Since I posted on here a few weeks ago seeking guidance with regards to my Son who sustained a TBI in 2019, things have got worse with his drinking becoming out of control. He got arrested and held in a cell for 12 hours and is awaiting a letter from the police as to whether he will be charged. My worst fears are becoming a reality and I desperately need help as to how to get him to see that this self destructive behaviour is dangerous. I have booked an appointment for him with the GP for Friday but I not very hopeful that they will be able to help much - my experience is that GPS don’t really understand the effects of severe TBI’s and therefore are not really equipped to offer any real advice. Nor do I think they are the best to alter the prescribed medication for TBI aftercare. I’m thinking of looking for a private a neuro specialist but not really sure if I need a psychiatrist or psychologist?? I would welcome any advice please.
Things get worse - even more desperate for advice pls - Headway
Things get worse - even more desperate for advice pls
For extreme behavioural issues and the possibility of your son's medication failing him, I'd be looking at a consultation with a neuropsychiatrist.
Neglect of the NHS is a tragedy. We're forced to pay for treatment or wait months/years for appointments in all departments (10 months for me so far).
Maybe phone the Headway helpline for professional advice on freephone 0808 800 2244 ?
I truly hope you'll find help for him Lisa ; it's rotten being so frightened for your son. Brain injury comes with anxiety enough without the often scary after-effects.
All best wishes, Cat x
Thank you Cat for your reply and kind words. I’m so frightened x
Oh I do feel for you LIsa. I had a long period of desperate worry over my own son after his dad & I separated ; it felt overwhelming. (He turned a corner eventually & is now my best friend).
Have you phoned the Headway helpline yet ? There's help out there ; it's just accessing it and they might have useful advice/information. And if you're taking the private route it'll speed things up massively.
Do you have support from friends or family m'love ?
Thinking of you... Cat. x
Hi Cat - I spoke with Headway today and the Lady was so lovely I ended up crying 🤦♀️ She has emailed me a list of contact numbers and advice. She has confirmed that he would benefit from seeing a Neuro psychologist, so will make an appointment to see someone privately asap. Thank you again for your kindness - it is very much appreciated xx
I'm glad to hear you've talked with a Headway advisor Lisa ; it's a big step towards taking back some control in getting your son the help he needs. Getting to the root of complex problems usually takes time and patience so it could be a long ride, but I hope you're headed for better days
Do keep in touch m'dear..... I'm thinking of you. Cat. x
I agree with your thoughts on GP’s. I used a Neurologist in Sheffield, last time I needed to change my medication.
Hi - thank you for taking the time to reply. Had the appointment with the GP and, as expected, not very helpful or productive. She has changed his antidepressants and will write a referral letter to local hospital for an appointment to see neuro psychologist, but told me it will be a long wait - possibly a year. I said I would go private as feel we need to address issues asap.
HI Lisa,What Cat3 said.
I will add a few things for your peace of mind.
In the history of medicine they got in to the habit of putting things they hadn't figured out get into psychiatry. Even the study of vitamins and minerals ended up there.
Brain injury isn't well understood - so you can easily find docs who just look at wounds, and that's all. A lot of brain inury involves wounds that are not visible, though.
A neuropsychiatrist is an MD, a psychiatrist, and has also studied the brain. So, that specialty can diagnose injury not caused by visible physical damage. They also get tell if something is from the brain or a mood issue etc, and also how your son's general medical health may be impacted. Because they are a doctor, they can help medication sorting out.
It is a scary thing, and what may help a little is knowing what the players do and what sort to ask for. In general Headway helps with that.
Also ask what resources are there for you, such as friends and family,y support groups locally. There will be zoom options most likely. Not a group person? Go anyway - people have lots of helpful ideas and can tell you.
I am in Canada, not the UK, so it may be different there, but I will say the example anyway. One man got his diagnosis filed with the police, so when they pull his file they understand his circumstances and are much less likely to handle the situation. Another said he had an entry as well, recommending a style for interactions - because when challenged he can't stop himself from being aggressive, but if not challenged doesn't get that way. In both cases it was a neuropsych who set this up for them.
Drinking and having behaviour issues don't happen all the time , and they are also not uncommon.
Hang in there, and remember to breathe.
Leaf x
Yes, it is a scary thing.
Hi Leaf - thank you so very much for replying to my “call for help”. I have today spoken to Headway and we also had an appointment with GP. I am going to make an appointment for my son to see a private Neuropsychiatrist asap, as the waiting list for an NHS appointment can be up to a year. Thank you again for your advice and kindness x
So sorry to hear about your son and definitely seek advise from headways like others have recommended .. and seek help for yourself , family and friends if needed ..as you will get help to deal with this … I had lots of dealings with mental health clients and the police have been fantastic with them ( though my previous job) I’ve actually found them better than the mental health team and also pushes the patient into getting the support they need .. take care sue x
Hi Teazymaid - thank you for taking the time out of your day to respond. I’ve spoken to Headway who were very kind anc helpful, and I’m going to see if I can get an appointment asap with a private neuro specialist. The NHS waiting list is so long - up to a year 🤦♀️ Thank you again for your kindness x
U need to get social services involved, he should have a social worker!! I drank for ten years post my injury, cost me my gal bladder. Social services are wrapped up in crap at the moment but he should be their no1 concern!! Try headway the tbi charity too. Have been very helpful to me, good luck & please use this site to if nothing else?! Vent u frustration. We are all keen to hear u both progress ok?
Good morning- thank you so much for replying. I’ve contacted Headway who were very helpful and we’ve also been to the GP (although as expected not much use!). I’m going to try to get a private appointment with a neuro psychologist as the NHS wait list is over a year long. The excessive drinking and low mood is my biggest concern atm so fingers crossed 🤞 Thank you again for your kind words x
Mabe the following site can be of help (there are also many other sites on brain injury out there):
Hello there and thank you so much for responding to my post. I’ve contacted headway and they have provided with some good information and contacts, so intend to make an appointment asap to see neuro psychologist. Thanks again x
Sorry to hear this L. Neuropsychiatrists are the specialists in drugs post BI. Neuropsychologists offer emotional and practical support with developing practical strategies to deal with the effects of BI. But as others say, do also ring the Headway helpline.
Good morning and thank you for taking the time to respond to my post. I’ve spoken to Headway and we also met with my Son’s GP yesterday. She changed his anti depressant (I agree with you that it should be a neuro psychiatrist that is doing this not a GP) and is going to refer him to neuro psychologist- also the wait is over a year atm. I’ve told her that we need help now so am going to book a private consultation and use someone from the recommended list that Headway provided me with. Thanks again for your advice - much appreciated x
Glad that you found the Headway helpline supportive Lisa, and that you are finding him a neuropsychologist. I can see from your previous posts that you've been going through the mill with this. I'm shocked that he was sent back to work so quickly. Is he living with you, or nearby? It must be excruciating. There's a whole lack of self awareness that can occur after BI, which can't be helped by the drink/ drug issues. You need support too. Have you thought of Al-Anon? So sorry you're going through this.
I think you should mabe ask the Dr to get an appointment with the psychiatrist and get the drinking stopped he Could be doing the drinking to block out the pain and block out the depression and effects of livingwith a brain injury at the start of our brain injurywe think thers nothing wrong with us we don't see the change s . Drinking is a no no for us with brain injury be honest with the psychiatrist with the drinking they will be able help with that and as for depression I am on alot of meds for that but didn't see them helping really till the psychiatrist put me on quetiapine it doesn't fix us but that 1 helps a bit.ps I am anti drugs as these pharmaceutical giants are just oot to make money but a felt a difference with the quetiapine it seems to help a bit ,but every day is different for us .hope you get help and best of luck.
Sorry to hear what you are going through, my 32year old son sustained a severe TBI around 18 months ago and I completely understand what you are going through. We also arranged for our son to see a neuropsychologist privately and she has been a great help. We've still got a way to go but she referred him to our local community neurorehab team who are providing OT and neurophysio support along with sessions with a neurorehab consultant who diagnosed PTSD along with depression and provided advice about medication(this is all free on the NHS). We also could have accessed support from their neuropsychologist but our son felt more comfortable continuing to see the private neuroosychologist as he trusts her and has built up a good relationship with her (it's expensive though!). I really hope your neuropsychologist can refer you to a similar service in your area as we didn't have to wait long to see them and they are all so lovely and understanding. She also wrote up some reports to back up how the brain injury is affecting his ability to work and we were able to use them as evidence when claiming benefits.I wish you and your son lots of luck for the future x
Thank you so very much for your kind words; it’s so hard isn’t it to see your grown child struggling. Sounds like you have managed to get a great neuropsychologist - could I please ask how you found her as I’m unsure how to proceed with this. Am reluctant to just choose one off of a website so would prefer recommendations if possible. Thank you again for your kindness, and sending you a big hug and all best wishes to your son x
Aw thank you so much xx I got the names of a few neuropsychologists by ringing our local Headway venue. Just to give you an idea we are paying £120 per session so it isn't cheap but she comes to the house. Wishing you lots of luck and am happy to chat further if it would help xx
Thank you - Headway have sent me a list also so will start there. £120 is cheap compared to the prices that I am being quoted - we are in Essex but doesn’t seem to be any in the area so will have to go to London 🤦♀️
Hi - thank you for your reply. No he doesn’t have the BI card, unfortunately he refuses to get one. In my opinion, it represents again a denial in relation to his accepting the impact of his injury. He says he is “not disabled”.
your gp has a duty of care for your son, you have a few things you can do,like ask for a second opinion. Complain to the NHS, Change gp surgeries. You can ask to be referred to a specialist for your son
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