Recently I have seen some very negative posts/responses to people with regards the NHS and it's lack of performance, commitment, etc., to TBI sufferers.
It is so bad that like a used car forum where people only post when they have a problem, never to say they have a great car, I'd like to somewhat set the record straight in support of the NHS.
My partner (who frequents this forum) had a severe TBI with the following injuries:
Left extradural bleed
Subarachnoid bleed
Subdural bleed
Acute parenchymal contusion
Temporal bone fracture
Left zygomatic arch non displaced fracture
She had an emergency craniotomy within a couple of hours of her injury, and I was on the phone with the surgeon as he prepped her and I was told when they opened her skull she may bleed out on the table, so prepare myself for that event. He said she could bleed so fast they wouldn't be able to put any in her fast enough.
My partner would have died, make no mistake about it, if it had not been for the amazing doctors, nurses, surgeons, and ambulance staff in the NHS. From the care she received at the scene of the accident, to the team in resus at Sheffield Northern General who diagnosed her injuries and got her as stable as they could, the safe transport to Royal Hallamshire across town for surgery, and to all the aftercare during her coma state and recovery thereafter. Her GP, neuro rehabilitation, surgeons, and support staff all came together afterwards to provide her with amazing support and recovery care with us seeking private care for only a couple of issues like BPPV to bypass NHS waiting times. Prime example of our NHS coming together as one cohesive unit and saving a life.
We have one of the best healthcare providers in the world with the NHS, and some of the best trained nurses, doctors, surgeons, paramedics, even down to orderlies who are so often overlooked when we talk about hospital care.
Please make sure to think when you post that your opinion and or experience with the NHS is not everybody's opinion or experience. Your negative post about the NHS, sometimes very hateful posts, could cause others more stress as they try to navigate a complicated care system with a wide range of services and professionals who all have to come together. Negativity breeds negativity, and constantly beating on about how bad the NHS was for you does not help another who is struggling to get the right help.
I like you have only good to say I was intubated at A&E Exeter and taken 50 miles plus to ICU Derriford in Plymouth because they cared enough to try to save and I am here today because of them
Hi Caelan, my experience with the NHS was appalling, the paramedics refused to take me to hospital after my car crash because I had crawled out of the car after 20 mins being unconscious. They said that if I could get out under my own steam and they could see no blood or broken bones then I was ok. They told the police I was ok, the police then told me to get my car out of the road because it was causing a hazard. I managed to drive it a few hundred meters down the road before it caught on fire. I then had to get the AA to tow it away, the AA guy said this was happening all the time now, people were just being abandoned on the roadside after a crash.
I went to my GP the next day and was told to go to A&E. At A&E the emergency team said the ambulance crew should have taken me to hospital. The A&E team did a CT scan and said it was a concussion. A week later my left arm was dead, I had slurred speech, my vision was fragmented, I could not speak properly, my working memory was gone, I was having visions, my head had seized up with hypertension and my face was contorted.
I was sent to A&E again where they did a CT scan which was clear and they sent me home. Over the next few months I got worse with fatigue and hypersomnia. My doctor was suggesting that this was caused by depression. I went to the eye clinic and they said my visual issues were psychological. I had 20 sessions of physio which did nothing for the hypertension or the left arm which by now had wasted away to become skeletal.
After a year a friend took me to see another GP in a different town. He arranged for me to go to a neurological centre of excellence in another health authority. This was 18 months after the accident and the neurologist could see I had a brain injury straight away. He sent me back to my health authority and wrote them a stern letter and asked why they had missed this. after that I was sent to a neuropsychologist and after three months of testing wrote a long list of brain dysfunctions. However my health authority had no money for rehab so I was abandoned to my own fate and was told that if I felt depressed go and get some antidepressants.
Luckily I had started to go to private healthcare to get some help with my vision and for the rest I researched my symptoms and rehabilitated myself with the help of YouTube videos.
Now the big difference with my story and yours is that your wife had an acute brain injury that was obvious and luckily for you they gave you the VIP treatment. Acute brain injuries account for less than 3% of injuries while the other 97% quite often have similar stories to mine. The problem is that the NHS has been underfunded for 2 decades and there are very few neurologists, doctors and nurses that have any idea about non acute brain injuries.
For a start the scans they do in hospitals can't see them, but other scans can. The NHS has not got these types of scanning machines. So there are tens if not hundreds of thousands of people in the UK who cannot get properly diagnosed and as for rehab there is none other than counseling and antidepressants. People are so disillusioned, are going mad, attempt suicide, can't work anymore, have family breakups and many become homeless.
The problem is so bad that the government announced in parliament that a new strategy for dealing with brain injuries was required because the current one was failing. This announcement was probably pushed through because it is costing the tax payer £15 billion each year.
Only last summer was there funding available for new research into how to diagnose and treat brain injuries. It will take years to implement it once it's done.
So, many of the complaints you read on this site are about the lack of diagnostic and rehabilitation services that are desperately needed. This sit provides a platform to share their experiences about the appalling state of the NHS, even the consultants, doctors, nurses and porters say this is one of the reasons they went on multiple strikes.
While you write to complain about people airing their frustrations about the poor quality or lack of care provided by the NHS it's actually true, otherwise the government would not have acted to the pressure to make major changes and Headway were on the list of organizations who supported it.
I'm glad you got the care you needed but maybe you should spare a thought for the thousands who get fobbed off and can't get any help at all. The rose-tinted view of the NHS has gone for 76% of the Uk population in a recent official survey after all the scandals, deaths and health authority cover ups that have come to light over the last 12 months.
I'm glad that the NHS did a marvellous job to save your partner and provided marvellous rehabilitation. It is good to hear. You are right to say that we should hear the success stories more often, and unfortunately I think that the powers that be would prefer us all to think the NHS is failing, when in fact some of the work it does is indeed exemplary.
However I feel that funding for the NHS has been systematically run down by government, to the point where only serious life threatening situations are dealt with effectively. Rehab issues seem a long way down the list, and experience on this site of GP care after MTBI seems very mixed.
GP services seem very stretched locally to me and non urgent care for my mother sometimes feels like something out of Kafka, with little or no continuity of care, and treatment and prescribing taking ages to work through - with countless reminders and chasing from me. When she has had a fall, it can take hours to get help. The sum total of this has affected her mobility and quality of life.
I don't think the much vaunted American style insurance model will provide a good working solution - my experience of dealing with insurance companies for my own MTBI care was salutary, basically they will have cut-off points for care, and will ration it ruthlessly.
Friends in nursing quit to do agency work because it pays better and is more flexible - how can it be right to staff our hospitals with agency staff rather than reviewing working practice and remuneration?
However when I have had cancer scares, the NHS springs into action and is indeed marvellous. They also manage with far less beds and staff than our peer group of countries do. We just have to spend the same amount of money on it per capita and as a percentage of GDP that other wealthy Western nations do on theirs.
I understand your perspective and I totally agree about funding, et-al. I do think there are more success stories than you will ever see on here because people just don't post about positive news anywhere. It's why I likened to a used car forum. Nobody joins a forum to say they have a great car, only to look for solutions to problems so you never see the positive experiences.
I lived in the US for 15 years so am very experienced with the healthcare system over there. I was lucky that due to my work I always had great healthcare. It has it's positives and negatives just as the NHS has, but when you have insurance, the most important thing for me is that you get appointments very quickly even if just for rapid diagnosis. It is on the other hand a medical production line and they want to empty beds quickly to fill them again quickly and keep the cash rolling in. Many British nurses and doctors move to the States and Australia for the better pay (I knew one nurse making $85,000/yr), which again comes down to funding. Privatisation is not the way to go, but maybe they could monetise the NHS in some ways and become semi-private in nature, e.g. means tested small co-pays for GP and hospital visits (free for unemployed and OAP, £5 up to an earnings ceiling, £10 for the next level, and so on).
I don't have the answers, and I don't fall into a group who can't see anything wrong with the NHS because I see many failings, but I am supportive of one of the best healthcare systems in the world.
Hi Caelan, you've obviously had a terrible trauma with what happened to your wife and yourself, and initially saw the very best of the NHS in emergency mode, who saved her life. Many seriously injured people on here may have had similar experiences. But the problem we all have here is actually living with a brain injury, and the knowledge and support for that at local level in the health service seems very limited indeed across the board. Please also realise that many of us here are now unable to work post even mild brain injury so budgets are tight (and that frequently our families still think we're fine!) You might be interested to find and read a book co-written by a stroke sufferer and a neuropsychologist - the second section is written by the neuropsychologist Caroline Vaughan who gives practical steps that family and friends can take to help people who have suffered a BI. Don't be put off by the 'mindfulness' on the title - it has a good practical slant alongside a personal description of how weird it feels to live with a BI. It's written by Jody Mardula and Caroline Vaughan and is called 'Mindfulness and Stroke' I think all family members should read it actually. I got my copy from my local library service. Do remember you can always talk to the Headway helpline in office hours also.
A small criticism from me, because though I understand that you and your wife have had a very traumatic time ( like many people on here) which I am sorry for, but please be aware that your initial post was actually a little more combative and critical than posts usually are, on this very supportive platform for both for carers and people with BI - but I realise that this might be perhaps you aren't particularly used to this particular type of online forum.
I agree that we are very lucky to have a free at point of care system here and a lot of it functions far better than we might suppose from the mainstream media, though we are perhaps less lucky that care is slowly being squeezed and rationed, I was told frankly the other day by my practice that unless something is life threatening that there is very little likelihood of anything being done (I've got a benign tumour which is growing) I'm in the south of the country in a reasonably affluent area. Our doctors and nurses have also been worried enough to strike. Plus do remember that what is getting reported on here is actual lived experiences of course. And even on the measurable 'serious stuff' our cancer survival rates are now tending to fall behind our peer group of wealthy Western nations - which is a concern.
Hopefully for the brain injured community recent legislation and guidelines might begin to improve things further down the road, but we aren't there yet unfortunately.
I don't come here to argue. I come here to try and help others who are supporting family, friends, etc., who have a brain injury because there is a massive lack of support for us. All the care is directed towards the injured with little to nothing in the way of support for those of use left living through the immediate period of injury and with the long term issues, so I want to help others by passing on positive experiences from that perspective. I also come here to try and get help myself because I suffer from my partner's injury too. Statistics aren't helpful. What the government is or is not spending isn't helpful. What is helpful is to feel you are not alone and to benefit from the experiences others have had in getting help (not the experiences of NOT getting help) and navigating a complex healthcare system where multiple departments and locations are involved.
I take umbridge at a comment stating my partner got "VIP" treatment, and I won't go on more than that because while I feel sympathy for your particular experience, your reply is quite frankly angry in nature.
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The term VIP treatment is a common turn of phrase where I live for anything that works out for people, I did not mean to be offensive. I find it odd that now you are saying you can't find support when initially you said you got everything. There are plenty of angry posts on this site, this is a place to vent frustration and many of us recognize each others predicament and try to figure out what to do, identify where the problems are and suggest solutions from experience. Another way is to find out the reality of what's happening from facts, figures and statistics and try to understand what the government is doing because with these you can argue your position.
You find that you can't get help, does your wife have disabilities? if so you can look at what support you can find on government web sites and at your local council site. Don't take their word for it, read them yourself. you may find that you do qualify for help that you are not being provided for and if that is the case you can fight for it. If you sit back and wait you won't get anywhere but if you take the fight to them you may get something. Another way is to get your communities solicitor to do it for you. If there is a disability your communities solicitor will fight for FREE because the government allocates funds for them. To be able to do that though you are going to have to criticize the NHS for lack of care and poor service.
I know there are understandably a lot of emotions here, and I don't want for one minute to diminish the experience of caring for someone going through this, so you do have my sympathy, but respectfully, if we have a brain injury, we have a right to be angry.
Yes those who have a brain injury are right to be angry but you have to remember that those who are Carers also have a right to be angry. This Headway isn't all about those who have suffered brain injuries. It is also there to give advice and help Carers who are suffering, as not all carers can just accept what had happened to their partner, friend, family member, whoever they are close too, it difficult for them. They actually need some help at times too. Even if you think it might not be as much as you or any other brain injury survivor needs help, Carers do.
Absolutely. I think the emphasis of my comment was misconstrued - my point was that it is ok to feel angry, not that that's the preserve of one group. Hope that makes things clearer; I'm definitely not trying to diminish the challenge of caring for someone at all
the NHS does save lives like it did with me . My accident was fractured skull , broken neck several bleeds on the brain , two damaged shoulders ( both needing operations , one where I have metal screws and plates which was done 9 months after my accident because they wouldn’t give me a general anesthetic as the Risk was do high because of the brain injury and the other I had bone removed and ligaments which I paid for privately as I was agiain put on a waiting list of 18moyhs plus and it was already 2 years pass my accident . My ruptured hamstring was eventually scanned 22 months after accident as I was still in pain and pay privately for massage which I am still have and she kept saying she could feel the scare damage in the hamstring …
Please be happy that your friend got what she so rightly deserves and yea share this on here as others have done , BUT please don’t put up post like you have done stating we are being angry or talking about the Lack of support in the NHS as this is 💯 true for so many people myself including … without this honesty from this forum I would have had no support for the NSH and the people in here has been the only network that has supported , encouraged, given advice , offender alternative ideas … the list goes on and this is the. Only place that has helped me deal with actual waking up in someone else’s body and a brain that is completely new to me … I truly wouldn’t wish this on anyone and I a very strong minded and motivated person who has fought this for 3 years now and am still fighting .. I am know paying PRIVy once agin to see a neurologist £280 for the first appointment as agin I’m on another waiting list (The NHS ) I have worked all my life but unable to work as my brain can’t concentrate, short term memory etc So until I had my last op that’s year which I paid for I didn’t know that I can’t concentrate on a subject , use the right words , attempt to use my hands , write , read … the list goes on .. hence I am PAYING for help .. . This is the very short version of my life in the past 3 and half years nearly .. and this forum has kept me going … please share your good stories as we all know the NHS will save your life … but it stopped for a lot of people on the forum for me the minute I left hospital and actually while I was in hospital things most certainly weren’t right .. And lots of people on here were not seen at the beginning or there brain injuries …
I actually was gobsmacked at how you wrote about this Forum , I’m guessing it’s from lack of knowledge in what it actually is like to be living with a TBI so please be happy that you have know idea but please think about how you talk to those of us who do understand .. I very much hope your friend continues with the support she will possibly need from the NHS as we all deserve this support … Sue x
Interesting to hear your experiences. I totally understand some of your vein - I'm not going to lie that reading all the stuff here has stressed me out a lot and probably added to my feeling of hopelessness, but on the other hand, it's been necessary as how else am I going to find out what care to ask for? I've never heard back from my local Headway and I don't have any other recourse. I'm also very grateful for the community here.
Interesting that these are your experiences (and I'm very glad your partner had this care) as I am also in Sheffield. I called 111 two days after my accident and was sent to minor injuries at the Hallamshire, who after two hours told me I never should have been sent there and sent me to the Northern General. After six hours waiting on my own - and I struggled even standing to queue to get in - they eventually saw me, but by that point I had almost left because I was really worried about having no phone battery or car at 1am on the other side of town, and I had no idea this would turn into what it has. They did the tests for moving their fingers about and what not but I don't think they did much else. In fairness, I don't think there was anything that would have told them I'd turn into a persistent case - all tests have been clear.
Four months later I haven't yet seen any rehab other than one private physio I found myself, and I wouldn't even be on a waiting list for any if I hadn't found about them myself via Headway (no mean task when screens and scrolling through information have often been too much, and I don't really have anyone doing it for me).
My GP had little idea about brain injury and the neurologist she contacted didn't suggest referring me to those places either. The GP has been absolutely excellent in listening to me and trying various things and she was the one who diagnosed me with Long COVID after three years of other issues, for which I had seen various consultants at the Hallamshire who did no such thing. Their care (pre TBI) has ranged from lovely and thoughtful to surprising me with an invasive procedure and leaving me in agony. So I don't want to fault her - her talking to me like an intelligent human has made a difference - but I do question the system around her.
Of course, I can't be judge and jury in these things - I am not an expert, I'm a patient trying to muddle through this.
My strong suspicion is that the NHS, like anywhere, is made up of humans who are kind and fed up and all kinds of moods, and that our experiences have diverged because it, fairly, concentrates on the worst cases. The ones who aren't a medical emergency (like me) are probably the ones who can get a bit left behind.
Of course those extreme cases should be the priority, but I don't want it to get to the point where I've lost my job and independence forever. Just being patient wouldn't have got me onto waiting lists.
Of course it may well be that neurorehab in Sheffield is excellent - I will see when I finally get there!
I’m also from Sheffield and I think I was referred to (SCBIRT) Sheffield community brain injury rehabilitation team from my doctor. Maybe ask for a referral and they possibly could help you. For me they did give me understanding of my injury and how it would impact how I am. That was firstly years ago after the accident but I have been back recently and seen exact details of the injury plus problems that it may have caused. I did have to ask and wait but got an appointment and it helped.
Thanks I'm on the waiting list now so fingers crossed.
We have been in contact with Headway in Rotherham as we live in Wickersley and they have been great. Maybe try them if Sheffield is unresponsive. We had someone come and visit us at home first, gave us a lot of information and details of support that is available.
Also, if you need help locally we are very much willing to help where we can, so please PM me if there is anything we can do for you.
it is true that it is very scary with a TBI and although this is my only place to get support it is also allowed me to realise I’m very much not alone and all of this information needs to be passed on to the people who can help .. I’ve had a interview / meeting with a couple of guys who are trying to write a programme for concussion rehab which they are hoping the NHS will use as there is nothing that that can offer at the moment ..I’m disappointed in the post that started this chat as it was very dismissive of what our life is actually like .. it’s great to hear when the nhs do the right things but never accuse the other people who haven’t had this treatment to stop sharing the negative or that they are angry 😠 .. you have had little to no help which is common and and although my scans did show up broken neck , fractured skull and several bleeds on the brain I also have has little to no rehab … let’s keep helping us all deal with injuries that non off us ever wanted but at least on here we know we are not alone and have a vast amount of knowledge to share sue x
My care has been great and at moment we have free NHS (I know we pay in our taxes) who took the brunt of Covid period and still. I thank them everytime I see someone. Hate negative commenting. Give me positive comments any day & yes there aren't enough of them.
Complaints of neglect, resulting from ever increasing waiting lists, are from folk who badly need treatment for ongoing brain injury issues, making quality of life intolerable. Many have additional, unrelated health issues ; all-told, this leads to desperation, but still they wait.
We know the NHS, a wonderful organisation with dedicated, caring staff, has been starved of adequate funding for years and (as most doctors will attest) is now 'On it's knees'. It's government neglect not the NHS's.
We often use he words 'Rant away' to friends here who, at the end of their tether, come here to sound off as there's no other therapy available to them. It helps ; it works, and it would be a travesty if they felt unable to confide in the only place they feel safe and without judgement..
Hi Caelan, I'm sorry to hear of your partners accident, I'm glad she has had such good treatment and is on the road to recovery.
In the past I have also received excellent NHS treatment for stitches, broken bones Asthma and various other injuries/conditions.
Unfortunately my head injury was different, I don't know if it was because it was 2021 in covid times or what. When I was initially taken to A+E I was told to go elsewhere. I had just been dropped off with no money so I couldn't. I couldn't get an appointment anywhere, even with my GP for months, which was a very scary time. All of my appointments have been over the phone, which is unhelpful. My last appointment with a neurologist they told me they've never had a patient that couldn't fully describe their symptoms in detail over the phone, so I got a letter saying I'm discharged for being uncooperative (which was nice!). I think the last thing I was told was to sort myself psychological therapy, but I never get anything in writing so I can't remember.
I'm not hating the NHS at all. It's just my personal experience with this.
Very said to hear your story .. i very much hope you will be seen/ heard very soon please keep ringing your GP to say what is happening as without your information they have nothing on your meds records and all of this is very important .. GPs like my own have no idea about head injuries which has been openly said so they need to keep chasing neurological .. I hope you get seen soon as I am know going private something I didn’t want to do but I’m desperate … will keep you all updated when I have spoken to him .. keep chasing as you also deserve to be seen ..Sue x
Thank you for your kind words. I think I'm at the end of where I can go with NHS to be honest. Again not trying to be negative, just how it is. Concentrating on self help and trying to be positive. I'm nearly 3 years in so time to take back control.
Best of luck with going private, I tried that early on but it was all too confusing so I left it.
I will keep you informed with the private neurologist appointment and like you I’m 3 and a half years past my accident and very much needing clarity on what happened to me and help to deal with the new me .. fingers crossed I will get information and possibly a new ct scam or mri to see what damage has happened to my Brian Sue 😊
Sometimes we need to have a rant as no one but the people on here understands how difficult life has become since having a brain injury. This sometimes is our only way of getting relief from the stress of not being understood. People on here offer solutions to problems others have, and this needs to be recognised by others readers. The start of my journey was poorly dealt with and it took 4 months of constantly trying to get any sort of help, the gp advice was take paracetamol regularly. I finally got seen by a Neurological Rehab team and was taken straight into the unit for a month ! This was the start of my acceptance of my injury, they explained what had happened, did lots of tests and physio. It was such a relief to have found some understanding and explanations for how my body was performing now! I wasn't imagining the problems I now had, my speech, memory, balance, writing, all problems were all real, I officially was not going bananas 🤭. All I am trying to say is that not everyone on here was lucky enough to get help straight away, and it is only by being on here that I found help, solutions and the humour that only another sufferor can understand ! Headway was my biggest help, to find others the same that I could be normal around, embracing our injuries and laughing together about stupid things we have done or people have said to us. The partners, family and friends of a brain injury sufferer see, but cannot feel how the person is inside. It's like your world has changed overnight and there's only a huge struggle ahead. We can't thank the people enough who help us, you are not taken for granted, but people need to understand why we rant on here, it helps us!!! Read through some and you will find the odd bit of humour in amongst the complaints. Do you put chilli on your porridge instead of nutmeg, or yogurt in your tea instead of on the fruit? I do and it's something we get used to and hopefully makes others laugh when they read it. Just trying to put our side forward, some of us have not been able to get help and are still struggling with getting it.
Maybe I should have been clearer in my first post. It's the repetative hounding of the NHS by the same people over and over that is not needed. Sure people will come here and have a rant at the NHS as their frustration builds and they find nowhere else to vent. That is totally understandable and definitely needed as there are no outlets anywhere for this. Then the same few people will respond time and again with their experience and how bad it was instead of just saying hey, I've been where you are, try this, try that, call this person, try this organisation, etc.
I think my point has been proven here about the negativity with the usual responses, also very much directed at myself, putting words in my mouth, telling me I don't have a clue, and basically telling me I don't have a BI so I know nothing. Sorry to tell you but I do have a clue as I have been living this from day one with my partner and am still living with the daily struggles she has with the changes to her personality, health, etc. We still are receiving NHS help by way of neuro-psychology and rehab, counselling, and GP help which as an ongoing thing is still fantastic.
I am also living with a BI, just not in the sense my partner is. My feelings also have worth.
This forum is for everyone affected by BI's, not just the handful of people who have pretty much berated me for my post which is solely, very nicely asking people to think about others before they post their negative hateful comments about the NHS time and again. Every time someone posts a new thread in their search for help it's the same story in response instead of just supporting the person who is struggling to get the care they need and not causing more stress and fear making out the NHS is the enemy.
Seeing comments saying you are gobsmacked, disappointed in this post, it was combative, etc., really dismisses the fact I am entitled to have feelings, an opinion, experiences, a voice in this community, and any worth. It also shows there are some people who have no respect for others because in their opinion people like myself have no right to express anything which goes against what they think and feel.
What is interesting is that to this point 18 people have liked my original post and there have been a few who have actually posted supportive comments because they don't want negativity. We have less than a handful who have fed off each other with each new post (no doubt the ones liking each others posts) as things grew arms and legs. Statistics are talked about constantly. I think the statistics for this post speak loudly.
My partner left this forum previously because of all this negativity. She came back because it's the only place where she can get support from people who really understand what she is going through, but again negative people are driving her away, and it's the same people all the time. It's also somewhere I come for some small level of support as a partner and carer because the healthcare system provides zero for people like me. It has made me feel good in the past when I know I have helped someone, and received a PM or two to tell me so.
Well done to those few right here right now though, as this will be my last post and I will be deleting my account after I post this reply. I don't have the time or mental capacity for spitefulness and negativity in my life when what I/we need is positive support. Were there a block function I would have used that for certain people long ago and got on with enjoying the forum. Maybe this is something they should consider adding.
I wish everyone well in their recovery journeys, and to all carers and family and friends of people with a BI, you too are not alone.
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You should not leave if you find some posts helpful. You do have a choice whether to read or not read posts you don't find helpful. People are sharing their lived experiences and they may not sit in your comfort zone, but they are helpful to other people. That's life.
Hiya, I fear my comment may have been misconstrued as suggesting the feelings of partners/carers weren't allowed - I'm not sure why as that wasn't what I meant at all; it was to explain that it *is* ok to feel angry and negative with a BI - NOT to suggest that only one group have that right. You absolutely have a right to feel all the emotions living with BI, carer or patient. I've only been on this forum a short while but I really don't want to think anyone feels they are not welcome here - that is really the last thing any of us need. We can disagree (and no doubt we will sometimes!) but we absolutely need a welcoming community for all of us here. I'm sorry if I've inadvertently made you feel that's not the case. We do need to be able to sound off too, and having a space where we don't need to put on a cheery mask, as I find myself doing so much with well meaning friends who aren't brain injured, is invaluable.
this forum is for people to share in what is a life changing experience both people with brain injuries and family and friends … I have been on this forum for 3 years and have found support from everyone .. yeah there are negatives and positives which are equally Shared .. I have found this place the best place to be as I don’t feel so alone , scared , exhausted in a world that for me has been ripped apart from my injuries .. I’m unsure if you will read this reply and I am still GOBSMACKED at your posts as these have been the only posts that I have read on here that have hurt and belittled what an awful lot of us are dealing with … my husband is also going though hell with me and our life that changed in a blink of an eye .. I worked with a brain injured guy doing 24 hour shifts and as a complex mental support worked pre my accident and lucky remember all that I learnt from these jobs at it is this information and this forum that has kept my going … I never have thought about leaving this group but from your last post it has crossed my mind but I won’t be leaving and I will be supporting and sending love to everyone on here who wants to be on here … please read my posts of support and dispair As equally I have has them all .. I’m a human who is struggling daily to get on with my new life and still show others that I care … bfrom a very sad Sue 😢
Hi bearing all that in mind my local hospital showed me none of the dedication care and medical diagnostics that you speak about I was misdiagnosed for a stroke how hard is that to work out .I had clearly facial drooping limp arm no speech and drooling memory loss and confusion .so in my experience my paticular godputal has let me down time and time again .while I'm contrast a hospital in the same city a few miles away from my local hospital is brilliant and waiting times shorter diagnosis made the same day ..it's just sad I have never benefited and been allowed to attend that paticular hospital as paramedics have to transport patients to the nearest hospital. I am not ranting far from it .I am merely stating that sometimes the nhs or doctors and nurses get obvious conditions in patients wrong sometimes .although I disagree with the first views of the reader I agree that Britain does have the greatest free care and at times I've experience that. But lately after having a son in psyciatric hospitals for 4 years ,he's better now ,even our e penitence of the mental health now was shocking nurses laughing at seriously sick patients bullying allowing patients to take drugs and drink whilst on quite strong medication so I have nothing to feel proud of the nhs for personaly
Well thank you to those who have just made my partner feel like he hasn't got the space or right to say what he likes without being judged. Yet again on here like it happened to me people decide to make him feel like he has judged people, made the wrong post and basically made to feel worthless that he can say what he wants. It makes me think why the hell am I back on her after people made me feel a failure for thinking everything I had posted was a negative. Shame on you for being disgraceful for judging people with any injury, or no injury, for what they have achieved or still having to find the help they need. My partner is the most caring person who has been with me the past 17 months to help me while working from home instead of going to work and making sure I was going to every appointment but the minute he would like advice or just an ear to hear him on how a carer is, he is made to feel hurt. I honestly have nothing else to say that you have made an excellent carer leave this forum because everyone who has decided to be negative with him have succeeded in making him leave.
Shame on you. I will never post on here again if I think i should ask something, even I feel ashamed for positing something that is bothering me or I'm needing to have support. This place isn't what I thought it would be anymore. I will never forgive you lot who have just judged him and made him feel that bad for posting that he has deleted his account.
Enjoy your absolutely lovely life that you are always right yet everyone is wrong.... bye!! 😠
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Hi, I did not make the connection, but I think something like this happened before when you upset people and you left and then came back because this was the only place you could find understanding. You and your husband should stay because this will be forgotten soon enough and you will still be able to connect with people who understand what has happened to you. You may want to try and be a little more tolerant about what other people say because everyone is working out what is happening in their lives in whatever way they wish to describe it. You just need to accept that as a fact of life. It's all a process that people need to live through to reach their own understanding.
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No you have it wrong, very wrong. You say what you want as no matter what I say to try and show how people had affected him yet again I'm wrong. He won't come back on here and at this minute I'm going to go too. You stay and say what you have to say because i can't as you would get me I to trouble again. Stop playing games.
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Sorry Lion, but wrote it in your first post when you came back. Ask your husband to delete this whole thread because this back and fore is no good for anyone.
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He can't delete it when he has deleted his account thays why it says hidden I stead of his user name.
what I can’t understand is how you feel so angry that we all have our opinions on what is actually happening to us , yet you are getting all the help we so desperately want and need and your both angry because we aren’t getting help and openly talk about it to others who understand this and help us with other options and advice .. I’m unsure how you would be feeling with no rehab ( like myself and others) as this is what is happening all over this country .. I’m not leaving this forum as it’s without a doubt the most positive place to be for me and would suggest you ring Headways for help and support in what seems to be a difficult place for you and your partner .. sue x
Well this has all gone "tits up" as they say!!! I think what needs to be said is that many of us are struggling with our injuries and all the after affects of a bi. We get frustrated with not being able to get help, and find support from others on here a big help. It doesn't matter if we have a rant, we need to sometimes, to help us get rid of our frustration with the services we cannot access. It helps us, well me, as I cannot communicate or write like I used to, and it helps me to see that I am not alone. Classic bi effects, today I put all the rubbish into the garage ready for putting out at the crack of dawn tomorrow, Husband said, what's all this rubbish doing in the garage? I said it's ready for putting out tomorrow because it is Monday today. He just looked, shook his head and put them all back in the storage bins!!!! I didn't know it was Friday 🙄🤦♀️🙂 Try not to take it to heart what is said on here, everyone has their own opinion and should be allowed to express it, surely that is what this site is here for, if you don't like what is being written don't read it. We all have had good/bad experiences with the services and putting it on here means others can offer advice and help, just what we need at that particular moment. Just seeing a response of "liked" to my comments helps me enormously, it lets me know someone out there is reading my contribution and I am not alone. Is there a site for carers/partners/helpers that you could join, rather than this one? Please don't knock this site or the people, as we all need contact and to feel we are understood. Take care, life is stressful enough just accept we are all different and have different ways of coping with the problems a bi throws at us.
I think others have said about all that I’m thinking but I’m very concerned that you and your husband need a lot more help than you are getting in regards to how he is coping with what has happened to you with your TBI .. I am in the same place as you and we are going to couple coucilling and it is very slowly beginning to work costs a bloody fortune as we have to go private ( not available in the NHS) and I haven’t worked since November 2020 😢 . This forum is people communicating about the good the bad and the ugly of life with a BI and a lot of this comes from lack of help on the NHs , the fact that we have to fight to get PIP as for me the only thing they scored me on is the fact that I wet myself ( yes a negative comment) and I have one else but this forum to share this with …. Maybe this forum isn’t what you need or your husband needs . Maybe there are other forums that are more suitable but please seek help as we all know this is a shit please to be dealing with a Bi .. couples counselling has been very good for me and my husband …Sue x
It is truly amazing what they did for your partner. I also received life saving brain surgery. It makes me feel incredulous to what the NHS does. Due to covid times i was taken in alone by ambulance and i was only conscious when prompted (until I wasn't) and I say to people, being there alone with no family member to watch over me was not needed, the staff did what they needed to do and saved my life.
I often read that NHS emergency care is amazing at the point of life or death situation and people make a distinction between emergency care and other types of care. if it was funded better it would have greater results in other forms of care. There was a report this week about the number of deaths by long waiting times to be seen in A&E. Heartbreaking.
During my hospital stay i was amazed by the size of the NHS 'machine' to make it work - all the staff it employs! The precision to get food delivered 3 times per day blew my mind! I was next to the room they used to send the food out and the chatter of the staff cheered me up because I was isolated due to contracting covid. I don't recall a cleaner ever entering my room though. Looking back it was unsanitary.
I am so pleased that your experience was positive and NHS neuro surgeons undoubtedly saved my daughters life which I am eternally grateful for. Their expertise, competence and commitment were second to none at the Walton centre in Liverpool. As another poster said I think we have seen the NHS in full emergency mode and they are excellent. However as you move further down the scale with non critical issues you do find that a lot of peoples experience is pretty awful. I believe most people complain about this level of treatment and care because they can see how easily it can be fixed and it is very frustrating not to be able to access care because of funding, mismanagement, incompetence and poorly devised systems. There was a massive disparity between the care my daughter received in intensive care and all treatment that followed on from this including a high dependency ward, a rehabilitation unit and eventually out patient care and therapy. As I say a lot of it is general lack of organisation or care. Appointments with the wrong people, wrong medical information recorded, finding out appointments have been cancelled on arrival, information not being shared between departments, hospital trolleys not being available for a patient who cannot sit upright and has to attend appointments by ambulance despite this being arranged beforehand. So many things that are an easy fix that make the whole experience more bearable. Nobody is ever accountable either, staff apologise then don’t fix it and it happens again and again. If you only have one hospital appointment and when you arrive there is a problem you might believe it is a one off and of course these things happen. But when you have many, many appointments you see just how often these problems occur which is all the time and there is no action taken to fix it. Make staff accountable. If you continually send appointment letters out which are subsequently cancelled and the patient is not informed then check which staff are not informing the patient and make sure they do as they have not only wasted the patients time but they have wasted resources because that patient might have required an ambulance to attend the appointment. There seems to be a general lack of care with this side of things, that when you actually deal with someone who is helpful and competent they really stand out.
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