Sensible, yes that was me with the the gob.. now its different and has to be.. It has calmed me down in that way.. Yes my Mrs is a saint and has to deal with him 24/7 its difficult as we had 50 hours a week respite with carers coming in the home, they dont care to be honest its just a wage for them what little they get! So at easter i told them we do not require them and went back to social services and they gave us 5 hours?? a big difference? I told them to keep that, politely!! So time went on with no help, respite or care and they have a duty to look after disabled children the act of 1984.. so i fight on and now they have given us 25 hours a week to date for the last month at Dame Hannah rodgers in ivybridge reluctantly as that is Devon and i live in Plymouth which is in Devon..I have endless rows with them.. but he needs one to one care as he is complex and they are the only ones who can provide this. We have now got a Caseworker from a company helping us at a cost as its seperate from the medical neglect.. so i have to stay calm as the Mrs does all the caring, i have to work and its busy.. so i do all the shouting at the nhs and council.. to be honest its who shouts the loudest.. The Nhs is not all bad..as you say its targets not care now.. i do remember when your mother was ill and you said about the care,, Well we just have to get on with it..
Interesting that you should mention Great Ormand Street hospital. For various reasons I went there a lot when I was a kid, and I have to say, GOSH is a really good hospital and the staff were really friendly (my doctor in particular, Dr. Smith). I mean, it's still a hospital so it still scared me somewhat and even to this day I'm not a big fan of them, but it was as welcoming and as positive an atmosphere as any hospital could possibly be when you're a kid. Plus they had an N64 in one of the waiting rooms. The other hospital where I had my experiences was much less nice, but apparently it's got much better since then. I think one of the royals had her baby there (Zara Phillips possibly). I think by NHS hospital standards, GOSH is pretty exceptional.
I was about 8 at the time and am 64 now. It remains with me even now and I can see the place as if I went there yesterday. Was exceptional, is exceptional and that includes everyone who works there or ever has. The other hospital he was in and where he had his operation was the Royal Marsden. No childrens ward for kids like him and he shared a ward with basically old men and was the only child there. He was 10 and mostly away from his parents. It was so memorable that that is all I remember of the place. There was no hospital in the South West who could do anything at all for him in those days and it cost my parents everything they had to go and visit at weekends. No help from anywhere. It's funny what you remember when writing something like this. Remember British Rail from the good old bad old days. My parents took us to Lancashire for one last time for him to see his grandparents and it was at the urging of a bloke from a local Church who worked on the railway. BR gave my parents free tickets and a private compartment all the way on every train we got on. There was a quick change of trains at one station, think it was Preston. They held the connection for us. Wheeled him over the tracks into the train and got us settled into another private compartment before the driver was allowed to leave. The buffet people supplied free tea and sandwiches all the way and it was exactly the same all the way back again 2 weeks later. Even though it wasn't for me I felt like Royalty. I'm not a religious person at all but have to say the compassion and generosity of some people is overwhelming at times.
With respect Sensible, the problems I'm talking about are not to do with financial targets or anything similar, they were to do with uncaring nurses sitting on their fat ***** nattering at the nurses' station while elderly patients went unattended and a dehydrated 3 year old being left in A&E for 4 hours from 11am to 4pm while the hospital looked for a porter willing to take her up to a ward for treatment. In fact in the latter case, I was called in from work and hard to drive them around to the other side of the hospital myself. Once on the ward, we were installed in a store cupboard (I kid you not, although they did give us 1 chair between the 3 of us) while they tried to decide whether to admit her. It became evident that their greatest concern was not my daughter's health but the fear that she'd vomit in the corridor or in the ward. By about 9pm, I fully understood why people offer violence to NHS staff. At around 10.30 pm, we were told they were unable to make a decision whether to admit her as the samples taken at 12am hadn't been tested and the lab was then closed. Clearly by that time both mother & daughter were exhausted, emotionally & physically, but the only advice we were given was that although after 12 hours they still hadn't decided whether admit her and couldn't offer any treatment unless she was admitted, if we did take her home, it would be at our own risk. We took her home at 11 without any treatment having being offered all day. Luckily, after a night's sleep in her own bed she was much better and maybe we were making an unnecessary fuss. However, it's certainly the case that she was very very ill when we took her to hospital and the hospital staff had no idea at all what was wrong with her and made completely ineffectual attempts to find out, so they can't take comfort from the right outcome occurring by accident. By the way, I forgot to mention my father-in-law who's repeatedly been given drugs to which he's allergic and has received botched NHS laser treatment so that he's almost blind. None of this has any significance compared to your situation Joe and it's an honour to "meet" someone who's dealing with it as bravely & lovingly as you are. But stick it to the ******** for the rest of us. They deserve it.
I understand what is being said about carers.........but to give yourself completely all the time for every patient can be beyond most carers......the emotional entanglement that is required can sap the life out of one who does it week after week as a form of employment.......and to go home still sane probably needs some of them to turn off now and again especially after a long time patient dies........I have to go out soon and haven't time to share with you what my daughter-in -law does as a childrens nurse working for a charity,but I will get back to you on that if I may.
Distant, i have sympathy with you on that, we have not had that experience.. The problem we had was that in his first 3 weeks of life no one listened to my Mrs after constantly telling them he was un well and was not feeding, taking him twice to the devon drs ect and then the rest was what has become now. constant care 24/7 and a battle with the NHS and city council, yes i will keep going at them .. they dread it when i call them as i do not give up.. i am his voice and my Partners. Its not easy but i have no choice but to do it for the family and my son.. There are some good people in the Nhs and council .. but the ones i deal with are terrible . no return calls or we will get back to you.. or best of all we don't work Fridays and then they seem to be on leave .. how much time off do they get? One day the story will be told.. once i get a result.. them i can shame them..
I know you weren't talking about targets as such notdistant but I was making the point that so much these days is exactly that. I think that half the time the only question being asked in their heads is will it meet one and if it won't then how do we get rid of it so it doesn't show up in the stats. That is the target driven culture we have and the person on the end of it comes a poor second a lot of the time. My middle son was ill and we didn't know what was wrong with him at the time and he was admitted. My Mrs spent the night on the ward as he was very young and distressed. He was sick and it was another parent who gave her something to be sick in not a nurse. My wife told me the next day that she only saw a nurse once all night and they spent their time in the office and left the care bit to her. On the other hand when he was very poorly for a couple of month without getting to the bottom of it we had to call our GP out on boxing day. He came without grumble and told us off for leaving it so long. He made the point that for a child he would come out at any time and any day. He was fantastic but very very old school. Some of the nurses on the ward where my mother was were absolutely great and very attentive. A lot of the others hardly spoke English which makes me sound a bit racist I know but it's true. No good for an old woman who could not hear and could see little. I remember telling a doctor that she couldn't hear him and we had to write things down in big letters for her to read it to get her to understand. Guess what, he raised his voice 10 notches as if that made any difference. I said she's deaf doctor and shouting down her ear through a megaphone isn't going to cure her. I made him very embarrassed in front of an entourage of his trainees. They simply don't listen. Carers in the nursing home who left her buzzer on the floor where she couldn't get at it time and time again despite my complaints. Water on a tray she couldn't reach. I went in every day fortunately for her but the ones who seldom saw anyone never got heard. I know it sounds like this is just a complaint thread now Plym but it is the only experiences I have had and some of the supposed "Angels" and carers just don't. This has got nothing to do with being psychologically drained or getting attached to people it is about basic care which, if it was given to a dog, would lead to prosecution. If they cannot handle it then they are in the wrong profession in the first place. Some of the ones I came into contact with were just there for the wage and it was so obvious. You don't even have to like your patients, I didn't like some of my customers either, but that doesn't stop you being professional and doing your job properly. Like all professions though, the good at it and very good at it get let down badly by the other variety and it colours your opinion as it's bound to do. Apart from the Navy medical care I have to say my overall judgement of medical matters and people is not that great.
Plym started some thing here with this thread!! about the NHS!! more talk than off the football... i have said my bit... i will let you all know when i have some news.. may be a while... The book we will write is called Sorry i am late!! as we have diaries all the events... every person who calls for an appointment says " sorry I am late" never on time or early? Must dash as need to have a row with the Council...
I can imagine the health care proffesion must be an incredibly demanding and emotionally draining and as you say, it can sap the life of ut of someone who has been doing it for a long time. Even in Scrubs, there are episodes where the emotionally draining aspect of the medical proffesion is at the forefront and I think despite being a comedy series, it covers that particular aspect well. Yes, that is painfully true in my experience.
I refer people to my middle para above. None of that had anything to do with emotions and everything to do with people simply not doing their basic job properly and in a number of the cases simply because they couldn't be bothered. Loads of things in life are emotionally draining and it isn't an excuse for shoddy work from anyone. I can accept that people in all walks of life make mistakes as nobody on the planet is perfect. I understand that some mistakes are fatal for others and people are human and therefore their mistakes have more severe consequences. But in many cases to repeat and repeat those mistakes is not forgivable and if it is your child, as in the case of notdistant and joe, it is magnified a thousand fold.
As I've said already....I do understand how your views can be coloured by your experiences with carers.......but can I tell you about my daugher-in-law Megan.....ok she doesn't come in the same category as a "carer only"... but I would like to tell you how it can be. Megan is a Great Ormond Street Hospital trained Paediatric Nurse.......they prefer to call them children and teenage Nurses this day and age. When qualified she went to Romania for two years and worked for a charity called "Hospice of Hope" based at Casa Sperantei in Brasov. This was in the early 1990's when the horrors of how abandoned children were locked away in so-called homes with no amenities,health care,education and certainly no love....many could not even speak.....local people had no idea how to work with such abandoned children. The Hospice of Hope provided everything through voluntary donations and the charity shops that they set up in the UK. Megan still has contact,at present through the shoe boxes at Christmas set up and she went out last year with one of the lorries that delivered those presents to the children.....she actually had time to visit the home where she was based....meeting many of the workers and children.......the children would stay in these homes until 17/18 yrs old and then were found work. The Hospice of Hope has expanded and built new homes and also a training school to teach local people to be carers,nurses and doctors to help the thousands of homeless children that do not get placed into families.......some have come to the UK and been adopted. Megan since then as worked for two childrens Hospices......Demelza House and at present The Ellenor Foundation where she is visiting poorly children giving treatment,injections,follow up care for the child and any brothers or sisters and of course the parents until the enivitable happens and the child dies....counselling is part of the job as well. Some of the families become friends still, after the childs death and some get involved with the charity and obviously find a comfort in doing that. One family became Godparents to Megans son when he was born and we see them regularly at family get togethers (birthdays etc). Megan has been too to many funerals of children and it does effect you after a time and it can be hard not to bring the grief home with you to your own family situation.....but at the end of the day there is satisfaction that she has helped families at a great time of need and to count your own blessings.
Sorry but I've only just seen your post about your son and the ensuing problems Joe, I feel really bad for you. I thought you son had been born disabled, I had no idea it was due to neglect or wrongful practice. I feel so sorry you have had all these problems through something that appears to have been preventable. I have the utmost respect for you and your partner and I hope you get the closure and compensation you so need and deserve.
Thanks mrs Lala, he was born perfectly well and was ill but no one listened... now we have this to deal with.. we will not give up on him as he has his own way.. he does react to certain things. its difficult to explain.. but he is loved, cared for as is a joy and good fun in his own way... hope your well.
I already said about Great Ormond Street plymborn and my respect for all of the staff there. But the Megans of this world are not always the normal. For every Megan there are several others who don't come up to scratch. The Megans pay the price for these others who don't give a monkeys. Not everyone is poor as I've also already said as with all walks of life. My experience though is I've encountered more poor than good and it simply shouldn't be that way.
exactly Sensible, i think that is the feeling among most people. most of the Consultants we have dealt with with our son have been great, it was not them who were at fault and our GPs are great, they work with us and go out of their way to help.. Just wish we took him there in the first place. But what is done is done.. Everyone has different experiences with the NHS,
I do remember twenty odd years back not getting a good result from a consultant specialist at St John's Institute of Dermatology which is part of St Thomas' just across the Thames from the Houses of Parliament. I had been suffering for a few years with Industrial Dermatitus cause by me being to casual when degreasing small components with a degreasing agent using a aerosol can,my fault not wearing gloves everytime. I got referred to the BIG dermatitus clinic up at St Thomas'. It was a well known teaching Hospital.so I started visiting a top consultant there,when I walked into his consultation room he had about twenty students there, many from abroad. He examined my hands,which at the time were quite sore,hot, with skin falling off and I needed to keep them covered with gloves which helped to retain the medication that I was continually using. This consultant started talking to his students and allowed them to examine my hands and have a good poke around.....I felt rather like an exhibit and obviously I was just an interesting case for them to learn from. After four weeks of going through this each visit and doing what he suggested and using his recommended creams etc....there was no improvement. His students of course were puzzled that the great man's advice wasn't bringing any results and they were asking him questions why not. Having dismissed his students the consultant said he would speak to his receptionist and then asked if I could go along to see her. This I did and she explained to me that the specialist would prefer that I didn't come back to see him.....I was rather gobbed smacked at the time......but thinking about it later it probably was because the specialist was losing face and was becoming embarrassed in front of his students that he wasn't curing my condition. Eventually my Doctor sent me to see a local consultant....who patch tested me for certain things......the result was the basic aqueous cream I was using had a preservative agent in it that was causing the problem....He recognized that and solved the problem and changed the type of aqueous cream I used....and the other medication then worked. Result..... big consultant got it wrong......small local consultant recognized the problem got it right.....what a shame he wasn't passing on his knowledge to students !!!
I think everyone has a story to tell regarding the NHS, mine is ...... When I was having my son he went into distress so I had an emergency caesarean, the next thing I remember is being in an ambulance and waking up on a life support machine in ICU, when I was finally back at the maternity hospital I was questioned for 10 days as I kept remembering things which I was told I couldn't possibly have known as I wasn't showing any vital signs .... everyday I was asked "has the anaesthetist" been in to see you which they hadn't ..... finally after 10 days the junior doc went through and named the people whose conversations I could clearly remember but shouldn't have as I was showing "no vital signs". Two weeks later I had an appointment with the consultant who was going to explain what went wrong, he informed me though he couldn't as my notes had gone missing ...... I decided not to take things further as both myself and my son had survived .... I often wonder though what did actually happen to me !
Is that how you do your predictions now Gat? Transcendentally whilst sleeping. It explains how you know when to do a treble point week. Not a consolation in any way if you are on the receiving end but...... Everyone in life makes mistakes. That's a fact of life but some people's mistakes have severe consequences for others and sometimes they bury their errors. I accept mistakes can be made and it is only those that have never made one who can judge when they do which is none of us. It's the cover up part that does it though. "I made an error" is not that hard to say and "I'm sorry I did" isn't either. That though isn't my beef with it all. The beef is those who find a job in a caring role and then abysmally fail to care at all. Wanting to do a good job should be the mantle for everyone who works. It was mine even if I sometimes failed in it. The one thing I always prided myself in though was that if I made an error then I held my hand up and admitted it and then did what I could to put it right if it was possible. Not perfect in any way but at least I got the respect of others for doing it. Not quite in the category of pressing the wrong button in a missile room or a medical misjudgement but it's the principle rather than the actual job itself.
