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I owe the NHS my life

RamRam Posts: 35Member Pioneering
edited July 2018 in Guest blogs

Here Ruth writes of her experiences of relying on the NHS.

I have to admit that this is a particularly emotional piece of writing for me because I owe the NHS my life. Not just in a ‘it pushed me out of the path of a speeding bus’ kind of a way (although before I had even put in an appearance, and shortly after, it did do that) but, rather like the kind of non-judgemental friend that will hold your hair back while you vomit, it has always turned up, in moments of crisis, just when I most needed it most. And more importantly, its mere existence tells me, loudly, every day, that I am an asset to the world, not a disappointing, uninsurable, collection of pre-existing conditions; that it absolutely does not matter if I am six, or ninety-six, earning, or not, whether my body is a temple, or more of a ruin, that I will, most of the time, not have to bankrupt myself in order to get the treatment that I need. That is a remarkable thing. It should be celebrated and cherished and protected.

My CP and Perthes have meant that the NHS is as much a part of my life as family, school and the supermarket and I think my experiences speak of the yin yang that is our health care system: in the same day, it can make you want to cheer out loud and hug people, and then make you despair. I think that they show the importance of feeling listened to, that the system works best when the expertise of patients, users, stakeholders, whatever we want to call ourselves is valued and utilised.

headshot of ruth with brown curly hair tied back and in a black top laughing and smiling at camera

Aged three, on a ward that was at least a decade away from unrestricted visiting, I was not yet brave enough to explain that I wanted to finish my favourite fish fingers, but that I absolutely had to go to the loo. I returned to find dinner cleared away. Thirty years later, the understanding nurse who conspired with my husband so that I could have a sneaky Fillet of Fish, the only thing I fancied a couple of days post hip-replacement. The 1976 Brownie Christmas party that I almost missed because of unreliable hospital transport and my consultant who, seeing me still in the waiting-room, took a detour, on his way home to his own family, so that I made it in time. Waiting for a chilly three hours in my garden, for an ambulance to take me, and my fractured ‘good leg’ to A&E and then to a ward where I was met with more kindness, knowledge and reassurance than I can really put into words. Being ‘told off’ because I asked for a second pillow (needed because I could not lie down without it), and a wonderful GP who recognises that I want, and need, to be involved in every decision about my health.

The fish finger incident taught me that, when it came to the NHS, I needed to speak up for myself and I have been doing it ever since. I am lucky that I can and that, for me, it was a pre-school lesson. I worry about those who can’t, or think they shouldn’t and I think that four and a half decades should have made more of a positive difference to how defeated some consultations make me feel. The ones where it seems that my notes have not been read, my answers to questions are not listened to and where it is made very clear that someone else knows what is best.

I find myself fascinated by GPs Behind Closed Doors and 24 Hours in A and E because they have made me realise that my frequent flyer status means that I often present myself differently to other users. From the age of six, I knew that my hip replacement was inevitable. My resignation to its necessity was misinterpreted as naivety, even stupidity, for a frustratingly long time until I met the right consultant, the one who could see that I understood what I was getting myself into and was making an educated choice. I hate the ‘hit or miss’ nature of the whole thing, of always having to wonder if I am in for a battle or if, instead, I will be appreciated for being informed and opinionated. Too much seems to depend on coming across the right person or, more worryingly, knowing how, and where, to find them.

As a teacher, I know something of what it is like to do a job that is unpredictable, under-funded and, often, under-appreciated but I reckon that it is nothing compared to working for the NHS in 2018. Those who choose to do it are astounding and their commitment, in the face of so many frustrations, is miraculous. Even as I am thinking this, I find myself wishing that the many layers of bureaucracy could melt away and that decisions could more often be left to those who have genuine experience and expertise, whether they be professionals or patients. I wish that our health care system could be as good at enabling those with chronic conditions to live their lives as it is at saving them.

I am fortunate enough to have parents who remember a pre-1948 Britain, and friends in the U.S. whose far from comprehensive health insurance costs more, every month, than my mortgage. They remind me that, despite its many imperfections, the NHS is a wonderful thing for any nation to have imagined, and built. I may be scared that, one day, I will find myself too incapacitated to fight for the treatment that I need. I worry that the system will become overwhelmed by the ever-increasing demands placed upon it, but I am far more fearful of a future without it. So I do want to raise a glass, and to say what, in truth, is a vastly inadequate thank you to everyone who cares enough to keep it afloat.

What do you think of Ruth's story? Share your own experiences in the comments below!

Replies

  • Chloe_ScopeChloe_Scope Posts: 6,521Administrator Scope community team
    Thank you Ruth! I really enjoyed this piece and can definitely relate to it! I particular like the line: 
    I wish that our health care system could be as good at enabling those with chronic conditions to live their lives as it is at saving them.
    Yet understand the vast challenges and do throughly appreciate the work that everyone in the NHS does! I hope they continue to pick up the pieces of life for many more years to come :smile:
    Chloe
    Online Community Officer
  • RamRam Posts: 35Member Pioneering
    Thanks for reading Chloe. It's great to know that you relate to what I said. 
  • TopkittenTopkitten Posts: 1,031Member Pioneering
    I am glad to hear that some are treated well because my personal experiences are pretty much diametrically opposite. I do stand up for myself and sometimes a little too firmly but even that shouldn't account for poor support.

    I am a big supporter though of the 111 service, ambulance crews and the Police in their role of health protection but that's about it. Sure, I have waited up to 8 hours for an ambulance to arrive when I have been classified as non-urgent and up to 4 hours for Hospital Transport to get me home but these are not the fault of the service but of the multitude of idiots demanding ambulances for problems doctors, walk-in-centres and even (in some cases) common sense treatment at home without any health professional. Likewise some of the delays of 111 for the same reasons but at least these services contact you to let you know you haven't been forgotten. The Pain Clinic forgot me for over a year whilst supposedly treating me and then lied on the forms to cover it up despite over a dozen calls from me trying to get help. I have also been refused necessary surgery because a doctor covered up his boss' mistake when put on the list for the wrong surgery. Without Hospital Transport I could never attend hospital appointments or get treatment.

    As far as programs and documentaries are concerned....

    24 hours in A&E cherry pick from the few "real" cases and show almost no full departments with beds lined up in the hall with ambulance crews unable to book the people in. Common practice over night in every hospital in East Anglia. Not a realistic show imo.

    The same applies to GP's behind closed doors. My surgery has recently sent me a letter stating 20 conditions they will no longer provide prescriptions for, such as Paracetamol for headaches. Not complicated cases but simple headaches. What a waste of GP's time!

    I have found "The force: Essex" and "In the ambulance" realistic and accurate even though they do play down the alcohol related cases a little. One episode of the ambulance show showed a "blue light" ambulance (category 1) arriving to find the child standing hand-in-hand with mum on the kerb outside their block of flats. The reported breathing problems turned out to be something that the child had pushed up her nose and which she sneezed out before they could even get her onto the ambulance. However, their charter states that a Cat. 1 call means the pair had to be taken to A&E. What a waste of resources!

    Most realistic of all is "999 What's your emergency" which really shows just why such wastes occur. Even showing a call from a drunk man wanting an ambulance sent out to take him home because he was lost and couldn't find or afford a taxi.

    I repeat though, it is great to see that some really do get the help they need.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • nicebootsniceboots Posts: 195Member Pioneering
    Hi what a great article! I too have cp, and definitely owe a lot to the NHS! My mobility for the most part... thanks to all the hard work of the NHS staff that treated me and encouraged me to work with them to manage my condition. I also have the pleasure of working for the NHS and it really is a pleasure... although highly stressful at times! I really hope in years to come that the NHS can carry on its fantastic work.
  • RamRam Posts: 35Member Pioneering
    Thanks niceboots, I'm glad you enjoyed reading. It's definitely the people who work for the NHS who are its greatest asset I think, particularly those who really understand what it is like to rely on it.
  • littleruthie123littleruthie123 Posts: 460Member Pioneering
    Great well written article .I owe my life too the amazing breast care clinic at Nottingham theve been fantastic can't praise them enough!!.if only every other section was. Pain clinic is terrible in comparison and seems too be getting worse .a shame .I'm addicted to gps online .they all get support ecgs mental health the lot .it's not like that everywere at all !
  • RamRam Posts: 35Member Pioneering
    Thanks for reading. I think, like you, many people have very positive experiences and some frustrating ones.
  • paullus62paullus62 Posts: 1Member Listener
    I  too owe my life to  the doctors and nursing team in the ICY in the Ulster.
    Without their care and quick response to a Sepsis infection I would not be writing this today.
  • AlexAlex Posts: 1,325Scope Team Scope community team
    Great to hear @paullus62, thanks for sharing - and welcome to the community!  :)
  • WaylayWaylay Posts: 888Member Pioneering
  • crippscripps Posts: 411Member Pioneering
    Lovely to read all the different experiences of the NHS and how they have help people through difficult times. I myself do owe my life to them because at Christmas i had multiple organ failure, my consultants really did a smashing job of putting me back together. Although they saved my life at the time i find now its very difficult to make them understand the chronic pain I’m in and the difficulties I’m having just surviving each day. From Christmas I’ve had multiple operations and still waiting on one or two in the pipe line but it’s very frustrating when I’m telling them my problems and there still not listening, is it me or are they court up in this very big circle ⭕️ of having NO money and only doing the very bear minimum to keep people ticking over. I love the NHS but i wish they would treat people with genuine care needs very differently from the time wasters that have nothing better to do with there lives. I do understand the position these doctors are in but didn’t they take an oaf to help people in need. NC
  • SethLaaSethLaa Posts: 115Member Courageous
    Very well written Ram, good luck,god bless and best wishes to you xxx
  • RamRam Posts: 35Member Pioneering
    Thanks SethLaa, glad you enjoyed it.

  • davetdavet Posts: 68Member Courageous
    whilst it is always good to read  accounts such as this, the title of my account would be "how the NHS ruined my life", my story begins on 19th August 2012 when I was in a meeting at work, I had stood up to get a coffee, and remained stood whilst I listened to the MD deliver a progress report, and I suddenly passed out, collapsing to the floor. An ambulance was called and I was taken to the local A&E, On arrival Iwas placed on the bed and waited about half an hour for the doctor to attend, who carried out a number of tests such as temperature, shining a light in my eyes and taking blood,he later reappeared to announce that I was suffering with a chest infection, I was given a selection of tablets including antibiotics and sent on my way, I began taking these tablets as advised,yet for a week I constantly felt very ill and week, and had to go to bed most days where I slept for hours, my wife who worked for the NHS as a blood science pathologist, felt something was not right and rang my GP for advice, after explaining the situation he merely saidoften antibiotics can make you feel ill when you start taking them, but I should persevere as the A&E would know what they were doing. I therefore continued with them and a week later on 29th I felt well enough to return to work which I did, However after being back for about 2 hours, I had lost the use of my left arm and hand completely, I therefore went to my GP and was seen on an emergency appointment. After examining me he told me that he thought I had suffered a stroke and he called an ambulance, and I was taken again to the local A&E, this time under lights and siren. during the drive there I was wondering how I could have suffered a stroke, I was only 55, and had spent my life being very active, I had played rugby league at amatuer premier level for a number of years, I played football, tennis and cricket, I ran  most days and had completed 3 marathons previously with very good times, I was in the gym on average twice a week, I watched what I ate,and hardly drank at all. But on arrival at the A&E where I was seen instantly, it was confirmed that I had suffered a stroke, I was instantly admitted to the stroke ward, my wife was told that I had suffered a large stroke and in all probability I would suffer another during the night which could prove fatal, this however was obviously not the case, and the following day I underwent a number of tests including a CT scan on my brain,As I was out of it completely, the stroke doctor  talked to my wife who was very surprised when the doctor asked her about 'my stroke' a week ago, my wife told the doctor I did not have a stroke a week ago and explained my 'chest infection', during this conversation the doctor told my wife that the scan had shown previous scarring on my brain of about a week old, suggesting that I had suffered a stroke on 19th and not a chest infection. Following my discharge some time afterwards, I was unable to use my left arm and hand, and struggled to walk with a walking stick despite physio. I was unable to return to work and consequently lost my job, and whilst waiting for the DWP to sort out benefits I lost what little savings we had, shortly afterwards, we lost our house as we could not keep up mortgage payments, my marriage was the next to go. after leaving the hospital, my wife, due to her job was able to access my medical records and found thayt what the doctor had said was true, and also found that the antibiotics I was given on 19th carried a side effect of the possibility to cause a stroke, further, if my chest infection had been diagnosed correctly as a stroke, I would have been given a clot busting medication which would have prevented my stroke on 29th which left me disabled. I obviously wrote to the health authority to complain, yet despite all the foregoing, they wrote back to deny any responsibility at all, I advised them that I intended to take it further and would contact a solicitor, they wrote back to say that I was within my rights to do so but failed to tell me that there was a 3 year legal limit for claims such as this, and by the time I had engaged a solicitor and they had put the case together ,this 3 year limit was up, so I was unable to pursue it through the courts, leaving me badly disabled, having lost everything and now having to live on pathetic amounts of benefit which I have had to strongly fight for every step of the way, I often wish that I had suffered a fatal stroke on the night of 29th as i no longer have a life merely an existance thanks to our glorious NHS
  • TopkittenTopkitten Posts: 1,031Member Pioneering
    To @davet and @cripps.

    Unfortunately you fall into the category that most people do, that of ascribing respect to doctors without questioning them sufficiently. I do not say you are at fault or to be blamed in any way as it is, after all, the way 99% of the population treat doctors. Perhaps in the past it was deserved but today it is not and everyone should question doctors decisions and research presented solutions as much as possible.

    As an example of this I would like to share this story....

    Around 3 years ago I tried to help someone, a young lady of 30 who suffered Cerebral Palsy and Epileptic attacks from birth. Also, due to the CP her mental age was really only about 15. I was able to drive despite my disability and the young lady obviously could not even though in many ways she was healthier than I. And so on a purely friendship basis I began to see the young lady and take her out for coffee or spend time at each others home 2 or 3 times a week to allow her to get out and about and help her overcome her MH issues that were caused by being stuck at home so much. For the first few months things were going well but then, on a visit to her GP, he decided that her medication for Epilepsy was very old and there was a much better and newer drug she should be on to deal with the Epilepsy. Consequently she began taking the medication in the firm belief that he understood her situation. Almost immediately she began having absences lasting up to a couple of minutes during which she would appear to be normal but couldn't respond to anything and would not remember anything afterwards either. As we only met for a couple of hours most of the time her explanation of only 2 or 3 a day seemed reasonable until we arranged to go out one day and spend most of the day together about a month after she started taking the new medication. That day she had no fewer than 12 absence attacks and most likely more and, in the late evening, she finally had a big full-on Epileptic attack, with convulsions and everything usually associated, in my car and it terrified me being the first time I had seen it. Once I got her home I called 111 for her even though she was unhappy about it and they sent an ambulance out. I contacted her parents and locked up for her and followed her to hospital in my car. Once I got there it took me a while to find her as I had to use my wheelchair and find somewhere to park etc., etc. I spent 2 hours at her bedside and she spent most of that time having a go at me and yet had 3 more absences. Each time I called for a nurse and each time they were dismissive as the attacks had worn off due to their tardy responses. When she had a 4th one I would no longer be kept quiet called for a doctor, argued with the nurses and, half an hour later, finally got to talk to a doctor. I had a blazing row with both him and my friend insisting (or trying to) that they change her medication back. He refused point blank and stated it should be increased and ofc my friend had another go at me for arguing with him. When her parents finally arrived I explained everything and left as she was unhappy with me for the fuss I had caused. Her parents weren't particularly happy with me as I had upset her so I left. I didn't see her for almost a couple of weeks as I waited until she contacted me rather than cause her further distress.

    I continued trying to help her for another 6 months during which time the medication was raised and lowered a number of times and I found the increasing full-on Epileptic attacks more and more difficult to cope with. I acted as a perfect gentleman and friend every time which was very new to her having been rather badly treated in her friendships and relationships and consequently she began to attach more to things than could ever be the case. I think she thought that someone who treated her so nicely must be in love and, most likely, it was the closest to that she had ever experienced. With increasing regularity she began hinting we should be more and, when I flat-out refused reacted much as I should have expected insisting on me helping her with Internet Dating. I grudgingly agreed trying to preserve the friendship but left her with a list of the do's and don'ts with the 2 most important in capitals. Do not bring a man home or give him her address for a while and to meet in public places. Of course I guess I should have done better because the first man she met was at her home and he took advantage of her. She blamed me for it ofc and expected me to help her go to see her GP to get the morning after pill and could not understand why I would not do so. I knew exactly how the reception staff and perhaps even the doctor would presume to see things and therefore could not do so. For the next few months we communicated only by phone and I had to put up with a number of tirades. I wouldn't contact her parents to explain as it wasn't my place but hoped they understood. Things were also complicated with more and more frequent and longer visits to hospital. Finally she stopped contacting me for which I was grateful except for one last telephone call around 2 years after this started. In that call she apologised for her behaviour and also for the constant complaints she made to me every time we discussed medication. She, with her parents help, had researched the new drug and discovered that her reaction was well documented. She explained that finally she and her parents had confronted the doctor insisting she went back on the old medication. Under protest he reluctantly agreed and, prior to the call, she had no fits nor absences for 2 months and I heard later they did not return. Still though I declined to get back into physical contact as I did not wish to go through what she would see as "getting back together".

    Perhaps if I had been family I could have prevented over 18 months of her GP following the script of how to use the new medication and saved her 2 years of hell plus ofc her losing at least another year of growing up as had so often been the case in the past.

    Respect is earned not given and it is about time doctors understood this and treated others with the respect they expect from them. From very early on during my illness I have questioned their decisions and researched their "cures", not catching all of their mistakes but most. Now though I find it almost impossible to make much progress as I am officially a "lost cause" and get very little, if any, support. I do try to work with them but the first part of that is that they have to listen and accept that generally I do know what I am talking about but in 13 years I have really found only 1 prepared to do so.

    I am sorry for those that suffer badly due to the NHS "standard diagnosis and treatment" methods but it is possible to avoid some of them. The trouble is that sometimes, like @davet has described, by the time you realise there could be a problem it is already too late.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
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