a brain injury in October 2004. There was nothing and no one for me for 3 years. Then I was given a social worker. I refused their help then as I had coped well enough on my own. The only advice I can give is: don't be worried about making mistakes, this is the dawning of a new age. And look on the bright side of life: every time you see a film, it will seem like it is for the first time.

[jag66 in reply to philstretchdavis]

Thank you for answering and I will be contacting Headway, Best wishes

[watso]

If you contact your GP and request a referral to social services you may then be allocated a social worker. You can ask them about your entitlement to direct payments or individual budgets to buy in care and support if that is what you are needing! Our son has been allocated 8 hours a week.... 6 hours support assistant for outings and 2 hours from a psychologist both provided by Neuropartners( North East of England) Its worth looking into! Good luck!

[watso in reply to watso]

All 8 hours are paid for by Social Services!

[headchild]

We have lived for 20years without help apart from social services putting in adaptations. I managed to get a neuropsychology assessment done via neurologist in 2018 to enable me to try and understand how my daughters brain was functioning. She doesn't seem to fit in anywhere these days and still only a young woman.

[clivekeen]

Well I got no support after my brain haemorrage kings collage hospital kicked me out after it took over 2 years to get my disability I had sorted with them 3 years later got help was in contact with kings they did not want to help and support me gp still no good after almost 5 years difficulty with the ppi interviews last week they understood more Got referred to headyway a year ago go to support group with family even they can't support my needs as I work part time can't get the funding for me what can I do carry on doing what I can on my own kings signed me off now with help if needed when contact specialist nurse he never gets back to me even e mail him ignores it what can I do now