Hi all! I just thought I'd ask how everyone has found the support and efficacy of their GP following a brain injury? I've always thought so highly of our GP, but following my husbands TBI I am left feeling completely let down, appalled and at a loss of faith with them. The guys from Headway said this is quite common as they often do not have the understanding of life after BI's. I appreciate we are also in the throws of a pandemic too, but our after care has been frankly shocking!
GP care post BI!: Hi all! I just thought I'd ask how... - Headway
GP care post BI!
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MBG23
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Mine was a couple years ago I was left to my own devices things will get better xx
My gp is also clueless about brain injury, even the after care from the hospital is non existent. I spent 5 days in a coma and then 10 days on a general ward after my TBI and was then discharged home and left to get on with it on my own. The critical care from hospitals is excellent but the aftercare is a bit of a postcode lottery. I think my gp isn't a general practitioner, he is more a general pratt.
Haha yes our practice seems to be clueless! Such a shame that there is such poor after care. My husband left hospital 5 weeks after a severe TBI. He was on the waiting list for a rehab centre to spend at lease a month with but the waiting list was very long, so the hospital asked if I was happy to care for him at home and discharged him with a box of paracetamol and literally no advice whatsoever! 👎
You got one of those too, I thought it was just my surgery that had them. Never had any support from any medical people. Was left and still am dealing with things on my own.
I am also on my own with know family and I know how difficult it is , and to also be discharged into the care of a GP who doesn't know how to care for you is incredibly frustrating. It's a really sad situation in this day and age. It has also been really difficult for me to get referrals to any type of specialist. in regards to my original TBI in 2016 I have had know help from anyone in the medical profession since I was discharged from critical care at the hospital. I changed from my original GP and things are know different with my GP now. I don't expect them to have superb knowledge of brain injury but I do expect them to know where to send me too. I have got to the end of the line with trying to get anywhere with my TBI because it's just so difficult .
Hi there, I'm under GP care and I feel the same, I just don't think they have the awareness to be honest because it's quite complex and they really don't know a lot about it. What I generally do is go on the Headway help desk if I'm not sure of a symtom and they will email me to explain and then go back to my Doctor and try to explain what I've been told. It can work and some do listen and look into it. Others if I don't get anywhere then I ask to be referred to another GP. Maybe try it out and see if it maybe works for you .
What a shame that this is so common. My husband had a sever TBI and a large piece of his skull removed. The first time we saw the GP his hospital notes weren't yet sent over to them, so I explained what had happened and the GP laughed at me and side "We'd call it a head injury, not a brain injury"?!? We have to see the funny side, but what a patronising plank 😂
He sounds like a bit of a dick head sorry but been dealing with these prats that have no idea what we go through every single day and if we are lucky and I mean really lucky we might have a day off the pain, memory problems cognition the list goes on, but its not the case, and to be taken the mickey of is not on. I think we know more than they do when it comes to our brain injury.
This is what many of us find to our cost. I was lucky my GP was open to discussing my problems and learning from them but it didnt help me gain better help with coping with my issues.
I was pointed towards acupuncture to help with my nerve pain and encouraged to seek other ways to help.
I found Tai Chi helped my balance, reflexology “joined all the dots” again for me and a Vision Therapist also helped with my balance, spatial and visual problems. All im afraid privately and it is not cheap. The NHS isnt geared up for all of this and Long Covid will make it worse( i call it post viral syndrome and it has been around for many years, just there are more voices shouting about it now).
You have to keep reminding them you are still around and in need of help. Good luck.
J x
Hi MBG. My GP laughed at me when I questioned if my sudden loss of taste & smell could be forewarning of a brain issue. A few weeks later I was blue lighted to hospital with a Subarachnoid haemorrhage. My consultant confirmed the link between olfactory disturbances and neurological emergencies, and was amazed it wasn't common knowledge for any GP.
GP had obviously been informed of my hospitalisation and brain injury but when I saw her for a meds issue a couple of weeks after discharge, before I even took a seat, she gave a wide eyed/hand in the air announcement that anything brain related wasn't her remit.
Hospital notes stated 'Discharged into care of GP' .....she didn't even ask me how I was doing . I never spoke to that woman after that day.
It seems most of us were left to our own devices, although I did change my GP to one who referred me to a brilliant neuro-consultant who arranged treatment for endocrinological issues. x
That's absolutely awful, I'm so sorry to hear your story. We are now going through the neuropsychologist and consultant neurologist, he has referred him to an endocrine consultant now too... Hopefully we can all use the specialists from now on, but I don't really see why we that's not just standard procedure anyway?! x
It seems (sadly) the norm is to chase up further help ourselves via our GP. I've found that once you've made it face to face with the consultant they tend to see issues through and tie up any loose ends, albeit with 6-monthly (or longer) appointments. I suppose it's an inevitable outcome of government cuts 🙄 x
Not quite for myself, I didn’t get rehab at the time ie just after the accident because I was convinced I was fine!
Which with help from my local Headway I got many years later.
But for 6 months I not only was seen regularly for phased return/check my progress, and if i did ring up, they always insisted on seeing me that day, often within the hr! Can only assume It was to keep me from ending up back in hospital and other fun stuff!
My GP is sympathetic, but with much less going on than your husband, I was able to go the private route because my firm had always paid for medical insurance. First neurologist wasn't a concussion specialist ( not all neurologists are created equal on that front) and tried me in some truly naf drugs for my headaches - couldn't sort me out, and referred me to neurologist number 2 who is a specialist in TBI, who referred me to a specialist concussion physio for manipulation on my neck, rehab for the oculomotor and vestibular problems, and graded exercise, and a neuropsychiatrist and his neuropsychologist for drugs and support - all absolutely brilliant actually. They all were giving me coaching in managing fatigue. They were the first people I saw that just thought all my symptoms were normal for someone with a traumatic brain injury, it was a huge relief - even though it was a shock to realise how much I was impacted by the MTBI.
Um hit and miss!
The GP who I was assigned to upon discharge was good and certainly understood more than I did at that point, I thought I was fine! Which I absolutely was not!
And firmly only slowly increased my hrs as I was on phased return to work.
Some have been utter rubbish, though not all, had one young un, keep me for a while at a appointment so she could ask me questions.
And equally had few who from the get go said I’m not a specialist etc, which again is fine.
Hi, my daughter was discharged from hosp after being in a coma with a subarachnoid aneyrisim to her local hosp for physio, the Dr's there had no clue as to how poorly she had been I had to tell them! She got 5mins of physio the day she was discharged home, the GP also had no idea how poorly she had been and after 5 weeks being home she is still waiting for physio! She has had to go private and we travel an hour for this, the GP says he can treat her blood pressure and everyday things but doesn't understand the injury she has had!, she is scared and feels abandoned by the GP, the hosp she was in first have been amazing and looked after her so well wish it was the same with the GP, who won't even see her! I'm sick of GPs blaming covid they have PPE the same as hospitals and you don't see them standing outside a ward saying "I'm not going in there patients have covid"!
It's no consolation to you MBG, but my experience (not having a BI) has been that too many GPs can be incredibly dismissive of anything they're ignorant about - and not bother to refer on to someone who might know more.
The lack of care and interest shown by some GPs towards patients can at times be absolutely breath-taking. Their aim seems to be to deter patient contact. To put it bluntly, I am of the view that some GPs are quite simply in the wrong profession.
My advice to anyone is that if you have health needs and are under the care of a good GP practice, don't move away from their catchment area! All GP practices are certainly not the same.
GPs as the title suggests are general physicians. They have done more training than many specialists, and have broad knowledge.
They have to assess, consider, and diagnose in about ten minutes. Quite a skill in its self. They are humans, the same as you and me, and as such have the same flaws as everyone else.
Their role is to treat numerous ailments, and to be a gateway to other services. Many have particular interest in certain branches of medicine, but no they don't know everything. Their skill is identifying who should treat different areas of health.
The current restrictions have made their job even harder than it already was.
It is the neuro rehab team that should be leading on your husband's care, and advising the GP of the treatment plan.
I have had two different GP practices, both I can't fault. The latter practice when I signed up to them, I was assigned a named Dr, on the first consultation, mainly to set up my repeat scripts, he did say that my complexity was beyond his knowledge, and he referred me to the senior partner.
The senior partner worked with me, within his limits, and referred me to the neuro team to review my medication. When I was settled then I was assigned a more junior partner.
GPs are better than a Jack of all trades, many have done more training and qualifications, than most of us stay in one job. If I was to feel unwell, I would have no problems seeing a GP.
The GPs skill is knowing about the most appropriate service to treat numerous conditions, but they are human, and as all of us, can only work with the information they can gather.
You are right in what you say but there are gps that won't admit that they know nothing about brain injury and try to tell you that you have mental health problems and prescribe you medication that is of know use to you and can actually be detrimental
Yes, you are right, but you are the expert about you. I don't know your experience. I come from a RN (MH) background, so I don't necessarily hold the same reverence for Drs, if they suggest something I know will not help, I usually tell them, and then tell them exactly what I expect.
Ok in my early recovery, I did kick back against the neuro team, more the fool me, but when I crashed, the GP could effectively stick a plaster on the crack enough for me to engage with the neuro rehab team.
I seem to spend a lot of time explaining to people the difference between BI and MH, and why they need different approaches to treatment.
I used to work for the mental health charity mind. So I have a bit of experience in mental health, obviously I'm not as knowledgeable as you but when I first went to see my gp after my bi he tried to put me on sertraline and nitrazepam and told me they will make me feel better, know if I didn't know about these medications then I would have quite happily taken them because after all he's the doctor and we are supposed to believe them, needless to say I changed my gp. So although some gps are good there are those that send you down the wrong path altogether
I don't think that is a necessarily the wrong initial treatment, if you presented as I did, as a depressed jibbering wreck, then that would be a reasonable treatment, and it would have lifted your mood, but it is the sticking plaster, not a cure.
I was prescribed esotelepam and diazepam, the neuro-psychiatrist wanted the diazepam replaced with clonazepam, initially with desasterass consequences. It took time to balance out the right cocktail. Ok meds are not for everyone, or needed by everyone, but where my brain was damaged, it was the the only answer.
It is managing the presenting symptoms, and referring to the correct service. They go hand in hand. If the GP had not prescribed anything and just made the referral, then I might not have made it to the next stage.
I had just given him my discharge letter from hospital that stated I had 2 skull fractures a subarachnoid haemorrhage and contusions on my brain, and he said there is know pathway for this type of injury, he then proceeded to ask me if I had been drinking because I was unsteady on my feet. So he was the one that assumed I was depressed simply because he had know knowledge of brain injury and never had the decency to refer me on. There are not many doctors in this world that will ever admit that they were wrong
Well there are bad apple's in every profession. I was taught many year's back, if you are going to mess up, make sure it is loud (drum teacher) , and then, it is better to own up, than be found out (professor of nursing). It's certainly the philosophy I taught.
As you have demonstrated, if people think that they can bs, then trust is lost very quickly. Dinosaurs like that have no place, they do more harm than good.
Mind you, one of the best Drs I met professionally was an ancient old boy.
He had left school aged 13, blagged his way into Bart's medical school, and qualified at the age of 21. His first job was in the army in 1914. He served in both wars. He was the forensic clinics GP, and a section 12 Dr.
We used to see him coming across the campus, and often wondered if he'd make it to the door. But he didn't take any prisoners, sharp, isn't the word, he could cut the biggest of patients down to size with word's.
He was only meant to attend the clinic for an hour a week, but he'd stay half the day, imparting his wisdom and experience. He was 95 when he finally retired. That was 74yrs practice, plus 7yrs training. What he didn't know, wasn't worh knowing. One in a million. The only Dr we always addressed by his title and surname.
Apart from the two wars he had been a surgeon, a psychiatrist, and a GP, plus the section 12. They don't build them like that any more.
There was one person that didn't respect him patient or staff. Bless him.
Non existent 😩
Unfortunately, those who have been/ feel they have been 'let down' are far more likely to raise issues than those who don't feel this way and perhaps the latter also have realistic expectations when it comes to seeing a GP. I have had an excellent experience with my surgery, not least because they are honest about what they are resourced to do (and what they are not.) Managing expectations must be a thankless task, not least because of the misinformation that is out there.
Sorry to see so many negatives here. Like Roger M above, I declined rehab because I felt fine and just wanted to get back to work! (And I did despite the advice to take it easy).
I am so lucky that my GP had studied neuro as an option when he was training, so probably was well placed in giving advice.
So, despite being a general practitioner, he seems to be the exception here. Pleased I still have him as my doc.
( I believe he got me on the Working Win trial initiative and a couple of weeks ago had my Pfizer jab ahead of time for my age). Coincidence or one of the rare ‘good guys?’
Just happy to have such support. 👏
I see a Neurologist, who I've had contact with for my MS over the years Mostly I've learned much on-line.
Overall unless your GP or even specialists have direct experience with brain injuries, the level of care then can provide is very limited to non-existent. Unfortunately care givers and even those who sustained the brain injury are left to advocate for themselves without really knowing what is needed. There is one doctor, a neurologist who has over 250,000 patient encounters with tbi patients. He is a Board-Certified Neurologist, with subspecialty training in Neurological Rehabilitation and Neuro-trauma. He wrote a book to help those of us who have not been fortunate enough to have him as our doctor. His name is Dr. Kester J Nedd. The book is "CONCUSSION:TRAUMATIC BRAIN INJURY FROM HEAD TO TAIL". Here is his bio from his website: concussiontbi.com/about-me Also here is more information about the book: concussiontbi.com/
Thanks sca2013, what a great referral to that book. I have probably more questions for my neuro than there are connections between neurons in the brain, nor could I possibly afford the time or cost of putting these directly to my neuro or his colleagues.
One thing he did remark on before I was discharged was my determination to get back to work, something I successfully did, but as he said, “we can so the mechanics, the rest is up to you”.
Since then the old adage of ‘if you want something doing correctly and you have the knowledge, then do it yourself’. I would add that assistance can be accepted or sought, but the basic principle is so true.
So whilst I have no desire to seek out a new career, I have always needed and enjoyed gaining understanding in many, many aspects of life.
As such I have ordered the book you recommended.
Whilst I have read the intro on Kindle, I still prefer (and find it less tiring), reading a proper book.
I will report back my own thoughts in due course.
My experience seems to align with many others here, I am sorry to say it can be decidedly hit and miss.
5 years ago, whilst at work I had a vertebral artery dissection that led to a stroke. Fortunately work was just down the road from the main regional teaching hospital. The critical care I received was excellent.
On discharge I was referred to my local surgery; there is no dedicated GP - just whoever is free. Where I live is in a different NHS Trust and I was amazed to find that the GP had no access to my medical records – he had to rely on my paperwork.
Since then GP support has been patchy. For example I have just learned that after 18 months waiting on referral for a neuropsychological assessment, the surgery had been informed the week after requesting it that it was unavailable from the local Trust. No one bothered to tell me or seek an alternative. On another occasion I was called in for a medicine review and saw a GP seen 18 months previously. I took the opportunity to ask if I could restart running as I had been advised not to. He looked surprised and asked me who on earth had told me that I couldn’t. I had to point out that it was him and he at least had the good grace to look a little sheepish!
Sadly the wife of a friend had a stroke a couple of years after mine down in Derby. The care she has received has been outstanding - her experience could not have been more different than mine and by the sounds of it - yours.
Unfortunately, it really is a postcode lottery as to the service you receive. Even prior to Covid staff were overworked and under resourced. My wife has worked in various rolls in the NHS for the last 30+ years and from her ‘war stories’ I get the impression the service is full of well meaning, competent staff who keep ‘the show on the road’ despite, not because of, management and the latest government diktat.
As much as it pains me to say – it really is the ‘squeaky wheel who gets the grease’. I really saddens/angers/worries me you must keep ‘shouting’ for treatment, etc. Particularly as those who need it the most are those not in a fit state to fight those battles.
Apologies – this has turned into a rant. Please keep ‘plugging away’ and fighting those battles but remember privately your GP may be sharing your feelings of frustration.
All the best to you and your husband.
Hello, this is my 15th year as a ABI survivor and I its a nightmare. I doubt if my records are complete at my GP’s. My care is nothing but appalling and I am currently trying to change GP to see if it will help and then pay privately to see a neurologist 🤦🏽♀️. Sorry, I haven't got better things to say about GP’s and the care of people like myself & is not just the GP’s by the way, the whole system is not very kind to us.
Wow reading all the post here is shocking because I thought I was the only one with ABI lost in the system. I bet there is nothing about brain injury on my records if you called/check with my GP. The care is appallingly shocking. I am currently planning to change my GP (I Dont know if that will help) and pay privately to see a neurologist.
If you go to a private neurologist then make sure that they have experience of your type of brain injury otherwise you may well be wasting your time and money seeing a neurologist
GP's that understand are hit and miss, mostly miss. Specialist units are excellent as they are trained in that particular area. Local hospitals and aftercare are general care, the only places I have found helpful have been the specialist unit and neurologist, but getting in touch and seeing them is near impossible. Self help is hugely important at this time, I am finding it very difficult at the moment but there is no point contacting the GP as all they will say is take a few more tablets. I want explanations as to why I have head pain, why I do stupid things etc etc not to mask it with a pain killer. Hoping things will improve soon, but I have to say I am dreading the lifting of lockdown as everyone is going to arrive at their holiday homes here, taking over, being loud with their big 4 x 4's and dogs that they have no control over. Enough ranting, positive thoughts, sun is shining, sky is blue. Good luck all.
I have had no support from my GP or brain man, I've got to the point that I can't take things the way they are any longer. My doctors can't use the pandemic as an excuse as my surgery was back in 98 I think. What I can gather from people who used to be around before they disappeared on me was I never received any aftercare, they just kicked me out of the hospital and it was down to my now ex-husband to deal with me. He'd got a job to hold down, 3 very young girls, and me to cope with. It was all too much for him. I've been screaming shouting trying to get help but no one is listening.
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