Have we been treated shoddily by the NHS or is this the "norm"? (might be long, apologies)

[WhoeverHeardOfAWormskinRug]

I don't know whether to just "put up and shut up" or complain... but here goes:

My DS1 (12 years old, has Asperger's and ADHD) was re-referred to CAMHS in January 2012, as we were having some issues around behaviour and anxiety. Very long waiting list for services in our area - finally got an appointment through in November 2012.

Given appointment for 10am on a Wednesday early November. We got to the Consultant's at 9.30am and waited. It got to 10.30am and we still hadn't been called in. Eventually, the receptionist approached us and apologetically said that the consultant didn't actually work Wednesdays and our appointment had been made in error.

We saw the consultant the next day instead, and during that appointment DS1 was given ADHD medication to try (we've never tried it before) and the consultant said that we would get another appointment for 6 week's time through the post.

4 weeks passed - and no appointment. We were, by this time, running low on medication and DS1 was starting to show some side effects (low mood, didn't want to "do" anything, not talking - he'd just lost his sparkle).

I called the Consultant's office and was told that they'd "forgotten" to schedule an appointment, and that instead of mid-december, we'd have to wait until 17th January to see the consultant because there were no free appointments. She arranged for a repeat prescripton of his medication and told me that the side effects would wear off.

The side effects did not wear off. In fact on New Year's Day he had a psychotic episode. It was terrifying and we ended up in A&E with him threatening to harm himself among other things.

A&E were brilliant, and I can't fault them - they took the rest of his medication away, and tried their hardest to get hold of DS1's consultant. However she was unavailable. They managed to get him to a calm state, and eventually we came home. I was told to contact the consultant on 2nd January to get him seen as an emergency.

Called Consultant on 2nd January, at 9am as soon as the office opened. Was told she would call me back - but heard nothing. Called again at 3pm, and was told she would call me back. Office shut at 5pm and I had still heard nothing.

10am on 3rd January, the Consultant called me back. She seemed very concerned and agreed that DS1 needed to be seen asap. She said she would call back later that day with an appointment. Heard nothing else.

4th January DS1 was due to go and stay with his grandmother at her house (she has a small farm, and it's good respite for him) and so I decided to let him go stay with her as he was starting to feel a little better and she works with children like him - so would be able to keep him safe.

Heard absolutely nothing from then onwards. DS1 came home and resumed school as normal - medication completely out of his system by then, thankfully.

Went to the scheduled appointment on 17th January. DS1 was prescribed a different type of medication, to help with his anxiety. Obviously I was apprehensive about this - but the Consultand said that she would be in contact weekly - and another appointment is scheduled for the end of Feb.

No weekly phone calls. Nothing. I called on 25th January to request a repeat of his medication - because you have to give at least a week's notice and he is due to run out tomorrow.

Rang Boots on Tuesday to see if the prescription was there - nothing. Rang Consultant, and she hadn't done it yet - despite having over a week's notice. She said it would be in Tuesday night's post.

Called Boots today to see if it's there - nothing. Rang Consultant back - she hasn't got round to it yet. Can I go pick it up today? (£20 taxi fare as it's off the bus route) As it happens, I can't drop everything today and go pick it up. Have changed tomorrow's plans so that I can go get it tomorrow - but considering I gave 14 days notice for it to be posted straight to Boots, I'm not too pleased.

So AIBU to think that this is a pretty rubbish way to treat a patient? Or is this pretty much normal?

I feel as though we have been fobbed off with medication, with little aftercare and no sign of any support. I keep being given excuses about secretary changeovers, Consultants being off and heavy workloads - but surely that's not really my problem or DS1's fault?

I've asked for a complaint form, but will anything be done?

No, YANBU. That's crap.

Unfortunately mental health services have seen one of the biggest cuts within the NHS, and CAMHS have always been notorious for being ''hit or miss'' depending on which area you are under.

Sorry you are dealing with this.

It's crap, which unfortunately has been my experience of hospitals so far both with my treatment and family members. I am envious of people who say they can't fault the staff after a hospital stay

That is horrendous treatment. I'd be fuming that a professional used the word 'forgotten'. I'd complain, big time.

You poor thing! Total nightmare for you!
You write very well, & unlike many posts I read yours to the end!
Send a copy to your local MP
You and your son have been treated shockingly.
You deserve an apology.

It's not just mental health. My son had a potentially life-threatening disease and we had to wait for the test results for three weeks.

However, they were available to our GP four days later (we know this because the receptionist told us but there was only a locum available and he didn't want to interpret the results: a figure, for us). However, none of the specialists team knew how to use the new computer system to tell us what the results said. In the end we had to ring the GP and ask them to fax the results back to the people who'd taken the tests (because they'd lost them) and ask them to call the specialist (while we waited in the consulting room) with the figure.

So, two-and-a-half unnecessary weeks waiting to be told that our son doesn't in fact have this awful disease. Because they don't know how to use the new computer system which has cost all that money.

Same thing when we had blood tests done. Results available, but nobody: nurses, consultants, etc, knows how to get them up on the computer. So we have to ring ourselves and ask them to fax the results over.

FAX!! FFS, this is 2013.

It's a shambles, the whole thing. My sympathies, OP.

Oh, and I haven't even mentioned being prescribed medication that is no longer available in any chemist in the region where we live. We have driven miles trying to get hold of it.

Why can't they use computers? Why aren't they trained to use the new system?

this is why i always go private- so so bloody lucky to have cover through work. There is no excuse for not contacting you as promised in an age of multimedia communication, there is no excuse for neglecting your son, and I am so sorry to read of this.

My aunt waited 4 weeks for results from a biopsy cos the GP was "too busy" to see her. She said "can i assume it is not bad news then if you cant fit me in" "no it could be cancer, we havent had time to read the report" WTF!!!!!

it is too common, and people seem too accepting of this. Make a fuss and ask who the consultant is answerable to, she should not be failing to call or honour emergency care.

contact PALS at the hospital and tell them everything and they will be able to help you, this is unacceptable

Oh Abra1d that's horrendous!

I'm waiting on hold for PALS just now - thank you MsVelvet I'd forgotten all about them!

Complain in writing to the chief exec of the trust. Definitely unacceptable.

Thks, WhoeverHeard. I'm really glad you started this thread (though obviously not that you need to start this thread!).

I almost think NHS patients need account managers, like you have if you are a client at a big media company or PR consultancy. Someone who checks that things have happened: appointments properly set up, prescriptions issued, bloodtests received. That you see all the consultants you need to see.

I suppose ideally a GP would be this person, but that doesn't seem possible.

Absolutely dreadful service, does the hospital have a PALS service you could use?

It does thankfully, I've just spoken with a lady there. I've also just emailed our local MP too. crosses fingers

Now, how would I go about changing DS's consultant? Would I need another referral from the GP?

OP, you have had a shocking time which might well merit legal action! Seriously, his health has been endangered by their negligence, hasn't it? Start talking about lawyering up and I bet they get their skates on for him.

My own experience lately tells me I am expected to be my own 'account manager', make follow up calls daily/weekly, chase letters and appointments myself, check results have gone to all the right people, ensure I repeat salient points of my history again and again despite huge file sitting right on the desk which is clearly not been opened, etc etc.

Good thing I'm not REALLY SICK OR ANYTHING.

Hope everything gets sorted this is bang out of order, once or twice you could forgive, but to have the same thing happen time and time again is unbelievable!

I've worked for CAMHS and you have been treated appallingly. As for changing his consultant - what is she a consultant of? Is it a psychiatrist? If so, I'd fight for some involvement from psychology, not just medication. I'm guessing your ds had recently started secondary school at the time of the original referral? Sounds like some actual support would be useful and I'm sorry you've had the experience that you have.

School may well be able to help with links to CAMHS as well - have you approached them for support?

So glad you complained. In every hospital and healthcare setting there are a load of people who really care about their jobs and want to look after you to the highest standard they can manage. People like this consultant make it really hard for that to happen and the good people get worn down and burnt out and turn into people who are just getting through the shift. The more patients complain the more scrutiny is placed on the doctors and nurses who don't give a monkey's and the easier it becomes for the ones who do care to do things right. Good luck OP, so sorry this is happening to you