NHS and CAMHS won't help our autistic son
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- Äas pĆidĂĄn 6. 03. 2017
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A few weeks ago I talked about how the NHS was failing my family. This is part 2 to that video - we're still no closer to the medication our autistic son needs, and now CAMHS are talking about admitting him to hospital to force him to eat!
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I also have an autistic child trapped in these god awful systems for health and education set up to fail them.
I spend hours calling and sitting in meetings too.
It's maddening, just outright discrimination and abuse of our kids and it's happening up and down the country.
Keep going, wishing you the best of luck. you are wonderful parents xx
CAMHS is so awful. I could write an essay about how they've failed me and others. They should not be in charge with children whatsoever
Take them elsewhere then
@@pt4005 that's the only NHS certified support in the UK..
This just breaks my heart. You're not over reacting at all.
CAHMS is awful tbh. I went into hospital in January because of a series of events and shiz, and I had to wait until July to get an appointment even though I was ' a serious case '
+TransitioningGhoul thatâs awful
lollujo Vlogs yeah it sucks :/ hopefully it'll improve soon
I had to wait 3 years and I have autism
@@jofro2148 That's appalling. How dare they make you wait that long.
Kev.
This is the first ever vlog I've seen of yours, can I just say my heart genuinely goes out to you and your son, along with your partner. I wish there was something I could do to help you matey, really I do. My experience of the whole NHS is don't sit back and think they are doing something for you, get in their faces, remind them every day that you're there. The people that are the NHS are great people, it's the system not the individuals. Keep chin up, keep going.
I agree so much we went to the hospital and then they discharged my sister straight away an hour after she was on a feeding tube
I haven't dealt with autism, however I have full sole custody of my daughter and the system failed her massively. They had passed the blame to the police at the fact I wasn't informed as to what had gone on and the police blamed them. 3 years later, they're still doing this. All we are is a statistic - if we allow it - but like you, I won't. I think it's an absolute joke the way they're treating your family. I'd be and have been a lot more angry than you came across at the way the system in the UK fails children. Massive admiration for you and your family: -)
Kev,
I have family that work for a different county council, specifically within the social services area. I've forwarded the video on to them who in turn will post this on their facebook accounts in the hope that they can find someone who can offer some good advice about your circumstances.
I really hope this situation is solved or at least on the right track soon! Can't imagine what you and Anna are going through.
+KangaR FM cheers, that's awesome
Re watching the old vlogs from start to finish
Two weeks for a prescription is disgraceful this is the 21st century.
I had an appointment booked in january to talk about medication for my anxiety. The doctor took the day off on that day and they still haven't rearranged the appointment nearly two months later despite us calling them time and time again. I've had to drop out of college because of my anxiety. I can't even interview because of my anxiety. I need medication so much but they just seem like it doesn't matter at all
+ffsvilhena it seems to be a regular story all over the country.
shocking once again feel for you all Kev. I had scans on my back 4 week's ago after losing partial use of my arm, I saw a doctor who then told me they won't be operating despite my nerves being squeezed caused constant pain and someone would contact me around medication. I am still waiting and no idea who to see as my go can't prescribe what I need. NHS is a joke and no signs of improvement all can hope is that when the new law passes when you actually have to live here for X amount of time and main residence in the UK, waiting times and support may improve.
Hi, I was wondering whether you have tried writing to your local Clinical Commissioning Group (CCG)?
I got referred to camhs for adhd and I waited seven months for them to tell me that they weren't going to do anything. I'm 17 so it won't be long until I can't use them so their trying to avoid treating me. It's not the NHS or camhs that's the problem it's the funding that they get.
You are fighting for your family Kev and nothing wrong with that. Having worked as a chef in a school for kids with Autism i do have to say the one I worked at was briliant, families came all the time and took the kids out and some went home for holidays and weekends away. The staff and managent did amazing work and the improvementyou saw in the kids was brilliant. I know you dont want sproglet to go into a place like this but they are not all bad.
Unfortunately welcome to the NHS. It is going to be the same for your family as it is for many others across the country. Perhaps a press release maybe? These institutions hate their reputation being slandered and as much as I hate to say it, they may even react to such. So perhaps a local radio or newspaper?
Same way here in the US, designed to fail and its never in the best interest in the child as they claim.
Kev you and your family have my full support mate.
I have had Cerebral Palsy Since I was born 22 years ago, nine years ago I had an operation to loosen the tendons in my legs which resulted in me completely losing feeling in my right foot for two years, during this time the foot twisted outwards, and my toes have all curled in. The hospital knew there was a problem as soon as they removed the plasters I had on for three weeks and simply said. 'You need to stop that leg turning out' when we enquired about how to do this they didn't seem to have any meaningful ideas, and when my Auntie who is a nurse suggested inflatable splints (which she still uses today) the physios were I live said 'oh we don't use them any more and we can't help you, but you do really need to stop that leg turning out. The upshot is I now have a permanently out of position foot which I still can't feel 100% and probably never will form an operation which turned out to be pointless anyway (they said I'd be able to get a special wheelchair which has a standing mode meaning I could do more things myself as I got older, what they didn't tell me or my parents is that they standing mode has absolutely no practical use whatsoever and amounts to nothing more than a combined wheelchair and standing frame.
The problem is there is no meaningful communication between the agencies and the people that matter and as a result it's those people that suffer, , because people with power don't care .Keep fighting.
Kev. You seem to have fewer and fewer options. I would suggest that you take all your evidence to your local MPs open surgery. If nothing else you could also write to your local paper as the story may have some traction within this area.
Is there a way to raise an official complaint to the NHS? Hard as it isn't a financial implication where you could be referred to the ombudsmen but there must be procedure in place. Tried contacting walkers to see if they have any older stock you can buy or if they can do a few boxes in old packaging?
Any advice for how you got through it
Came online today to try and find advice about a very similar situation Iâm having with my daughter. She has not been officially diagnosed with anything as yet. Iâve been begging and fighting since 2015. She was discharged twice until she had basically a breakdown in January this year. We are being passed about on a daily basis between every agency and hospital in our area. They are failing her so much and there basically is no help and they donât no what to do so ignoring the situation. I could go on all day there service is useless and not effective in really anything. Iâm going to keep fighting as we have no other choice but why should parents who are already be stretched to the limit have to fight for help
+Kandis Holland yeah, thatâs all you can do - just keep fighting. It took us nearly 5 years to start getting some help for Andy, but it was worth the fight
lollujo Vlogs back at the psychiatrist this morning so we will see. My daughter has been so ill and I started really kicking off last week because they were doing nothing. Good luck really hope you get the support your family deserves. We have the eating issues as well to deal with on top of everything else. She didnât eat for 24 days over 2 separate episodes but they werenât concerned. Really feel for your son the system just doesnât work they pass the children off to other people and you end up getting no where
Its amazing to me that your dealings with the NHS system seems identical to mine when mine isn't as serious. ive been in the battle to get things done and have a rare ankle injury whats going to require a few operations to make pain free and get me walking again the process has been over 4 years now and every step seems to be the same, as you have to chase everything down or nothing would happen and when you do they just bounce you around from one department to another, all they do is try get you lost in the system i have been told twice from two different GPs that i have been a victim of the system and its caused things to be lost, stop and slow down as they had said for most processes should of happened months sooner. I was also told if i was over 60 they wouldn't try fix anything they would try bounce me around and hope i give up or die before they have to intervene .. Recently trying to find out information on my next operation i was told the lack of urgency is because funding is going to more specialist areas I would of thought autism would be one and I'm shocked there isn't a better response to an even younger person than myself with a much harder battle, the last thing needed is a fight to be treated and thats all it is.. the NHS is broken and we are the ones who need to fix it! Good Luck!
I would have gone private. I work in this area itâs overloaded and overstretched. There are 100âs of children just like yours who need the same care on waiting lists
hello. i just found your channel and subscribed. i really relate as my son is autistic and know what you mean about packets. we did get a dietician but she discharged him as they said they couldn't help
+June Ingram that's what we expected, but this one was really helpful
It's the Tories, not the NHS.
Shaytards Fun it's the Tories purposefully strangling the NHS. Every shift in every hospital is understaffed and it's getting worse because of the changes they're making with nurses and junior doctors. There's just no funding for anything.
9:15 is very scary and is real indeed!
persistence is key.... you have breaks and lunchtime phone them keep on at them and hopefully it will work for you....it did for us in Lincolnshire...with cams the doctors said our daughter didn't need help. but me and the wife knew she did it took 3 months of constant pressure but we got the help she needed eventually.. she`s a different child now..... its not autism she had but a mental trauma we knew like you do they need help....keep on at them and keep your chin up the fight is long but you know its worth it....
So bad the situation
I'm sorry to make this about me but I feel compelled to express this in solidarity with what you're going through, I'm an orphan who also lives with Asperger's and the various mental problems that come with it and I've been banging my head against the NHS for almost 4 years now to no avail, they have repeatedly tried to apply inappropriate and irrelevant treatment to my case because it is the cheaper and most time efficient method of approach and every time it inevitably fails to have long lasting effects on my circumstances I am penalised for it and made to shoulder the blame, being on the spectrum makes it very difficult to stand up for myself, the NHS are in my opinion a joke, you took the words right out of my mouth when you mention the failing bureaucracy of it all
Meant to flag this when you first mentioned it Kev. What are the chances of you having any/finding any of the old bags of Walkers from when he still ate them? That way could you just keep refilling the same bag for him - obviously they would be pre-opened which he may not like either.
+John Molloy we tried that trick when Pepsi Max changed their cans. He's wise to it, and unless he opens them himself he wonders what's going on
Could you just get a little glue and re-glue the top of the bag each time?
I feel your frustration
maybe you could try putting new crisps in an old packet ?
+grogspen he's wise to tricks like that unfortunately
Have you tried putting the crisps in a plate and not giving him the packet
Sounds to me like you hit the nail on the head. I wish I could say you were over reacting but I do not believe that you are. Often times they would rather lock away out of view the people that have been failed by the system the most.
+Lollujo Could you contact your local MP?
+LordWaspy I could, but I don't imagine it'll do any good. I don't rate him.
A heart breaking story Kev. I feel for you and your family. I'm not sure how to help, it looks like you're trying everything possible, its the people "in power" that need to act. You say the people are being nice, maybe its time to get forceful and not accept a nice story/promise, demand action. Complaints get noticed, even the threat of a complaint can get results (or has done in my experience, start to get managers names and complain if things aren't happening. I hope things start moving quickly for you.
PS I work in the Pharmaceutical industry, Pharmacists in Chemists have some power and can get results. Chase the Chemist if the script is supposed to be getting sent there, "Unlicensed Specials" are worth a lot of money to a Chemist, putting the pressure on them WILL get results I can assure you, they won't wont to lose your custom (Independent Pharmacists are in my experience much more willing to go the extra mile for a patient - they can and will chase GPs for scripts).
Not sure if it's been said before Kev Can't you find any old Crisp bag he has had before and put the new crisps inside the bag for a short term fix
+Carl Ayres nope, he has to open them himself...
Certainly not being unreasonable, if it were my daughter I don't know what I'd do,
Welcome to the British Government Kev! I wish you all the best of luck. I am sorry I have no practical advice for you
0:27 dog with a cigar
It's not unrealistic to expect a basic level of care and competency from the institution that is entirely there to protect you and your family's health and wellbeing. In all honesty we should expect much more and unfortunately what I've personally found is that unless something is overtly a black and white situation as you've mentioned it is a massive issue. Anything outside the box frightens the living daylights out of those who govern how physicians can't treat their patients.
Aside from that issue have you sought any help from charities designed to help with these issues perhaps? They may be more beneficial than the regular NHS because I would imagine they are not bound by the same laws and principles. If you could get any support through these means surely it would be beneficial.
Aside from these I completely understand how difficult it is to divulge from routine and the norm with autism. I feel for you having to deal with that without any outside support from the institutions in place meant to do this.
Fingers crossed it all works out sooner rather than later.
You right
Are there any charities that can offer help/specialists? Even if it's just finding GPs who specialise in Autism might help as they probably have better contcts. Or putting you into contact with people who have been through this kind of thing before and might have advice.
I feel for you man, I doubt I'd be able to handle it. I guess these videos are kind of cathartic.
Tanesis Rogan in my area there is menphys
I would write an essay on how rubbish and awful cahms is.
does he see a peadiatrician? - i still do and i'm 20 - ok i'm autistic
+aaron hudson he does, but only once a year for a few minutes, they don't know anything about him
guess it is the height and weight your more worried about.
They would most likely tubs feed him
Have you got any of the old bags? Could you empty a new packet into an old bag so that he will eat the crisps
+mattquiney8 he's wise to that trick unfortunately
I hope you find something that works for you. I think you're right about the system, they want the hassle free solution where they can keep everything quiet and out of the way.
I can't even pretend to understand what you're going through with him, but I don't think you sound unreasonable. There's absolutely nothing wrong with expecting the promises made by all these 'professional' people to be delivered. They absolutely should be delivered, not just tell you what you want to hear to make it go away for another week or two.
Watching all of Kevâs vlogs #83
do you have a surestart near you? they will send a family support worker to try and chase services for you
+June Ingram not that I know of. Our social worker tends to do all that.
The nhs isn't good enough personally id get rid of it or restart it. Have u tried a private doctor . My nan is really badly ill she went to hospital with my dad and they sent her home she said no and after 6 hours of arguing they did a check and turned out she had 2 heart attacks in that day .
That is so try
Have you heard of ARFID, I know this is an old video but I would highly recommended that you research it.. Avoidant Restrictive Food Intake Disorder and speak to your dietitian about it..
He doesnât eat because heâs just âfussyâ.. it goes way beyond that and children with ARFID view food differently !
Ive been to chams for behavior related problems they are awful honestly they dont do anything properly
+Simply Lily thatâs a shame - they seem to be doing a good job for Andy, but Iâve heard a few stories about people who donât feel theyâve benefited from them. I think it depends on which doctors you end up seeing there.
lollujo Vlogs they do well in certain cases but in my case they just didnt do it very well and they were just submitting me to other places like horizons
+Simply Lily thatâs a shame. I think they struggle with the tiny budget they have to work with.
lollujo Vlogs possibly
I canât even tell you how much I agree with this, also heads up this is gunna be a long paragraph. So me and my sister both have autism Iâve got extreme anxiety to the point the panic attacks are so bad I pass out or I think Iâm dying plus with that Iâve got depression. But my sister has autism, biopolar, suicidal ideation, psychosis, anxiety and depression. She is extremely mentally ill at the min and cahms have been so bad I canât tell u how angry I am. Sheâs told the mh team that she wants to kill here self and on top of that sheâs had over 50 hospital visits for suicide attempts and has been admited to a psych ward for 5 months but this doesnât matter cahms have said to her that they are sorry to hear this and gives her all these promises which they never keep. My mum was on a meeting and psychiatrist asked cahms for her medical reports ect ect and cahms said âwe didnât feel like we needed to document it because she wasnât a risk to herselfâ Iâm a school psychologist and it doesnât matter if anyone is having a worst or the best day you need to log everything for evidence for things like this meeting, cahms didnât even do that which is so unprofessional and so dangerous because now she canât get enough help. I tried to take my life and cahms said âthink it through before u do anythingâ, Iâm sorry but last time I checked ur supposed to tell me. They r so quick to say âwe are here when u need usâ and âwe r only a phone call awayâ then weâre r u because I donât see u helping me and my sister. The people who r paid to help people like me and my sister canât do there jobs, Iâm an extremely patient person I get there is waiting lists I understand things donât happen over night I know they r over packed I know they havenât got enough money but itâs taking the piss, Kev u shouldnât go through this I shouldnât and if anyoneâs suffering please hang in there when u find the right help u will be happy I promise â€ïž
This still makes me angry đĄ
Have you considered moving house to be nearer a bigger city with more specialist? A bit extreme I know but I'm sure your aware the squeaky wheel gets the grease. So you ain't squeaking badly enough. Mate just take him to the hospital now. They will say he's not below the wait but tell them he's not eating. they have the ability to rush him up the cue to see the dietitian. Have you looked into getting a private dietitian?
+Nicky Wilson moving house isn't really an option because my kids live with us half the time, and that wouldn't work with their schools if we moved away. As for taking to hospital, we're doing everything we can to keep him out of hospital, because once they get him in somewhere I see it being a massive battle to get him out again.
lollujo Vlogs private children's dietitian? Do they do those for autistic kids? My little sis had to see one years ago but she was just a pain and only wanted mcdonalds. Nhs didn't keep her waiting 4 years.
I don't know the current state of UK laws. But (and i'm serious), Cannabis and a transplant of gut microbiome might be able to help your son. The former has helped me with anxiety.
do u need to go to your local hospital cos if not then u should take him to the john radcliffe hospital cos thats where our autistic child goes n we are getting loads of stuff we need.
+Kris Conway we can't even take him to Peterborough hospital despite it being 8 miles away. Because we live in Lincolnshire, we have to take him to Boston or Grantham 30 miles away...
lollujo Vlogs iv just put your video on fb n tagged somebody who has 2 autistic boys she may be able to help. she helps alot of families wuth autistic children. if u dont want me to share video then i apologise now n will remove it from her news feed.
+Kris Conway I'm always happy for it to be shared, cheers.
I got same as problems as you they are useless!!!
the Tories are failing your family Kev :\
Geektzu This is why I want to go into politics #SayNoToTories #VoteSDLP
100th comment
I think your understandable passion from one side has made you extremely cynical to the other side. I am never going to say I am an expert on the health service provided in England, but I will wager that accusing them of being so nefarious as to just have a kid locked up so they don't have to bother helping him cannot be accurate. It reminds me of the quote (paraphrased) never attribute to malice what can more easily be explained by stupidity... it's a bureaucracy and it's dysfunctional, but it simply cannot be as you portrayed it. But if I was a father figure trying to help take care of a son, I wouldn't care for it one bit either
+Stephen Mason I guess we'll find out over the coming months. If he ends up locked away before he's seen the specialists we've been waiting years for, then regardless of the intention of the individuals involved, it's a system designed to achieve that result.
Being part of a similar system as a teacher, I see a workforce full of passionate people who want what's best for every child that passes through, stuck in a system designed deliberately to cause a proportion of them to fail and fall through the cracks. If you go high enough up the chain of command, the people effected aren't seen as people anymore, they're percentages, and I guarantee that somewhere within government there's a figure for an acceptable percentage of autistic kids who end up locked away in homes, and a criteria for what problems those kids have. If he meets the criteria, and they're within their percentage, it's more cost effective to do that, and therefore what's best for him doesn't matter anymore and they go with policy. I regularly see it in education, health will be the same...
lollujo Vlogs this is why I continuously say that healthcare is far too important a thing to be trusted to a government, but there is a vast chasm between saying this system is failing its intended purpose and it's not acceptable... and decrying this system is setup to perform evil