The NHS simply does not care

My nearly 18 yr old grandaughter was hit on the head by a panel of wood 2.5 yrs ago

She is/was so brilliant she had a glittering career in Law ahead of her 

NOT NOW  because the NHS simply does not care about anyone in excrutiating pain 24/7

They do not get correct initial treatment 

They cannot get referrals to consultants /neurologists etc 

The NHS waiting lists for any of the good neurologists is 6 to 8months

And even then the only good treatment is only available in the USA which is unaffordable

Meanwhile the idiots who caused the injury get off scott free and you can guarantee she will be denied all disability benefits because she is only 18.

This country is a total disgrace in the way patients are treated never mind the sick or disabled 

126 Replies

  • send a copy of that to every member of this horrid Government 

  • They don't care they can afford private medicine

  • Sorry you feel that way about our NHS, But I think it is worth fighting for, Because there are many many thousands of great people working in our NHS who work tirelessly day after day, and like you I'm angry with our NHS , but they do great things in it , and the principle alone of treating everyone the same, can and does seem uncaring and even criminally negligent to others, but all that said, we have a great NHS and it's bound to make mistakes, but at least it's trying it's best, and as for the rotten apples within it, well they must be found out and driven out and into the private sector where they belong, because if  they can't treat everyone equally and with compassion, then they do not and should not reside and work in our NHS , as sadly so many do, and they are giving our NHS a bad name.

  • Don't worry. It will soon all be sold off. privatised) then it will be 'cherry picked' and only those that will get better will get any help.

    CP patients will get nowt and certainly not any medical insurance.

    Then there really will be something to complain about

  • So sorry to hear about your granddaughter, I have suffered in the past with dreadful continuous pain in my back & migraine, I was put on Amitriptyline, really helped me.


  • She has been tried on that and every other anti epilepsy /ant depressant drug they all turn her into a zombie ot a crazy person or the side effects are horrendous

  • Me too with the anti-epilepsy & Anti Depressants, horrendous side effects, Amitrip was the only one that helped me, started on a very low dose of 10mg, does make you feel very groggy for the first 2 weeks, but does wear off, it literally saved my  life. I hope you are able to find the right treatment for your granddaughter very soon, best wishes.

  • I too had the same results.I am currently trying CBD oil,which doesn't take the pain away but makes life more bearable.

  • She did try doing that with amitryptaline but it still made her like a zombie

  • I am very sorry to hear about your grand daughter.  Just keep pressurising the doctors and never give up.   Can she pursue a case against anyone for negligence I wonder?  

  • Been pursuing a legal case but the 2 companies involved have both failed to inform their insurance Companies despite being chased relentlessly for insurance details so insurance companies are refusing liability hence we are left suing the companies who will of course declare themselves bankrupt

    The whole thing is a nightmare because the only want for her is to go to USA and put ourselves in hock in the process

  • She will receive disability if she is 18 or over. 

    My advice to is go see citizens advice Beurea who can help with this process and filling out paperwork if this is something people struggle with. 

  • I think you will find you now have to be 21 but i will investgate

  • I guess that's something but it sure will not replace the massive income she should have been earning when she graduated

    Her talents are/were  the top 1% in the country as Oxford recopgnised

  • I am absolutely horrified and appalled as what you are saying has dawned on me.

    Your G/d possibly had the potential to earn lots and lots of money. That has been taken away and you are bitter and twisted that there is no medical cure in the land that can reinstate that possibility.

    There is no mention of love and support for this young lady as she grows into womanhood and what lies ahead for her. No compassion or care. All you want to do is blame the medical profession who struggle daily with long hours and little money. These Doctors who have gone though years of training who then come face to face with you.

    Stop and listen to yourself.

  • I don't think the criticism is of the professions but of the incoherent system which is inevitably crumbling

  • I'm in total agreement with you pat   It's sad when money is pursued  & to blame the NHS  they are overworked / underpaid ( I know this to be true)  how about going to evening classes & retraining in another  profession or update  the one she started. With love & support she can do it ,& please stop knocking our NHS as its already understaffed  

    But I do wish her well and success  in whatever  profession she decides to follows & advise her to be more positive thinking .



  • Peggy sadly unless theres a solution to the current mass of problems theres not a hope in hell of studying for anything

    she cant even read it all hurts so much and her eyes are affected too yet we know its not migraine

    she is just existing day to day and very very unhappy as theres so much she would so dealy love to do

  • The positive will come through, hopefully, after the normal feelings have been allowed to come out. Like bereavement for a life that might have been. Anger, guilt, blame and denial.

    One thing which can be said about those who have any disability is... we are inventive. We have to be. Find our own way of doing things which won't apply to those able bodied.


  • Hi reallyfedup

    We can all tell that you're really bitter at the moment, and so you should be about the accident. I'm not sure though why you think the NHS doesn't 'care about people in pain 24/7'? All of us on here are in pain all of the time and without the NHS would've probably given up long ago!

    You say your granddaughter has been given many medications to try; we don't know how any drug will help unless we try it. We all totally understand the relentless "let's try xyz drug for a few months" scenario but if she's been offered these drugs then how can you say the NHS doesn't care?

    Waiting lists are long for any NHS referral; unfortunately your granddaughter is caught up in this country's problem with too many people having access to it.

    Your issue is surely with the appalling situation that you're all in; I really think your frustration would be better channelled at fighting for your granddaughter's claim against whichever company & whatever circumstances it happened.

     She can claim benefits at 18; I know it's so unfair that her life is currently as it is. As others have said, the CAB will be a good starting point.

    You're having to watch all of this happen, you're powerless to change what's happened - something horrendous happened to your granddaughter and you're obviously finding it really difficult to accept that she's still in pain. It must be awful but this forum will listen and support you but most of us can't give replies to such remarks about the NHS; it helps me and the vast majority of people on here. Of course there'll be examples of 'useless consultants' or 'waste of time appointments', that's going to happen in such a huge establishment but the majority of the staff really are doing what they can.

    Maybe if you list the medication she's tried, then some of us may be able to offer experiences of some she hasn't tried? What about physiotherapy? Massage? Pilates? Yoga?

    Does your granddaughter have access to a pain management team or clinic? If not, ask or plead even, to get her seen. Hospitals have a PALS system if you feel you've not been given the correct treatment; maybe write to the chief executive at her hospital to explain the situation. You may feel it wouldn't be looked at or listened to but chief executives don't like getting those kind of letters so you should get an answer of some sort.

    There are lots of avenues to explore; don't give up!! I hope your granddaughter gets some help & relief.....


  • I wish any of that was true

    She has tried Amitryptaline , pregabalin, fgabapentin, venflaxin, indomethacin , duloxetine, diazepam  to name but a few along with Botox.naprosyn, aspirin, codeine , morphine

    The last neurologist she saw and Headway said ...........she has this for life should not be on any pain killers etc but should just get on with it and on no account should be given morphine patches which is the only thing that gives her any relief from the pain let alone a few precious hours of sleep which is constantly broken by stabbing pains

    That neurologist is not even prepared to write a report to that effect either as it would be difficult for her !!!!!!!!!!!!!!

    Waiting 6 to 8 months each time for different recommended Neurologists simply compounds the problems

    She has been waiting since Dec for the Countrys top Neuro but are no where near getting an appt

    We have tried Acupuncture




    None of which makes any difference

    I am on top of the legal fight but companies and their insurers are B******s at evading responsibility

  • I suggest she or someone writes down all that has happened and dates so you have a diary.  Include as far as possible the dates of medication she has been given and why.  Yes and I agree with RAYJAYC.  Go armed with this info to CAB and let them sort it out and also write to PALS with the same info.  

  • This is a very angry post with too many points to cover in one thread.

    Maybe you and your Granddaughter would benefit from counseling to help get through that anger? Left to fester it will feed itself and a young life really will be wasted.

    Many people both here on this forum and further afield are in chronic pain through no fault of their own. ( In my own case i have been registered blind for over 30 years through a genetic defect. It is inoperable, incurable and irreversible. I was young too?

    Looking at what she could have been or done isn't actually helpful to her. Pain management say what is past is that and should stay the past. It is all part of learning to live with pain. Like a bereavement = anger at why me? Blame - has to be someone's fault. Denial - that is one off the hardest to move on from. Some people never do and always remember the life they had when they were fot and pain free. That has gone. Dwelling on it causes more mental pain and bitterness.

    Stop and think what she can do.

    Disability benefits aren't as generous as they used to be and harder to qualify for but at 18 she can apply for them. No way will it ever cover her living costs but will help make life just a wee bit more bearable.

    So don't lash out at everyone it takes energy which is best directed at those who maybe able to help.

    Good Luck and your Grabddaughter will always be your Granddaughter whether she has green hair, 13 toes and chroonic pain. Love her just as much

    Pat x

  • I think none of you understand the incredible frustration and feelings of hopelessness that granddaughter is feeling ........unless you have the intellectual capacity she has but cannot utilise it because your head hurts so much and all the doctors around you think they know more about your pain than you who is suffering it does you will not understand ..

    If it was a hand or arm or leg or back yes of course its extremely tough to cope with but when its 24/7 headache and even the slightest movement hurts inc bright lights, noise etc its impossible to try and enjoy anything and anyone watching the patient who is shell of their pre injury self then and only then do you understand

    None of us believe the doctors have actually explored every possible option because they are hidebound and refuse to think beyond very narrow boundaries instituted by the NHS

    Until you get to know the restrictions placed on GPs , Hospitals, Consultants you will not realise that other options only exist if you can afford to pay for them

    I doubt many of you are aware that GPs get differing amounts per patient depending on which area their practice is in ............if Gov deems the area to be rich because a high % of residents pay 40% tax they reduce the amount paid to GPs by 20 or 30% yet property and doctors surgurys and salaries in that area are far higher can that be fair or reasonable

    Equally many hospitals do not have certain specialities so you have to travel 100miles away to see anyone add that to the pain your already in never mind the costs and your penalised

    Yes I am angry because just coping and battling with doctors day after day to get referrals or prescriptions etc is exhausting .........not all GPs are in anyway helpful or understanding and in many areas so overloaded with patients you simply never get to see same doctor twice

    This all leads to stress and confusion and more and more despair from the patients

    Far too often my granddaughter has quite rightly said ...........if this is what my life will be I do not want to be here and I do not blame her one iota

  • Some of do know the frustration we have been there wanting the cure and losing the intellectual capacity as a result of the health disability.  Sometimes there is no cure only management of a condition to stop it getting any worse than need be.

    Your granddaughter's situation is similar to bereavement and all the ramifications that has.  She has lost something that was important to her and have the grief that goes with it.  You have also lost something and have to deal with the grief.  As you know everyone's grief is different.  You cannot hurry the process it will take what ever course it chooses.

    The NHS has to be navigated.  When you experience a long term health disability you will come up against NHS corruption.  You will have learn what is helpful and what is not.

    Hope this has been helpful.

  • I know to a certain extent how your granddaughter feels I suffer from chronic migraines well got diagnosed with post traumatic migraines and headaches which means I live with migraines and severe headaches on a daily basis due to a moderate traumatic brain injury I suffered from back in march 2011 I almost died but didn't, it took me nearly 4 years since I suffered the brain injury to actually get the diagnosis as doctor's would just call it a mild concussion when it was and still is much worse than a mild concussion, I also have tinnitus balance issues and partial deafness in my left ear and now starting in my right ear, plus all the problems with my legs not because of my fall, and add the problem I have with my heart also not due to my fall, as the saying goes if I was a horse I'd be shot by now and I honestly don't know how I cope with the severity of my migraines and everything else I deal with, I'm on medication for my heart problem but that makes my migraines worse so I'm having to take more painkillers to help with my head which don't help my legs or my back pain which is also due to the fall which lead to my TBI I have a curved and squished spine which means I stopped growing from the age of 19 I'm now 24 and live with back and neck pain I was 5 ft 4 when I was 19 and still growing I'm now around 5 ft 1 and feel like I'm shrinking more which may or may not lead to spinal surgery, I may also need surgery on my legs and head due to an inverted skull fracture that may be causing pressure on my brain,

    I'm waiting to see if I bechet's syndrome as well which if I do will mean trips to a hospital either in liverpool, london or leeds (I think those are the only hospitals in the country that deal with people with bechet's) I live in greater manchester which will mean travelling to a hospital in liverpool if there are any places if not then the one in london or leeds, which will cost me god know's how much.

    I get referral's to different departments but that's all you can do is wait as like other people have said waiting times are quite long for some departments and it depends on how severe the problem is, I'm getting referred back to the neurology department, I've suffered a TBI so I'm more likely to get a referral sooner since I've recently had stroke like symptoms and hit my head again :( and now am suffering from new symptoms but even if it takes me 6 weeks to get the letter through I won't complain because the nhs is stretched to the limits with so many people going A&E with a cough or a cold, I went there last saturday because my knee had been dislocating over the previous 2 weeks and the pain was too much, I could barely walk at all and my knee kept giving way on me, the pain was even worse than the worst migraine I've suffered from, and there was a few people there that seemed fine and was just coughing and/or sneezing, I know this isn't what you wanted to hear but I think all any of us can do is be patient and just wait for the referral to come through the post or for a phone call to book an appointment,

    I really hope your granddaughter feels much better soon and gets seen by a neurologist or a specialist.

  • I have not said any of you are stupid or that she is superior but what is very clear is that the wait to see some specialities on the NHS is way too long and the result is that treatable conditions become untreatable which is not beneficial for the patients or the country .

    That means that only the rich can get treatment via private appts and thats plsin wrong

  • If only the family did drink ,smoke,have sky tv or luxuries they could give up but they simply do not , her mother is far from well  and i exist on state pension.

    Its precisely why on also finding out the insurance companies involved wont cover her because the 2 companies have failed to obey terms of their insurance and will promptly go bankrupt to avoid their responsibilities that leaves her high and dry and even with no win no fee theres a hefty insurance bond that will have to be covered .

    So sadly i have absolutely no idea where money can come from to cover private bills .

  • Daniel the NHS waiting times are too long !my consultant told me that,also my daughter has moved to America so she can specialise in Digestive diseases as the funding is not available here ! That's the reason why the waiting lists are so long we can't keep the people who want to specialise in this country the costs to study are too high, my Daughter has duel nationality and gets help elsewhere if she stayed here she would end up almost £100k in debt by the time she has finished studying (she has already qualified in this country with no grants or help from this Government)

  • Please re-read that first paragraph about none of us understanding frustration or hopelessness; read it again and then think about how awful your comments are!

    What do you know about our intellectual ability? 

    Do you honestly think that because your granddaughter is super-intelligent then she must be suffering more or have worse pain?

    We ALL have frustration and we ALL have times of utter hopelessness.

     Is your post about;

    1. The worry you have that your granddaughter is in so much pain?

    2. The NHS is basically rubbish?

    3. The family's loss of a huge financial income?


  • you have misunderstood what I meant granddaughter is feeling so much more frustrated quite simply because she just loves to study its been super easy for her and for her the loss /inability to do that is monumental she is just one of those people who finds everything else mere trivia ......I never suggested anyone elses pain or intellect is less important

  • Yes you did reallyfedup; like I said, re-read your paragraph starting with

    "I think none of you understand the incredible frustration........."

    You implied that we don't have the intellect of your granddaughter thus can't emphasise at all.

    I'm not going to repeat myself again & again but your post is insulting regarding her academic ability and finding anything else 'trivia'!!! The rest of us on here are content with mere trivia are we??

    Please consider the community you're conversing with; if you want help, support or advice then we'll gladly comply but we shouldn't have to deal with accusations of 'low intelligence' neither should we be told that your granddaughter has more/worse pain than us.

    Wherever our pain is & whatever circumstances brought it about should not be compared to anyone else's. 


  • That is not what the Lady said I suggest people try to understand she is suffering as well! Perhaps some could be better worded but how often does anyone really think what they have written may be misconstrued, read between the lines and be a bit more sympathetic .I understand when you see a loved one suffering you don't think anyone else understands, I think she was saying "Can't you understand the pain her granddaughter was going through, with her intellect and glowing future it Feels worse" not that her granddaughter was more superior ! As far as the NHS not caring it is made to appear that way because of all the cuts Drs are tired and sometimes a bit rash and irritable ,blame Hunt if you can find the coward

  • This is not a government issue.  This is a carer's issue.  Whether we like it or not there is a lack of resources.  The NHS cannot provide everything that is needed.  No one wants to pay the increased amount of taxes needed.

    There is the complementary medical path which has to be paid for, but can benefit many people.  Three treatments come to mind: McTimony chiropractic, Sports Massage and Alexander Technique.  Try these, see what transpires and go back to the GP with what they found.

    If someone has something that a GP does not know about and cannot be seen you will not get a referral.  The GP's are overwhelmed with medical problems that they do not know how to treat.  The consultants have a waiting list that is too long.

    I pay for my own medical treatment because there is no means in the system for me to get what is needed for my particular health disability.  I am fighting to get what ever I can.  So are a lot of other people with health disabilities.

    This is how it is.  You cannot blame governments for this situation.

    Sorry, if it is not what you want to hear.

  • Don't talk Crap it is the Government who are lying about underfunding !this Government is "Failing in its Duty of Care" I also have to pay for help due to disability only because this Government has cut local government funding for disability support and Services ! The government would rather help its corporate friends and rich party doners than enforce tax laws so the NHS can be properly funded ! This was proven by Brandon getting  a £500 million contract to run a NHS hospital site!Please try and prove me wrong

  • The government pay money.  The managers who set the policy are the ones who need looking at.

    If you tax a rich person too much they go and live in another country.  They have the means to live where ever they choose. 50% of nothing is nothing. 40% of 1 million is 400 thousand.

    So if the tax rate is 40% the exchequer gets 400 thousand.  If the tax rate goes up to 50% the rich man leaves and the exchequer gets nothing.

    The government follows the law on tendering.  The tendering process is overseen by lawyers who ensure that the tendering process is followed as defined by British law.  Unfortunately lawyers do not ensure that proper quality and reliability clauses are set into the contracts.  This is because lawyers do not understand technical details.

    I have been to many meetings where hospital managers lie through their teeth about what wonderful things they have done.  It takes about six months to track down the decide and by that time they claim they have corrected the problem and you have to start all over again trying to determine fact from friction.

    There is a funding shortfall.  This is because there are a lot of older people who do not pay tax and not enough young people paying taxes.

    It is very easy to give soundbites on part of the picture.  It is a lot more difficult to go and get the full information.

  • Going by the "Full info" yes too many managers and not enough ground level staffing is a problem, as far as the tax situation is concerned I used to regularly pay between £100k and £200 k tax every time sometimes even more ,I happily paid (even though most of my earnings were overseas) Too many people are under the belief that lift the tax and companies will leave in droves or even individual high earners will leave rather than pay the tax concerned, I can tell you that is Bull originating from Governments too afraid to Demand tax is paid properly! FACT! Companies come here because their services are needed or its the best place to manufacture or sell their products, so an exodus is highly unlikely same as whether we remain or leave the EU. Fear mongering most people see through the Myth ,surprisingly many folk like myself can't get it in to their heads what is going on, I saw through it when a Company I was involved in tried the same bull to get a government subsidy ( it worked,) I left the Company! I worked as a soldier then in private enterprise until it became too much to carry on ,pain is debilitating ,I have used my savings looking after family and friends now I get DLA and Mobility without which I genuinely believe I couldn't go on ,but please John keep believing what the media say or do a bit of research and find the truth! I DID!

  • reallyfedup123 your reply to us who are trying to help was harsh.

    Is it harder to be 'struck down' while still a teeneage yet young enough to adjust to what her new life will be? Or be someone of 40 who will have a family, good secure job they love then have all that swept away in an instant? Family do not understand and leave him?

    To say we do moy understand her pain in the head is so wrong.

    Do you want a cure? To bring back that sweet intelligent teeneager back? Do you want pain releif? Are you certain any of that is achievable?

    I go back to my suggestion of speaking with someone who can channel that anger. You certainly can't and if you speak to consultants like you speak to us it's no wonder you don't get anywhere.

    Your Granddaughter needs love and support. Not someone fueling her frustration.

  • Well said, Paton.

  • Dan - that really is an awful comment you've just made to someone who has just as much right to express her views on this forum as you or I. Are you deliberately trying to inflame the situation here? I've seen you do this before here.

  • If you define being a "trouble maker" as someone who:

    1) Isn't afraid to call someone out on a forum for bullying and abusive behaviour, and

    2) Recommends that people labelled with fibro check out other causes of joint pain such as vitamin D deficiency and hypothyroidism (a misdiagnosis which happened to me)

    then, yes, I am that "trouble maker" and proud of it! ;-)

  • Nope, never used a pic on here. So you must be thinking of someone else. The only person I had an "argument" with (except it wasn't an argument) on the fibro forum was the admin, MDaisy, who didn't like me posting about possible fibro/thyroid connections.

    Vitamin D deficiency may certainly lead to chronic pain. There's more research on it nowadays and more recognition of this, so it definitely isn't rubbish. See this info for starters:

  • That's OK. At first I didn't know why she objected to me posting links talking about this - she just kept removing them with no explanation. I persisted (I'm stubborn like that - lol). Eventually, by PM, she told me it was because the links contained adverts. They're very strict on the fibro forum about not advertising in links. The problem is most websites nowadays support themselves with google ads - so that seems to rule out posting any useful links on the fibro forum. Hence, in my opinion, it isn't a very useful forum at all. I'm not interested in doggie pictures - I just want to find useful information which might help me understand and manage my condition better. :-)

  • Its not only links i and several others have been banned because we dared to suggest they needed proper testing for hypothyroid especially central hypothyroid which cant be found just testing  TSH

  • Funnily enough I've just posted over there in response to a newbie this evening. She's been diagnosed with fibro - but also hypo so it was possible to mention it to her fairly "cautiously". I've done this a few times since the admin there changed and haven't had a problem. They seem more open to this now. It will be interesting to see what happens this time ....

  • Oh do you mean the author is no longer in charge?

  • No, he seems OK. It was MDaisy I had problems with. Er .. are we going to get into bother for talking about admins from another board here? *looks around sheepishly*

  • I mean, no he's still there.

  • Problem remains then noughts changed

  • Dan if your talking about Fibro forum

    They have banned countless people for daring to even suggest full tests for hypothyroid should be done ......yet today theres a poll  on the fibro forumwhich asks which came first Hypothyroid or Fibro ....

    that's crazy because fibro is a very well recognised symptom of hypothyroid so the forum shoots itself straight in the foot

  • Hello CarolineC57 & reallyfedup123

    I wondered if you would be interested to read my views on a few points raised here regarding me personally and the FibroAction Community (now Fibromyalgia Action UK) If so, I would welcome either of you to private message for an two way conversation on the matter.

    You mentioned you felt 'The community is very strict' - We certainly had guidelines to stick to, one was we didn't allow talking about identifiable people on community forum - this was used to stop the targeting of one person which meant nobody felt bullied or embarrassed about being spoken about openly for all the community to see ! I personally think that this is a quite good rule don't you? We also private messaged people rather than approaching them in the main community out of respect plus other members could not join in on a conversation again to stop one person being targeted on a community of a public forum.

    I sincerely look forward to speaking with you further should you wish to

    All the best

    Emma :)

  • Totally agree Emma

  • Hi Mdaisy - Sorry, only just got back from holiday and seen this. You might be reading all this out of context as we were responding to a person called "Dan". Since he was banned from here (due to abusive comments, etc) his posts have gone so it looks a little strange out of context.

    You and I did speak ages ago when you were admin at the fibro forum and kept removing my links about the fibro/thyroid connection. As mentioned above, eventually by PM you told me it was because of the adverts. I (and several others) thought it was because you were denying the fibro/thyroid link originally.

    So as far as I'm concerned all is good - there's no need for us to enter into any conversation by PM. I don't go on the fibro forum much now as it looks likely fibro was a misdiagnosis in my case anyway. I only respond to people there if it looks like I might be able to help (eg. talking about vitamin d3, thyroid and pregabalin).

  • As do we all well said

  • Sorry, is that aimed at me or someone else? I'm not banned from the fibro forum - I'm still there, but I don't post much. See my reply to your question above asking why the admin objected to me posting about the possible fibro-thyroid connection.

    For clarification, what I thought was awful about your comment to the OP was accusing her of putting too much pressure on her grand-daughter. People post on these kinds of forums for support, not criticism. A little diplomacy is required when talking to people here.

  • Dan

    I am well aware of pressures that can be put on kids in school however in this case your wrong

    she has never been stressed ever its all so effortless for her apart from which the plethora of symptoms she suddenly got are way beyond effects of stress they do not even equate to "nervous breakdown " .......that will come though if someone does not fathom whats truly wrong

  • 1st pain clinic apt is August !!!!!!!

  • GPs totally not interested they have decided she is disabled so get on with it she is already a patient of the pain clinic but no matter what august is 1st apt

    Uni is out the window because she is not able to do the revision for the 6 exams she needs to take to take up her place

  • Hang on. What's this...........GPs totally not interested they have decided she is disabled so get on with it

    I don't feel very comfortable with the way you wrote that. Is there a problem with having a g?d with a disability?

    Poor AND disabled. Not looking good.

    Welcome to my world

  • Paton .......essentially the GPs have written her off   I don't think its at all funny to be disabled and thus inpovershed and under attack on what benefits you do get by a mean gov

    The disabled deserve a much much better and fairer deal ...sadly its the malingerers and scroungers who have spoilt things for those in genuine need

    The new PPI is administered by a private company who are paid to get people OFF benefits not to help them and many of the stories I hear are appalling

  • It is PIP...Personal Independent Payment replaced DLA Disability Living Allowance.

    I think you have been listening to Tory  propaganda. Scroungers. Genuine disabled. The only people who 'play' yje system are not those with disabilitie

    If you g/d is going to have a condition that makes her disabled then getting facts right will help her enormously.. Yes we have had an uphill fight for years and thank goodness there are people prepared to help and fight. Having lost my sight 30 years ago at a very young age I have learnt to adapt and lead a perfectly 'normal' life.

    Don't fight everyone along the way - you won't do her any favours. Use that energy wisely.

    I know exactly who have these gov contracts, why they have them and what the ultimate goal is.

  • Paton if being blind allows you to live a normal life i take my hat off to you me sight is very very precious and it wont be long before i have to have cataract surgery so i shall have to choose the consultant wisely

    Thankfully my GPs are utterly wonderful all of them if only my grandaughter was in their area she would get far more support and help

  • Paton your a Gem' and your Blind and I never hear you complain. So to you I say , well done for keeping up the good advice and I never knew you were blind as you never wear it on your sleeve and like you so many disabled people get on with their lives and bear many many problems on the chin, just like you good on yer mate! best wishes Alex

  • Dan

    You refuse to separate out the 2.5 yrs of increasing pain she has somehow coped with and was without doubt in any ones view inc Oxford totally on course to gain her   IB with the very sudden and dramatic worsening of her condition accompanied by a plethora of new and totally debilitating symptoms which is where the NHS is proving useless .It is the very frightening and totally debilitating symptoms that have engulfed her which mean she is scared and hates to be alone and i bet others would feel exactly the same.

  • Dan I am not responding to you again ....suffice to say no 17 yrold can spend their entire life in the condition she is in .....being unable to do anything inc even read a book but lie down and exist on morphine is not a life .....END OF

  • A DR who works for an NHS trust killed my Mother yet I don't Blame the NHS I blame the trust !

  • No  one puts stress on her at all and little do you know what she has achieved despite unremitting pain in the last 2.5 years until a few weeks ago when suddenly it worsened so dramatically for no apparent reason and even morphine does not allow her freedom from pain to think ,let alone concentrate or read and her future was snatched away .

  • Hi reallyfedup123 

    I might not have the intellectual capacity that your granddaughter has, but let me tell you this now, that your thinking is very wrong. For I and many of the people on this forum do understand that incredible frustration and feelings of hopelessness as we have all been through it and some of us still go through it.

    We deal with chronic pain 24/7 and yes we may be on painkillers which often don't take away all of the pain just mask it a little and take some of the edge off, but the pain is still there relentless. We get side effects from the medications which some of us put up with as we have no choice.

    We all had a life before our health issues whether or not we had the intellectual capacity, and for a lot of us it's impossible to try and enjoy anything, myself included. And we all have families that can see we are a shell of our pre health problems self.

    I do understand your anger though, I myself still hold a lot of anger towards the GP who misdiagnosed me. If he had done his job properly then I wouldn't be going through all of this. Because of all this I have no quality of life any more.

    As RAYJAYC said in an earlier post, maybe it would be good to get a referral for your granddaughter to a pain clinic, they will be able to give her more help. They don't just have pain management doctors there, they have a host of other people.... Physiotherapists, Psychologists, Anaesthetists. I have just started to go to one myself, and yes, there is again a waiting list as is the norm nowadays. But I see a psychologist there and I talk through all my feelings of anger, frustrations, etc, with her and it does help some.

    I hope this has helped, and I am very sorry for what happened to your granddaughter. I hope you find the answers and help for her and that one day she will get better.

  • I am absolutely horrified and appalled as what you are saying has dawned on me.

    Your G/d possibly had the potential to earn lots and lots of money. That has been taken away and you are bitter and twisted that there is no medical cure in the land that can reinstate that possibility.

    There is no mention of love and support for this young lady as she grows into womanhood and what lies ahead for her. No compassion or care. All you want to do is blame the medical profession who struggle daily with long hours and little money. These Doctors who have gone though years of training who then come face to face with you.

    Stop and listen to yourself

  • The doctors do not come face to face with me ........because I simply don't go

    I dare not or I would loose it with them big time

    She is getting all the love and support quite simply because she is so darn scared at what is happening to her she is never left alone hence her mother cant work unless I or her siblings  sit with her .

    Because the incident happened in property rented by her older sibling she is now traumatised and blaming herself for her sisters condition so its double whammy on a family already struggling to cope

    Her Mother records appointments and listening to them is totally appalling

    the attitude from doctors is so darn callous and uncaring its heartbreaking

  • Welcome to the world of Chronically Sick and disabled people  in  2016. And as many carers who juggle work and unpaid caring or give up work completely.

    Reality check. You are one of thousands and thousands of people struggling to cope.

  • Unfortunately what you say is true.The NHS is overwhelmed with too many patients and not enough resources.The situation is worsening.I am voting out of the EU and saying no to TTIP in the hope that we may retain some control over our health service.My surgeon told me that the NHS does its best under very difficult circumstances.

  • Not wishing to get too political being in or out of the EU has nothing to do with the state of our wonderful NHS.

    It is the Tory plans, and other major parties too, to privatise the NHS and make money. ( For themselves yes but their very rich 'friends') It is along standing plan going back to the 90s and beyond.

    Schools, social care - you name it.

    If UK comes out of EU all the Human Rights laws, DDA or Equality as it is now will be rewritten and we as sick and disabled people will go down the pan.

    Why do you think our social care is non existant? Why do you think so many cuts to disability, working people? You think it is bad now? Just wait and watch

    Another very very good reason for wanting to move away.


  • Sorry to contradict but the EU has a great deal of power within the NHS.The TTIP plans also would render huge parts of the NHS as a corporation,owned and run by an elite which will not care for the needs of our population.I do agree about the Tories but as I used to be a member of the Labour party before I saw the light they would do exactly the same.Look at the PPI scandal.Forget party politics it is pretty much a scam.

  • And there ain't nothing in this world that's going to stop any of it. Nothing

    But please go ahead and support IDS for coming out of EU and Good Luck


  • I don't support ANY MP here.I do support democracy though.As we have no power in the EU it is a good place to start.Commissioners hold the real power,unelected and unaccountable.That is my sole purpose to encourage people with the truth.It helps me wade through my own pain also!

  • I've already commented on this post, if you'd like to read what I've put about being in a lot of pain 24/7, having to wait to be seen by neurologist etc etc, I'd really like it if you did read my reply to one of your comments,

    You say your G/D was hit by a plank of wood to the head, has she ever had an MRI or CT scan? to rule out damage to the brain and that's what's causing the migraines? for nearly 4 years I was told falling 20ft on to my head did not cause any brain damage just a slight concussion, february 2014 I got told by a neurologist that I had in fact suffered a moderate to severe traumatic brain injury, and quite recently I've been told that the migraines I have could be a result of the inverted skull fracture putting pressure on my brain my skull was fractured because I was unlucky enough to land on a stone which broke my skull and now I live with a dent in my head also my skull is weaker than most people's as a result, I'm now waiting to be referred to the neurology department again, yes we can't all be seen by top neurologist but I got seen by a fantastic neurologist who by the looks of it had only been qualified for a few years as she wasn't much older than me back in 2014 she was the doctor that diagnosed me with the TBI, she was fantastic I spent 2 hours in the hospital during that appointment and couldn't have asked for better treatment she listened to me, wrote it all down and spoke to the senior neurologist and then back to me with all the answers to my questions the only question I forgot to ask was about the dent in my head because at the time I didn't know whether it was the tissue around my skull inverted or if it was the skull itself that was fractured inwards towards my brain.

    If you can get an appointment to see any neurologist take it whilst you can, to be seen by a neurologist at a local hospital only should be around 6-8 week wait,

    I hope your G/D feels better soon.

  • Yes she has had 2 MRI and 1 CT scan

    she has been seen by GOSH who we should not have believed because they insisted it was simply concussion and would clear in 2 years

    Headway say she should have been told to rest body and brain after the injury but that's not what hospital said

    The local neuros refused to see her after we waited 7 hours in AMAUnit

    and instead referred her to headache unit 60 miles away where the neuro flat out said  " you have this for life " get off all pain meds and get on with it

  • Headway is right your G/D should have been told to rest her body and head, before I got discharged the doctor that saw me told me to rest for at least a week if not 2 weeks and then after that gradually increase my day to day activities, etc,

    I've had 2 CT and about 4 MRI scans on my brain and it looks like I may need another scan because of the fracture to my skull,

    most doctor's say that concussions clear up within a week or 2 up to a few months depending on how bad, if you're getting told 2 years then it seems like there was damage to her brain, I got told that the damage to my brain after an emergency CT scan back in 2011 I was told the damage was getting worse and that I would stop walking within 6 months, and that the bruising to my brain would clear up within a year, some of the bruising was still there 2 and a half years later,

    A concussion is classed as a mild TBI depending on the severity of the concussion, that's what I got told off the neurologist I saw back in february 2014,

    How come the neuro's refused to see your G/D and what is an AMAunit?

  • AMAUnit is  Adult Medical Assesment unit its  kind of step up from A and E which GPs can get patients admitted to that the only time I went with her and I kept quiet because otherwise I would have lost it the treatment of patients all round was appalling

  • Lets start from beginning

    She has had a dull background headache 24/7 since the injury pain level 3/10 which was interspersed by " fireworks sensation/ lancinating pains " from site of the injury 3 or 4 times a week initially (9/10 pain level)  over the course of the 2.5 years the frequency of the lancinating pains has increased to many times a day along with waking her from sleep ..........each session often meaning she had to lie down for up to 2 hours at a time

    All the many " neuropathic " meds that were tried gave her awful side effects which were utterly frightening that she was told by doctors to stop them and none of them touched the pain

    So she kept on coping but the sleep deprivation and inc frequency of "lancinating pains " took their toll

    Last August she was assured it was severe Nummular Headache and Botox would fix that ,,,,,,,,,,,,sadly proved not to be true

    4 weeks ago she was suddenly hit by feeling her head would quite literally explode and severe pain from her neck all the way round her head and sensation of knives stabbing the point of impact on top of all the previous symptoms .........the only thing that remotely touches the pain  is just last 2 weeks of morphine patches she has not had them before that and they are not causing or exacerbating the symptoms .........(she is not a wimp when it comes to pain because she never even grumbled when she dislocated her knee a while back which would have most people writhing in agony )

    So quite whats going on we have no idea although I have my suspicions as to what it is .........its certainly not migraine , its not stress  induced and you would have to read her school report to understand why I say that .....she has from a very young age just absorbed information way beyond her years like a sponge and adored it all it was never a stress or pressure to study she just loved it so to now barely be able to think because of the pain for her is torture

  • Dan

    To me the benefit system is indeed for the most needy hence why no one has tried to even think about claiming because up till 4 weeks ago she coped and did not complain despite the pain levels

    10 A Stars and what should have been 40 in the IB if that helps you understand what she achieved and a just 1 in only 10 places at Oxford ( 400 interviewed)and no you cant home study for Law at home sadly

    right now the pain wont allow her to think let alone study

  • Hello Daniel 87 How about looking at why this person is mentioning school reports. NOT to give her accademic reports but to say she was not stressed at school. I do feel ( and I may be wrong) that you are reading this post in a totally different way to how I am reading it. Really fedup123 is giving an example as to why it can't be stress because she had great school reports. I'm reading here that you want an augument ( again I could be wrong) Consultants do ( as in my case) give their word they are going to fix you by operating on one only to find in my case, they gave me Pudendal pain. And it took  at least 6 years to get some sort of diagnosis. As many doors were closed against me.

  • There are some fantastic dedicated people out there,finding them is another story!

  • That's precisely the problem ........if they are good their waiting lists are horrendously long

  • Have you seen my reply about your G/D ever having had an MRI or CT scan? she could have suffered slight damage to her brain which won't show up unless a scan is took?

  • I actually think she has severe occipital neuralgia now but the Headache unit neuro dismissed any question that the bang on the head might have caused pressure on the nerves in cervicasl spine /occipital area when her Mother asked the question

  • I'd suggest you take your G/D back to see her doctor/GP with any evidence that she may have this, this may be printing out symptoms from the NHS website, writing down anything but also have your G/D explain what she has to go through, how bad the pain is, where the pain is, when the pain started etc, hopefully then you will get a referral and the doctor you see whether a headache specialist or a neurologist they will be able to read what the GP wrote and hopefully your G/D will get some better treatment, but all any of us on here can do is be patient for the referral to come through, wait for the appointment and not everything will be sorted in 1 appointment.

    I've only ever spoke to 1 other person with what I've been diagnosed with but the thing that you said sounds more common.

  • Hey, I've been looking through in regards to age.

    She will get ESA... Employment support allowance.. Which is given when someone can't work due to health.. To do this she will need sick lines first from doctor and then she will eventually be able to transfer after a few months. 

    Same with personal independence payments (pip..previously dla)

    She can apply for this too.. As long as she is over 16.

    As an adult she's entitled to it. 

    To prove this still.... Disabled teens.. Aged 16.. Can drive with their pip award of higher mobility component on pip. 

    Hope this relieved some stress.. Again.. I suggest you see citizens advice to get help and advice. Also your doctor and also your local council if there are care components needed. 

    Any more questions feel free to direct message me

    God bless 


  • Thank you Andy for your help

  • I take paracetomal or ibrupofen, I'm on heart medication as well but even though I'm in pain throughout my body, I won't take too many painkillers and will not take things like vicodin or morphine as you can easily become addicted to these pain meds and that's not what I want to happen (it's not fibromalgia because the pain in different parts of my body are due to different reasons, my legs grew wrong when I started walking as I started walking before I was 8 months old as well as sitting in the 'w' position up until I was 15/16 years old, my back, neck and head pain is due to my fall back in 2011, my chest pains are due to my heart racing to fast every now and then but that can get so severe that I passed out from it once probably due to lack of oxygen getting to my heart and organs and I've had that pain since I was 16 and palpatations since I was 13, I have pains in my shoulders, knees hips and other joints possibily due to bechets syndrome, and I have pains in my wrists due to the damage I've had over the years, I've broke my left wrist 3 times, severly sprained it 4 times and severely sprained my right wrist 4 times and strained a tendon in the same wrist once)

    people on this forum live in chronic pain, I suppose all we can ever do is try to control the pain and try to do every day to day things for some its not to bad to do but for others trying to just get out of bed in the morning is excruiatingly painful, I've tried to change my diet, I've lessened down on the sugar and salt, I've started eating more fruit and veg even if my family don't like fruit and/or veg, I try to eat less meat than I used to and try to eat less processed food and junk food than I used to, yes I occasionally will eat things that are bad but with these simple diet changes my pain is becoming slightly more manageable, I'm still in chronic 24/7 pain but no where near as bad as it was when I was eating anything and everything because I was I suppose mouring for the person I had lost and I couldn't see the new person I had become because of the TBI and the pain I was in, I finally accepted the new me around 2 years back which is when I finally decided to start sorting my life out, it was then and there that I started slowly changing my diet, I started increasing the amount of fruit and veg I eat on a daily basis, I also take a vitamin and mineral drink daily which seems to be helping, this is helping my back and neck pain, to a certain extent it is helping my migraines but nothing seems to be touching the pains I have in my legs, after 8 years I've finally accepted the fact that I may have pains in my legs for the rest of my life, I hope not though,

    I'm sorry for the spelling mistakes, what I'm trying to say is have you or your G/D thought about possibly changing her diet to include more fruit and veg, less salt and sugar, less processed foods etc? obviously it might not help but it's worth a shot if your G/D is in as much pain as you say she is in, it might help somewhat. And I'm sorry for the length of this comment.

  • Thank you Amateur writer

    yes we are always very careful about diet and always have been so no concern on that score

  • Sorry to hear about your granddaughter. It is so true that NHS in some cases is terrible service. I pay huge amount of taxes but when doctor told me that my on-going chest pain after angioplasty is something they can't do anything about and I should take it as a part of rest of my life. It makes me sick and kills my mind but what you can say to the doctors. How on earth you can live with pain for every min of your life?

  • qfqf

    you indeed have my immense sympathy

    there are somethings its possible to cope with and some that its not

    sadly many doctors do not like to admit or face that

  • I understand where your frustrations are coming from. 

    I was in car crash 2 years ago and left in severe pain and poor mobility and bladder issues. I was told 4/6 weeks on pain.. Then 3 months then 9 then 1 year and it's just a joke.Was also told my bladder and not being able to go due to pain in stomach was in my head and was in and out of hospital 7/8 times to be catheterised and still never got referral.. When I did 18 months later.. Was told my bladder is not working due to issues which could have been resolved long before! So now I have to have surgery to fit a urostomy bag.. 

    I'm 28! 

    So I know the NHS system is a joke but how you react is key to help your granddaughter... She's the one living with this the most and if you go on about it around her (not saying you do).. But it won't help her in her esteem etc... She's got a whole life ahead and she can and will find work.. May not be what she wanted.. Just like I lost my dream job I had in funeral directing.. 

    But it will work out.


  • Good post, Andy (and sorry to hear how you're suffering too). I'm another one who has had many years of first being ignored by the doctors ("it's all in your head - here, have some tranquilisers/antidepressants"), and secondly being misdiagnosed badly. I won't go into all the details as it's a long story and not relevant here. Basically, though, my problems could have been eased years ago if the doctors had bothered to take any notice of what I was saying to them.

    So I fully understand where those who criticise the NHS, like Reallyfedup, are coming from. I have the same frustrations and the same anger towards many of the arrogant doctors I've seen over the years.

    There are, though, many people who have had excellent treatment from the NHS and defend them to the hilt. I can understand that too. But I, for one, have seen very poor service from them. :-(

  • Caroline 

    You are 100% correct there are a few doctors i have incredible respect for who are truly fantastic however rather too many are arrogant and blinkered and sadly that is what we have encountered which goes to the detriment of patients 

    So far theres only one who has really pulled out all the stops for my grandaughter and thats the peadatrician but even he is out of his depth with this and is extremely frustrated that the direct referrals he has requested get sidelined 

    As Headway said because of her age at the time of the injury she has fallen through a gap in the NHS and has not been given correct advice or care at the outset ...thus by the time she saw the peadatrician the damage was already done 

  • Contact your local MP and the BMA harsh letter should do the trick for both name and shame the NHS Staff which have been the problems if that does not work the media 

  • seriously thinking about that  along with filing an NHS complaint about GOSH too

    we should never have believed them that's for sure

  • Take it high up MP and mr hunt deffo do aNHS complaint iv'e had a row with a jump up Gp his face was a picture ha ha ha 

  • What have the medical profession done wrong?  Apart from working very long hours and dealing with difficult patients.

  • Paton...many of the medical profession are brilliant sadly theres too many who are not

    I find it quite amazing how many ancilliary staff that seem to float around some NHS hospitals doing very little

    I know when she went to GOSH there were 6 ancilliary staff twiddling their thumbs for hours and we waited 2 hours past appt time only to effectively be told a load of rubbish if only we had not believed them and searched out real experts sooner maybe she would not be in her current state

  • some times it is worth refreshing our minds of what we all been through.

    You should  read this and it will help you to understand what everyone on this forum has experienced.

    It is is a lifetime of chronic pain. It doesn't chose it's victims.

    1. Denial

    In this stage, we are in a state of shock and refusal. We wonder how our life is going to change and how we are going to live with those changes. Denial and shock help us to cope and make survival possible.

    This stage can be dangerous for people with chronic pain and illness because if they are in denial about their condition, they may not take the necessary steps to get themselves the treatment they need.

    Example: “It’s not a big deal, it will go away” or “The doctor is wrong, I don’t have diabetes.”

    2. Pleading, Bargaining & Desperation

    This is the stage where we want more than anything for life to be what it once was. We become fixed on anything that could make our illness and pain go away -- or anything that could give us some semblance of the life we once had.

    We may find fault in ourselves and what we think we could have done differently. We may even bargain with the pain or illness because we would do anything not to feel them anymore. Guilt is common when bargaining.

    Example: “Please just don’t let this ruin my life” or “If you make the pain go away, I promise I’ll be a better person.”

    3. Anger

    After we conclude that our pleading and bargaining is not going to change the diagnosis, anger sets in.

    Anger is a necessary stage of the healing process. Feelings of anger may seem endless, but it is important to feel them. The more you truly feel anger, the more it will begin to subside and the more you will heal.  Your anger has no limits and it may extend to your doctors, family, friends and loved ones.

    Anger is often felt later on when the illness and pain progresses, or holds us back from doing the things we would like.

    Example: “This isn’t fair! I didn’t do anything to deserve this!” or “Just give me something that will make me feel better!”

    4. Anxiety and Depression

    Feelings of emptiness and grief appear at a very deep level.  This depressive stage feels as though it will last forever.  It is important to understand that this depression is not a sign of mental illness.  It is the appropriate response to a loss or a life-altering situation.

    We may withdraw from life and wonder if there is any point in going on.  Depression after a loss is too often seen as unnatural or something that needs to be snapped out of.  Being diagnosed with a chronic illness or experiencing chronic pain is a loss – a loss of the life you once had.

    Having a chronic pain or illness may also bring up feelings of anxiety; anxiety about what the future holds, anxiety about not being able to live up to expectations, anxiety about social situations, anxiety about medical bills, etc.

    Example: “I’m going to be in pain forever so why even bother?” or “I’m going to be in debt forever.  How am I ever going to pay off these medical bills?”

    5. Loss of Self and Confusion

    Having chronic pain or illness may mean giving up some key aspect of what made us who we were.  It may mean an inability to be physically active like we once were.  It may mean not being able to be as sociable as we would like or it may even mean giving up a career.

    You may wake up one day and not recognize the person you are now.  You may question what your purpose in life is now.  This stage may occur at the same time as anxiety and depression, or it may be separate.

    Example: “I don’t even recognize myself anymore.” or “My career was my identity.  Who am I without that?”

    6. Re-evaluation of Life, Roles and Goals

    Having a chronic condition often means giving up a lot.  We are forced to re-evaluate our goals and futures.  We are forced to re-evaluate who we are as a husband, wife, mother, father, sibling or friend.  While we once had a successful career that gave us purpose, we may find ourselves beginning to question what we can do for work in the future and how we can contribute to our families.

    While we were once able to do it all, we are now re-evaluating what absolutely has to get done during our days and how we can accomplish these goals while still remaining in a positive mood.  Re-evaluating your life, roles and goals is a crucial first step in accepting your condition.

    Example: “I may not be able to be a nurse anymore but maybe I could teach classes a couple times per week.” or “I can’t be as physically active with my husband anymore so what else can I do to show him I love him?

    7. Acceptance

    Acceptance is often confused with the idea of being “OK” with what has happened. This is not true.  Many people don’t ever feel OK about having to live with pain or an illness for the rest of their lives.

    This stage is about accepting the reality of your situation and recognizing that this new reality is permanent. We will never like this reality and it may never be OK, but eventually we accept it and learn to live life with it. It is the new norm with which we must learn to live.

    We must make adaptations and alterations to our lives. We must find new things that bring us joy.

    Example: “I’m not going to let this define me. I will learn to deal with this the best I can.”

    It's important to remember that these stages are not linear.  While some people begin in the denial stage, move through each stage and end with acceptance, many people jump back and forth throughout the stages.  I hope that these stages give some comfort to those who are experiencing chronic conditions.

  • Dear reallyfedup,

    I haven't read, all the replies that you have had, so sorry if this has already been asked but...Who/how the f..k  was she hit her so hard, for Heavens Sake?  My heart really goes out to you both, no I mean it.  Please do tell me, if it will not embarrass either of you too much, what actually happened.

    Not much, certainly that I read, gets me angry but this has-poor girl!

    Please, please give her my very best wishes, will you?

    Take care, give her my love please.  I send you both all my prayers.


  • Andrew 

    It was an infill panel about 60cm by 30cm above a boiler housing unit in student accomodation of her sibling  that had not been secured which fell from about 7ft to where she was sitting undeneath its a piece of mdf or chipboard that weighed 3 to 4kg

    So add height and velocity and the corner of the panel  hitting her head and she has sustained damage ,neuropathy and hell because all the rubbish meds make her so very sick 

    Whats worse is by the time she gets to UCLH 6 months after Dec referral the NHS protocol requiresvshe takes all these ghastly meds all over again for 4 mths at a time until finally after at least 2 years they will consider surgury or an implant 

    Her life is well and truly screwed

  • Sue the landlord Vent your spleen on him.

    Leave the NHS alone.

  • Already trying yo due landlord whose insurer refuses to cover them so big risk of landlord ddclaring bankruptcy

    If you feel 5 years to get help on NHS is ok then something is wrong with perception

  • So let me get this right....Somebody drops/doesn't secure a large lump of boarding...This falls, surprise, surprise....and no-one is responsible for your the awful damage done to her.

    Or have I got this wrong?

    Love to her anyway.


  • Yup the landlord is responsible but if they have failed conditions of their insurance and you cant seize their assets because they are mortgaged/ bankrupt the injured person is stuffed

    Sadly getting effective pain management is not available easily or in all areas let alone correct diagnosis as we have sadly found

    Either way the life of an innocent young person has been wrecked

  • Just read my post about diagnosis.

    We on this forum can give you all the info you will need about pain  management

    And as much as you want about young lives being wrecked.

    And equally as much about lives being rebuilt

    In bucketfuls.

    But in the likely event of you NOT listening to anything we have said and continuing to insult us all, the NHS and anyone else who can't offer a cure.....

    this subject has gone as far as it is ever likely too.

  • Since no one in the last 2.5 yrs has found a way to manage her pain there must be something wrong with the system somewhere

  • Noooo - SHE manages her own pain. She can, if she wants to, lerns pacing, coping etc like we all had to. Learn to adapt what she has NOT what she could have had.

     There is no magic cure to make her better That is what we have been trying to tell you for days but you refuse to listen and take advice. Continuously bashing us and nedical professions is not the least helpful.

  • She was managing to cope until a month ago when it sudenly got so bad that i seriously donot think anyone could can pace yourself all you like but if all you can do is lie down in a quiet dark room 24/7 week after week that is not living or coping that is just an existance 

  • You  said....

    Since no one in the last 2.5 yrs has found a way to manage her pain there must be something wrong with the system somewhere

    Now you say she was managing until a month ago.

    Well which was it?

  • Sounds very odd with insurance company.

    I thought your G?D had had scans, tests, medsm and the full works?

    So what haven't they done now?

    You may not be aware but very few people who walk through the doors at the pain clinic walk out with a diagnosis.

    They spend years of their time and medics time trying to find some reason or cause as to why the hurt 24/7

    There isn't one.

    It is called pain management. Not pain cure


  • What was the injury to her head exactly? I might be able to help with a contact in Germany where I had excellent treatment .I find some of the comments you have had unhelpful. The NHS is severely stretched at the point of delivery and your grandaughter is too young for the probable treatment that a neurologist might recommend beyond pain relief. You do not tell us her injury and symptoms or I might be able to give more directed help than others have done so please enlighten me so if Ican help I will do so. 

  •  A section of either chipboard or mdf 60cm by 30cm weight between 3 kg and 4kg  fell from top of a cupboard housing onto right paretial area of her head   seems its the corner that struck her head only slight bleeding noticed but a dent is evident and apparently some nerves are dead 

    Dull background headache pain level 3 out of 10     24/7 plus lancinating pains eminating from point of impact painlevel 9/10

    Several times a week initially but increasing to 100s of times a day 

    Diagnosis of post concussion

    Nummular headache

    Post concussion shooting pains

    Now superimposed by medication induced headache or chronic migraine as a result of all the different horrendous meds thrown at the lancinating pains  pain level 10/10 

    Nothing from botox right through to fentanyl patches has made much difference to her pain inc recent occipital nerve block 

    Suggestion of DHE infusion but since only private cost is prohibitive 

  • Read all of this. Not going to get into an argument & am sorry your grandaughter is going through this.

    But some NHS workers DO care, we try our best given the limited resources we have, & some if us have chronic pain too.

  • If you read all of it you would know that some NHS workers do care but powers that be in the NHS simply do not care and convienience is now driving factor in every dept yet they do nothing about charging health tourists or checking those using NHS are sctuslly entitled to .

    Too many overpaid cheifs and far too few dedicated workers especially brilliant doctors 

  • Shut up Daniel, you are becoming a bore read the OP and think about how you would feel if it were a member of your family that was suffering and the help you hoped you would get was not forthcoming and it "appeared" people were uncaring .how exactly would you write the original post? Looking back at my original post when my Mother was given the wrong medication by a NHS DR and subsequent Death my post could be misconstrued to sound as if I hated the NHS ! I Don't! I do hate this Government who have tried to decimate the NHS and sell the profitable bits to private enterprise! I also am very angry that the DR was Negligent by not checking my Mother's records ! When folk are upset trying to make others understand how they feel is difficult why can't folk here read the OP with a bit of Compassion and understand how difficult it is to write what you mean in a manner that conforms to others expectations?

  • NHS blunders killed my Mother but she was very old

    things are very different when you find out that NHS blunders have destroyed a young persons future

  • Ignoring dodgy Thyroid Function tests in an 85yrold led to their death


    Failing to tell a young  head injury patient to totally rest mind and body

    GOSH telling same patient it was merely post concussion and would go in 2 yrs

    The list goes on but essentially theres been a series of NHS blunders and failure to diagnose correctly added on to 6 to 8 month waiting lists to get to the few neurologists who know how to diagnose correctly and formulate a treatment plan .

    I can only express immense sympathy for every single person suffering chronic pain especially if their NHS treatment has been less than excellent

    If the pain specialists stopped to think a little more how their patients are suffering maybe solutions would be found

    Whatever the reasons precious years of life are and have been ruined

  • Thanks Dello1

    I doubt Daniel has had to spend solid 7 weeks with non stop hellish migraine in a darkened room unable to even read a book and certainly not watch TV  and also be vomiting so badly that 3 times you have had to be admitted and put on a drip for 3 days and each time its taken the hospital 6 or 8 hours to even put you on the drip ......she is not on one single painkiller because they fear of creating medication oversuse headache it could be several months of this before the migraine breaks and meanwhile you still suffer "a man with a pickaxe stabbing your head at point of impact " 100times a day

    Living hell is best description for this kids suffering and its an 18month wait for the lidocaine infusions that might just stop the stabbing pains guarantees

  • nearly all of the posts on this subject.wont put my tuppence worth on it. In one year alone I had almost 130 hospital appts in 2014 for various problems.and had 12 ops in two years.i just want to say the NHS do a fantastic job with the constraints they have.not saying it's all been plain sailing had to change my he made me feel like a hypercondriact. Looking at his watch telling me I taking up to much time.thankfully I changed gp and now have a fantastic one.all I'm trying to say is please don't knock the NHS,we are so lucky to have it. Like everything it has its problems.dont know where I would have been without it.but do hope you get some sort of closure to your frustrations 

  • Sorry you are all going through this. You are correct but fight for her. Nobody should be going through this at such a young age. I have 2 autistic boys and you have to put on your boxing gloves at times to get what you want. They want you to give up and walk away as it saves money. Have you been in touch with any support groups for people suffering neurological injuries? If you go to the GP and say its urgent, he/she should be able to express that in a referal letter to the hospital. Also she can get disability benefits/PIP. They refuse 90 per cent of them but you appeal, then fight it. You are telling the truth and she is in pain so can't live a normal life at present. You have to get as much support and people around you all that are on your side.

  • update on my long suffering Grandaughter

    Finally got to see the worlds top headache guy after a 6 month wait on NHS

    His diagnosis firmly remains Post Traumatic chronic migraine

    80% recover in 5 years

    Sadly looks more and more like she is the 20% who do not and with that goes her life

    She went through total and utter hell last week enduring 5 days of intravenous DHE because

    that was the most likely thing " to turn this ship around " on the NHS it would have been an 8 month wait till next February ....sadly despite that hell probably worse than chemo theres no improvement

    so she had it done privately and the bill has gone to the people who caused the accident just hoping against hope they finally start to cough up because right now she is not fit to work let alone go back to school to complete her IB and gain her place at Oxford

    Gutted would not begin to describe how we all feel for her and the appalling waste of such a truly talented girl through one persons utter careless actions no doubt because it saved a few pennies

    I still hold the view that when it comes to Neurology the NHS is utterly hopeless and really does not care

    Now starts the battle with DWP and Atos to get some benefits

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