I used to have great faith in the NHS and its ability to treat people. However, over the years seeing many doctors in both the NHS and private settings, seeing the difference in knowledge, how they treat and diagnose patients are poles apart.
My wife had 3 concussions and then 2 car crashed where she acquired two more concussions. She injured her shoulder, knees and lost 50% of her vision, gets rapid episodes of elevated heart rate and stroke like symptoms and the usual PCS symptoms
so far:
An NHS ultrasound on her shoulder which couldn't find a problem, a private ultrasound undertaken by a consultant whom not only found a torn tendon but could show us on the screen where it was not only on the screen but actually feel where the problem was.
Three NHS Ophthalmic doctors whom reviewed my wife's loss of vision whom had no answer, apart from "hopefully it will correct itself over time". The private consultant identified nerve damage caused by the point of impact on the eye socket during a collision and also the concussion.
After the accident, for a few months, she had some spots of blood in her underwear again a few GP, a gynaecologist had no real explanation. Until a private gynaecologist mentioned that it is quite common for women to get that with the seat belt pulling tight in the collision but what he also mentioned is that she may have also broken her hip and that the bleeding is a common symptom coupled with pain walking.
Yesterday, we saw an NHS neurologist. About 10 minutes into the consultation she apologised as she had been reading someone else's medical notes as well as looking at their MRI. My wife's MRI has indicated a white spot on the brain and one on the skull. When we asked her about this. She replied "it isn't anything to worry about, well that is what the radiologist put on his notes". When we asked about the stroke like symptoms, elevated heart rate. Your blood test is fine, have you seen a cardiologist ? Yes, everything is fine with the heart - it is Neurological. No, the heart isn't anything to do with me! We moved on to the loss of vision - nothing to do with her - that is for eye specialists even though the Eye specialists said it was neurological.
The final straw was when she said the PCS symptoms were probably due to Migraine!
The same with one my daughters she had been seeing an NHS gynaecologist for years and recently suggested some very drastic surgery. She paid £200 to see the private consultant my wife had. Apparently when my daughter mentioned what the NHS doctor had suggested he flew into a rage. Instead, she is now having a 30-minute procedure and will be able to walk and go home the same day. She is furious after suffering for years a 20 minute consultation and a 30 minute procedure she will be better and can get on with life rather than the debilitating and life changing NHS suggestion.
I just worry now, how many people in the UK aren't getting the correct diagnosis from sub standard doctors
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sospan
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You may be beginning to realise that the NHS have no answers for PCS, it is not very well researched and not taken seriously, as far as they are concerned it's a mental health issue. The NHS are 30 years behind the private sector that specifically deal with PCS in a very different way. The US is the place to find the best info where they take the visual and vestibular aspect seriously. In 2017 the guidelines for sporting concussions in the UK changed, they found the NHS system ineffective, basically useless, for dealing with PCS and introduced vestibular and vision therapy as well as methods of exercise. In the UK for your vision they send you to an opthalmologist who actually checks your SIGHT not your VISION, your vision is in the brain not in the eye, you will need to see an OPTOMETRIST to check your vision. Try John Glover in Stockport or Janet Green in Wigan or maybe try the vision centre at Cardiff university which is open to the public and do optometry testing, they teach optometry at the university. Also check BABO, for listings of optometrists but contact them first to see if they have neuro expertise.
My neuropsychologist admitted that the NHS basically have no funding for any research or services for PCS, it is just not taken seriously. As part of her job she is not allowed to advise you to see an optometrist etc (they would have to provide the service otherwise) but she privately said that the optometry and vestibular route was the way to go. They know this area is the way to go but cannot say it openly.
The choice is clear, if you, or your wife, want to improve you will need to look outside the NHS. I took the private route and the results were astonishing.
The problem isn't just related to head injruries it seems to be more wide spread across other disciplines. I have always used private medicine since an NHS hospital sent me home with an undiagnosed broken neck. Yet a private doctor realised what was wrong immediately, arranged an MRI and I had the diagnosis all within an hour.
My recovery was all through "private" doctors, some from my legal team and some from the opposition. An NHS Neurologist didn't even see me for 2 1/2 years post injury and because he was a locum from another health board, didn't know what services were available locally.
When I saw him a year later, he asked what treatment / therapy I had since his last t visit. He was as embarassed as I was, when I said nothing had happened in a year.
NHS Emergency trauma medicine is fantastic as is the treatment for many chronic and life-threatening conditions. However, if you are amongst the walking wounded it isn't that great.
It's s bit scary isn't it? I've used both over the years, depending on whether I've had insurance in place or not Though when I've been referred on the NHS I haven't had any problems in the past for relatively minor stuff / investigations. I find if I start asking questions that the tone of the consultation changes, and it's possible to actually have a discussion.
Some of the problem for the NHS is time driven, it's a bit like herding sheep for them - they will try to get through your appointment as quickly as as possible if they can. Plus aren't they limited to treatments ok'd by NICE? My Dad's NHS oncologist was great, he even somehow wangled him a supply of the latest wonder drug, that wasn't available on the NHS ( didn't work!)
How depressing to get to see an NHS neurologist and not get any help! My first private neurologist ran out of ideas when I didn't get better after six months , but having admitted that concussion wasn't his thing, at least he referred me to another neurologist....
Like your Dad's Oncologist, there are very few whom are prepared to go the extra distance to try and make things better for the patient. Even if they aren't successful at least they had a try at making life better.
As one Neurologist, told me there isn't a cure for PCS, if we could cure it with surgery it would be so invasive the risks would outweigh any benefits. However, when you are dealing with someone having stroke like symptoms and sight loss then you would think they would step up a notch!
Yes, you really really would - how miserable 😨. Though the other thing that kicks in is age I think - older women particularly seem to have trouble getting treatment sometimes. 😱. Got a friend who's a retired consultant, she says that in her hospital, she thought people got really good care once they got there, but she worried about the ones that didn't get that far.
Better not show my the "older women particularly seem to have trouble getting treatment " she nearly punched the GP earlier on the year!
About two months after her last car crash, we went to the GP about the concussion and her PCS symptoms. The GP actually said something like "Do you think it could be your hormones and you are going through the change as the symptoms are similar"
Despite being very poorly, you could just feel the rage mounting. How she managed to point out that particular episode occurred a a few years ago while keeping calm I will never know !
Crikey, I don't blame her! I would have had trouble keeping calm too. I think sometimes GPs probably blame everything on women's hormones for our entire lives! Probably why they have no idea what to say post menopause 🤣 So archaic really 😱
Unfortunately, I've experienced the same treatment n lack of it here in the U.S..Healthcare worldwide needs a revamping.
Far from excellent n I cant tell u how many misdiagnoses I've had n been a Guinea pig UNTIL I took charge of my own health n body n fired all my docs n went a different direction.Sometimes ya gotta do what's best for "u" n ur own health.Btw..there r no changes here in USA n there needs to be ,hopefully after 1/20/21
I think syndrome diagnoses cause problems, and I feel uncomfortable with them, and people with long covid, have said that long covid syndrome diagnosis is a problem for them, there is slso chronic pain syndrome.
Stick a pin in a map of the world, see where it lands and ask yourself honestly if you'd rather have health care there than in places where it is easy to deride what is on offer, but where decent health care, with its faults, is at least a possibility. Realistic expectations are useful in assessing matters, as well as focusing on researched, tested and established practice, rather than including quacks, charlatans and opportunists eager to prey on the desperate, who are, understandably, taken in.
Well yes, it's easy to forget that K - and to complain. These private consultants all came up through the NHS in the first place after all. I think they are under too much time pressure in the NHS though. And though NICE decisions are questionable sometimes - when they refuse to take on an expensive drug that only works for a small percentage of people, it is perhaps understandable.
Years ago a friend broke an ankle in Rome - she would have been in her late eighties - couldn't fault her medical care, her daughter, a doctor said that she probably wouldn't have such good treatment in the UK - however the patients' families were expected to provide all personal care and meals - so a huge difference in culture / priorities.
I dontbthink its necessarily the doctors . The environment has a lot to do with it. Nhs,-super busy, antiquated buildings and equipment, targets to meet. Private- quiet,lovely environment unlimited resources, little pressure of time. The doctors who work in private usually work in nhs anyway
You are correct that some NHS doctors work in the private sector. However, it is mainly the better ones that can command the private fees. Most of the consultants I have seen over the years do both.
If the fee paying work stops them leaving to the USA where they can earn nearly three times as much and pay less tax, then I can sleep well.
What I have found with the private practice, is that if you have an appointment at 10:30 you are seen at 10:30 and everything is efficient, Unlike today when our appointment was at 9:00 we entered the room at 9:25 and 10 minutes into the consultation, the doctor realised they were reading the wrong set of medical records, then finished the consultation in 10 minutes and told it is a migraine and nothing to do with the 5 concussions
I completely agree! Since been discharged from hospital ,my therapy came to pretty much a standstill! Due to Corona virus and lockdown I've had barely any face face!
In 1987 after a nasty car accident I was assured (despite struggling to walk) "no damage" fast forward to many years of debilitating agonising back pain, chiropractic, orthopaedic, acupuncture & physio...a private MRI revealed a fracture of one of my thoracic vertebra. In 2006 after increasing upper back pain for a few days with pain breathing I took myself off my local hospital. When I was seen I suggested a pulmonary embolism - the Dr sniggered and said "oh have we been reading up on this, it's highly unlikely to be that drastic" Bloods later that day confirmed a pulmonary embolism & I was immediately started on heparin and had a long stay in hospital.
On 7th May 2011 I got up to go to the toilet at 1.30 am - that's the last I remember until regaining consciousness at 9am & crawling back to bed. The headache was like nothing I've ever experienced. After sleeping (or drifting in & out of consciousness) I rang my friend at 5pm who when she saw me (I had fractured my cheekbone presumably on the toilet cistern when I collapsed) immediately rang for an ambulance. When they arrived I told them that I was pretty sure I was having a brain haemor rage - they actually laughed & said "of course you're not, if you were having a brain haemorrhage you would certainly know about it - it's probably a migraine"
They sat in the ambulance with me being sick and in excruciating pain clutching my head for 35minutes writing up their notes.
At my local hospital they reiterated that it was a simple migraine and did a scan "just to be sure"
A Dr saw me around 9pm & confirmed there was nothing wrong on the scan. All normal. At this point I was curled up in a ball with my head in my hands doing my best not to scream with pain. They gave me 2 paracetamol, a different Dr came to see me, told me to stop being a baby and said that he had looked at the scan himself and it was likely a migraine. It was now midnight. At that point I had gone from thinking I am going to die...to please just let me die. At around 3am people were running around, there had been a change in shift and my scan had apparently looked at by Dr no.3. Who saw something unusual but was unable to interpret it. It was sent to a specialist neurology unit in a different hospital who confirmed a 10mm ruptured aneurysm & massive brain haemorrhage. I was blue lighted accompanied by a Dr & nurse to specialist neurological hospital and had brain surgery at 6am. After a long stay & learning to walk/talk again I now live with the after effects of brain injury which for anyone who's been through it will understand. This specialist neurology hospital, my brain surgeon and interventional neuro radiologist saved my life - my local hospital almost ended it.
I'm sorry that you have had the experiences you have had. The sad thing is that working in the NHS, many Drs are under time pressures. They are no less qualified or less knowledgeable, than those in private practice.
I have worked with some of the best Drs in the world in the NHS and been treated by some brilliant NHS Drs.
Many of the Drs you meet in private practice, are also employed within the NHS, that should be that they are NHS Drs, that also work in private practice.
I had a stint in a private hospital when I trained, and was surprised to meet many Drs that I also met in the NHS. I also saw some shocking care in private practice, patients needing to be blue lighted to NHS hospital to correct the procedures they had in private care.
I was headhunted by a private care practice before I had my stroke, well the stroke saved me having to make a difficult choice. They wanted me to join their directors. But it was made clear to me, that for a very significant package of pay, I would have to give up my principles of only delivering best practice and bend to their ways. That would have left me legally vulnerable.
Rarely you will find a Dr who solely work in private practice.
I know that you may find this difficult to believe, but this is a fact.
You are of course right, thank you for the perspective. There's also a bias ( the same with private schooling ) which works both ways - we don't value what we don't pay for and/or we assume that if we pay for something it is automatically better. You do get to directly see the consultant privately - but sometimes those keen young junior doctors might spot something first?
As Headshrink pointed out, private medicine almost starts the moment you step in the door - the plushy atmosphere is designed to make you feel they know best. And time pressure is a big part of the equation - longer initial consultations can get more information, and also make the patient feel 'heard - and we know that the important information is the point raised right at the end - that comment as you turn to walk out the surgery door...
I've had great long waiting times for a lot of private appointments too. Perhaps the nice atmosphere and the cup of tea help to soften that experience!
I think I read once that death rates in the private sector are lower because they bluelight critical patients to the NHS and the patient death is then recorded in the NHS trust - or is that apocryphal?
We forget that everyone is human too, we expect medical staff to be super human, and to be able to mind read - but we all have off days, and less than perfect days - it's just more scary in a health setting.
Yes it easy for a bad experience to colour our views. Indeed deaths are low in private hospitals for the very reason you point out.
From having a career in the NHS, and the NHS saving my life on more than one occasion, once, by contracting out to a private hospital. This was only because the service I was under didn't have access to inpatient services, and the condition had progressed to an emergency.
The surgeon, the anaesthetist, and most of the theatre staff were employed full-time in the NHS, and the anaesthetist was only available after completing a NHS operation.
There is a place for private care, but this should not be in place of NHS care.
Private hospitals generally are very well equipped for diagnostic services, and generally as far as the public see are nicely decorated, well staffed, but go behind the scenes, theatres are primative compared to NHS theatres.
Private hospitals do not have ICU, so cannot carry out many procedures that required ICU. And yes, they do ship their mistakes out to the NHS.
I have seen NHS and private, and if I had a choice I would always pick NHS over private.
The other thing I suppose is that the sheer numbers of people seen by the NHS , given the population of the country - is that a very small percentage of people could have problems - for whatever reason, and numerically that could be quite large - which in turn would skew our perception of the probability of problems? The silent majority that are ok wouldn't be noticed.
I suspect that many people on various Healthunlocked fora have experienced what can only be described as well dodgy medical care from the NHS, both in terms of diagnostics and treatment options. Just take a look at the tinnitus forum for some sterling examples of disappointment.
My experience is that its inadequacy is more to do with NHS organizational structures, clinical protocols, approach, leadership skills and financial expediency than sub-standard training and/or ability. I think the ability is well tested in candidates before training commences, and the NHS training provided is probably still among the best in the world.
Systemic under-funding and re-structuring of the NHS over decades has led to ineffective and short consultation times, a driver to offer a quick diagnosis that's cheap to treat and a loss of highly-skilled, expert and talented staff to hospitals abroad where disenchantment is lessened and earnings can treble.
Poor leadership in GP practices generates bad habits and thereby disengagement with their patients. Some are excellent; too many are appalling. Poor protocols and funding shortage in hospital lead to complete avoidance of a multi-disciplinary approach, which is essential if an accurate diagnosis of an array of 'peculiar' symptoms is to be achieved.
Too many people get fobbed off, by either GPs or specialists, with surface examination, an offer of painkillers and/or anti-depressants and a referral that doesn't investigate thoroughly enough. As you describe beautifully, the neurologists predilection for diagnosing migraine for anything they can't obviously spot is a classic! Been there, had that experience.
What's the solution? In my opinion, a complete and radical reform of the NHS system led from coal face practitioners and surgical staff, rather than top-down management/administrators. The frontline staff need to 'own' the changes that are implemented to make them effective. The NHS is top-heavy with management groups which is, in my opinion, the root cause of massive wasted resource and disenchanted frontline staff, from the GP practice to the top surgical consultants.
Large scale and initially expensive reform is long overdue and probably will not happen in my lifetime. The money can be found by the Government, as we have witnessed with the enormous costs of fending off Covid-19. The money was there all the time, it's the political will to make a major change that's strangely lacking.
I do hope NHS reform happens at some future point though, before the NHS collapses under its own, top-heavy, weight.
That is exactly what was said back at the start of this century.
One of the problems identified was that the NHS is obsessed and constrained by a model that hasn't changed since its inception. We have too many hospitals which are "jack of all trades" but few specialist centres.
By specialist centres when you think of spinal injuries it is Stoke Mandeville, Eyes - Moorfields in London, Children - Great Ormond Street. What is needed is to change the model from having health boards to having specialisms headed up by a Specialist and his management team. They will then create, centres of excellence for their specialism across the country. Then you can have nurses and support staff specifically trained to care for the patients with eye problems. The top consultant and his board are then responsible for the quality, waiting lists and costs for their area. Some speciality services (e.g. psychology) you may need more local to be accessible
The first argument, that is mentioned is travel. Then you mention that if someone needs heart surgery, would they prefer it in a specialist centre or the local hospital. They always say the specialist centre.
So many cost savings, through specialisms and reducing duplication
Health Board's were replaced in the 70s by Health Authorities, which were replaced by Trust's in the late 80s. The NHS has changed the manner of delivery numerous times since it's inception, much of it driven by Tory underfunding, and their incessant dissection of services. Despite this, there is no Health Service that is as intuitive as the NHS. If you are going to have an acute illness, the UK is the only country to supply care that is free at the point of need. Love it or hate it, many of us wouldn't be alive today save for the NHS.
It is, of course, very easy to criticise without having the responsibity of solving the issues that an organisation of the size of the NHS is bound to have. I wouldn't trust ANY politician with the job of fixing things, butwe are extremely fortunate to have an NHS to criticise. I wouldn't be alive without it Those who bemoan the time spent on admin by staff then grumble at the number of managers... No comment If you believe flashing cash gives you the right to better care than someone who cannot, that is for your conscience to wrestle with, not mine.
Having worked in both the public and private industries including the UK Government and transformed the way the work to make them more efficient, cheaper to run and provide better service.
Some of the plans and proposals, I put forward for the NHS in 2005 have only been implemented in the last 18 months. As you can imagine, there are other plans to significantly transform the NHS, but they will need a very enlightened head of the NHS to make them happen. Hopefully, in the post covid world these plans will be revisted.
And sospan, if government let the NHS manage its self, instead of strangling it, maybe you wouldn't have so much to moan about. What price do you put on life?
This is awful, I am sorry to read this, but not surprised. The treatment should be the same whether private or NHS, they have all had the same training haven't they? The divide is getting bigger, those who can afford private treatment and the majority of us who have to rely on long waiting times and then not being treated properly. Today I am shattered, I drove a long way to a hospital appointment (because my new letter said it was in the hospital, my previous telephone one had been cancelled) only to be rung whilst sitting in the car park by the NHS consultant for my TELEPHONE appointment !!!!!! I have to say this consultant is very good it's the secretary that messed up the appointment, but it still doesn't help my fatigue. So today can be written off as I will be too tired for anything. Also my optician after lengthy tests sent me on an emergency appointment to hospital for a detached retina, for the NHS doc (3 hour wait they'd forgotten I was there, 2 minutes with doctor) to say "how old are you? oh your the same age as my wife, it's an age related thing" and sent me home, the optician was disgusted. So as yourself I have lost faith in the NHS. We have no choice but to struggle on.
doh! there must have been so many mixed emotions about the telephone/ not telephone consultation.
Shocking, when any doctor let alone an eye doctor says things like that. Many people in there 80's+ have excellent vision and when you are much younger and they put labels on people relating to age and expect people to conform to those labels
That's awful - a detached retina is always an emergency!
Have you had treatment yet? The retina usually needs to be lasered - it's quite quick I understand.
Ok it was years ago in London, but I thought the optician that saw my Mum had this (she thought it was another migraine) referred her directly to hospital and she was seen and operated on the same day on the NHS ( in her case luckily it was Moorfields)
Sorry for late reply. Nothing was done about it , now it is just eye ache most of the day. The consultant says it is nerve pain and will tell GP to issue tabs for it, I live in hope!!
Do hope so. Ignoring a detaching retina is a risk for us generally I suppose, Mum thought hers was a migraine with vision disturbance, so was ignoring it/ waiting for it to stop - but apparently if her whole retina had detached she would have gone blind. It was just luck that she had an eye test appointment and we lived in London so the optician sent her straight to Moorfields as an emergency. She had ignored it for so long thinking it was a migraine, that it was so far gone she had to have it stitched as well as lasered. But the op saved the sight in that eye, albeit with a little distortion. Hurrah for the NHS....
Just spoke to doc who knows nothing about tabs so I'm off to chase up them now. Yet another thing that will probably take me ages, keeps me occupied !!
Oh yes, takes ages to sort these things out.. my GP didn't have my consultant letter scanned on his system for a couple of months! I now check online to see if a letter is scanned on before I go in now! 😂 Good luck x
I hope your well and sorry you had to go through so much.
I have had the similar situation my partner in February went to the doctors he felt feverish and was shivering he sent him home with paracetamol.
I was so glad on the Tuesday I took the matter in my hands and took him to AE
They took blood tests couldn’t understand what was wrong with him while in AE he began to have seizures when they put a drip on him and then was in icu they said he 3 different infection.
Finally they said it was phennacocal meningitis which gave him strokes and he had to fought life.
He has severe brain damage they gave me all kinds of conditions he will be.
I refused to listen and slowly he is getting better not a lot and now severely disabled.
They said they don’t know what will happan in the future he’s young he will be home soon.
He’s in a wheelchair and hasn’t eaten for 11 months. I feel still they are not aware what to do with him hopefully when he comes home I can support him more.
I have been through hell and back with the nhs I never have for a straight answer or support.
Just hope he recovers more at home.
My trust in doctors have gone and question if he was sent to hospital in that Monday could of this been avoided.
I also wanted to ask my partner is peg fed even though he is chewing mouth reflexes and he opens his mouth and swallows they won’t give him intense speech and therapy.
I couldn’t be involved because of Covid so he spits the yogurts out or pushes away anything they give him.
There's another factor here of course, though I do agree with Pairofboots. .
My worry is that the NHS is great if you are able to advocate for yourself, but this is so difficult to do with a brain injury, or obviously if you are older as well. Is there any sort of system that is able to provide patient advocacy around,?
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New symptoms after 3 weeks?
Inability to look at screens. Can’t even glance at them. 
Can anyone please give me any advice on what to do
What do all or some of the abbreviations used mean! Can Headway explain please.
What words do you use when talking about brain injury with children?
