NHS treatment

Hi I am new here I share in most parents frustration with certain aspects of the Nhs I guess sometimes I feel like I am banging my head against a brick wall. My son is 12 and for years I have felt I have constantly have to explain my sons autism to people who should have a better understanding and knowledge of why he has meltdowns and doesn’t want to do what they ask of him at times my son has been called uncooperative yes really a child with autism but this is not the worse comment I have ever heard. I attend medical appointments with my son and often I feel what’s the point did it help him no not really, the sad fact is my sister is autistic and in her 30s and really at times I see no change in how autism is treated in today’s society when we are told that the people we place ours child’s care in their hands really don’t have any understanding at all and believe all autistic children are the same and all comply the same, I actually cried today and I am quite a strong person but I really did see the failing of the nhs that I didn’t want to believe was there but it’s not just the nhs it’s all the other interventions the speech therapists the specialist teams and country councils input there is a massive failings in the lack of fully understanding autism and the way it affects the people and families who live day to day with it. I send massive hugs because I feel so passionate about this and hopefully one day things will change I say that with fingers crossed xxxx

Oh, I am sorry to hear that. You are absolutely true, NHS is useless :(. I will tell you a story. Since last two weeks I have been taken to hospital three times because of very fast heart puls (I was in terrible condition, I could not breath, my hands were stiffed, I could not bend my fingers and it lasted for a long time...). Every single time I spent six hours at hospital to hear from the doctors that everything is ok with me, that I probably suffer from anxiety (ironically I am a calm person). For the next few days I stayed in bed at home as I was not able to walk (I could feel pressure on my chest and the heart was still racing). Finally we got a private appointment with a cardiologist which costed us £460 but the doctor helped me a lot by giving pills which made me feel much better. Nobody at hospital thought that my condition was caused by medication I take (I suffer from Hashimoto disease). They knew everything about me as I was asked to answers a million of questions. My husband and I read side effects of the medication I am on and unfortunately I experienced almost all of them. Nobody from hospital told me to stop taking those tablets.. In conclusion, I have never been in such circumstances before and are very unhappy with the service I have been given.. Good thing for me is that I lost four kilos in one week.

AliceS said:

if my son doesn't talk before he is around 6 he probably never will

Doesn't sound helpful, and probably not true, having heard from people who were mute as children. Have you come across PACT and shared attention at all? I know little about it, but the focus seems to be on parents following their child's interest rather than insisting on a particular type of engagement.

Obviously the NHS needs more resources, and in autism particularly.

Hi,

I have a 3 yr old diagnosed with Autism. I am English. I had to wait around 7 months to have my son assessed to get a formal diagnosis and the same time to receive 6, 30min speech and language sessions. The sessions were useless and my son did not improve at all. I'm now back on the waiting list to receive another block of 6 sessions. This is all I have been offered, except for the warning that if my son doesn't talk before he is around 6 he probably never will. What I'm trying to say is that its not because you are an immigrant that the NHS is terrible. Its because it is on its knees and unless you are in a&e it is useless.

I have tried to teach myself to be an Occupational therapist, speech and language therapist, ABA therapist, through the internet, especially youtube.

Good luck with your journey.

There is an argument for that. Personally  I think there should be an incentive for paying for private insurance - after all you're paying to take yourself away from nhs treatment so freeing for someone else.

We pay for basic private insurance but the limitations are crazy - and that costs £85 a month for a family of 4.

Never a truer word spoken Arran. Part of the problem is that no-one is allowed to criticise the "good ole nhs".

Ever tried an official complaint, I have. Flowchart for dealing with any complaint:-

1. Can we deny it or can the complainant not prove it happened? If so deny it otherwise go to 2.

2. Can we blame it on lack of funding? If so blame lack of funding, otherwise go to 3.

3. If all else fails, apologise and say staff will be retained (but nothing will happen and complaint will be closed).

Not talking about who pays for it now but compared to the USA, our NHS provides a 3rd world service at best these days. I think I'm right in saying even those with no medical insurance in the USA get free basic care. I often wonder how that compares to our nhs?

Personally, I think its time to re-jog the NHS. Maybe provide some form of private treatment that you pay insurance for? Otherwise its not going to survive.  Lot of people seem happy to pay for dental insurance on top of nhs treatment so why not.

Because if it was a terminal illness people would care.Autism isn't terminal or catching so it's more ignored and not given the money due to the prevention side.The NHS in my opinion should be abolished then people could access cheaper services paid for with insurance and emergencies in a fund

NAS36646 said:

I fight for better life for my child and NHS specialists say that they cannot help me because of long cues or lack of government funding.. Does it mean that this country leaves us with no choice?

The answer is yes. The NHS was next to useless for me both before and after finding out about AS.

The problem is that the NHS has become one step away from a national religion with the public expecting that they provide every medical service imaginable. In reality the NHS is only really interesting in conditions that are life threatening and 'bread and butter' medical services.

It is debatable whether the NHS should expand into newer developments in medicine - and that includes AS - or whether they should strive to offer better quality in existing traditional medical services.

Something that has caused consternation is that approximately 25% of the NHS budget goes on the over 65s and it has reached a point where it could be argued that the NHS is transferring wealth from (often poorer) younger working people to (often better off) retired people. More cynically, it could be argued that the NHS is chucking good money after bad by squandering it on people close to the end of their lives whilst only providing crumbs to children's services. This is further complicated by the argument that people who have worked hard and paid taxes over their life should be entitled to better services than somebody who (or their parents) haven't.

NAS36646 said:

I fight for better life for my child and NHS specialists say that they cannot help me because of long cues or lack of government funding.. Does it mean that this country leaves us with no choice?

Thank you. I will keep on trying.. I found a club that runs Saturday sessions for ASD children in my area but this is not free of charge (£300 per term..).

Thank you for support and kind words. I have been to my local CAB and asked for help in terms of EHCP but they did not know what it is and even were not able to spell the abbreviation correctly. They started looking for some information about it on the Internet and were asking me a lot of questions to find out what it is. Honestly, I wasted my time there.. 

There is are quite a lot of resources dedicated to children, far more than with adults. I attend an autism center periodically and there is a lot of support for children. I think that once you are in the loop things will be more intensive. There isn't a cure for ASD but there is help. I cannot add much more to the advice given by Endymion except to second the fact that being an immigrant doesn't mean that anyone will withold help for your child or begrudge them getting it. Also the Autistic community seems pretty inclusive, I live in a large city and the Autism center I attend is very, very inclusive. I'm a minority ASD person and I've had no problems with any bias. It may take a little time to get in but once you are in you should get support. All the best.

Hello, I'm sorry that you are facing such an anxious time.

I have been on this forum about 3 months now and regularly hear from parents all over the UK who are frustrated with the services provided for their children, many of whom wait years to obtain an official diagnosis in some parts of the UK. I can understand why you might begin to believe that, in your own case, this long period without support and guidance is related to your immigration status but please be assured that it is not. Many parents are facing the same frustrations. 

It tends to be the case that people who are better informed of their rights and who fight for those rights are the ones who have more success navigating the system. To that end, it would make sense to arm yourself with as much information as possible so that you know exactly what your (and your son's) rights are.

Have you tried phoning the NAS helpline? Or one of the other autism helplines, perhaps one based near where you live? They should be able to advise you of the interventions your son can access at his age and they may be able to suggest organisations in your area that can help and support you to fight for these things.

The Citizens Advice Bureau (or CAB) should also be able to offer you support and guidance and can direct you to other organisations. 

This NAS website also has lots of information pages on things such as local parent support groups, just search it to see what is available in your area. I think it would be of enormous help for you to meet other parents in your area, not least because you can gain knowledge and support from other parents but also you will get a clearer idea of the difficulties other parents face. Not everyone in the UK is "fed up with immigrants" and I hope you do find the support you deserve.