ARGH! the waiting is so stressful!

[mel1981]

Been wanting to post on here for a while but never know what to write.
DS3 is currently waiting for diagnosis's for multiple problems and the waiting is really stressing me out.
Consultant originally thought it was a craniostynostis syndrome (previously posted on SN about it) but that has been found to be negative after a CT scan and had a couple of other negative results/blood tests.
But sight and hearing tests were also inconclusive and waiting retests.
I just want some answers....I dont want to be one of those parents who dont find out a diagnosis
I know im being impatient, but patience really isnt a strong point & just needed to get it out.

I've found waiting horrendously frustrating and that was just for the professionals to confirm what I already knew.

I can't begin to imagine what you're going through and I think the systems ought to change. There is too much waiting between appointments and for people to make these crucial decisions which change the course of people's lives so dramatically.

I really hope you get some answers very soon. You must feel unbelievably frustrated!

Thank you Al1son.
I agree they definately should sort out the waiting time between appointments.
We were first seen for DS4's eye sight back in November and they still havent confirmed if theres any problems or not(-possible nerve damage).
I understand sometimes they need a bit of time like my ds's case - developemental delay & especially when its a baby to allow for natural improvement/changes but still...
We were first referred to consultant in February and he immediately ran tests & referred for scans etc.

I totally feel your pain, have been undergoing tests etc for DD since April 09, still no diagnosis, some nasty things have been ruled out but still don't know what's going on (although she has a lot of ASD traits so that will be part of it).

I don't think parents mind so much if there is a reason to wait like we need to see how the child develops etc.

Most of us can understand that these people aren't magicians.

The problem comes when you get to that horrible position when you know that they have the information or the ability to get it quickly and easily and the systems drags its feet for weeks or months (or even years!) because "that's how it works". There seems to be little understanding at times of how much effect this 'limbo' has on patients and their families. The additional unnecessary stress can make an already difficult way of life far worse.

Somebody should do a study on it then it could be factored into the decision making processes more.

Alison, your point is well made. I think most people recognise that waiting - either for results or treatment - is pretty stressful. The long term effects of stress on illness etc are pretty well established at an epidemiological level. However, I'm not sure it's quite as easy to fix as you imply ...

Most of the people you're talking about probably don't have easy access to the information - my lay perspective is that it's very difficult to get information to flow freely in the NHS. The NHS has spent billions trying to put a more efficient system into place which (if it worked) would have allowed information to flow more freely across different bits of the NHS. It doesn't work and the government is not going to throw more money at it.

Even if the health professionals can find informamtion immediately, they've got to ignore other patients to deal with your case more quickly. Those people end up with longer delays, etc etc. We could solve this by throwing money at the problem (which the labour party did with the arbitrary 18 week target) but only at the cost of other people's health. Somewhere, a balance has to be found between helping different people.

Personally, I don't think enough is made of the stresses attached to diagnosis and treatment but this is partly to do with what we (don't) know. At the moment, we've got pretty anecdotal evidece of harm for waiting on one side and more scientific evidence for benefits for treatments on the other. It's probably inevitable that reducing waits within the system isn't a massive priority.

How do we change this? Not quickly, I'm afraid. If the problem is - as I suspect - that the evidence isn't there, then we need the evidence. That takes a long time, including finiding people who view it as enough of a problem to throw money at the research. I wouldn't see NICE, for example, being interested in this given some of the other big evidence gaps out there.

I don't necessarily think it matters whether it's the parent, patient or another member of the family. We've still got a bad grasp of thing sort of thing ... in some cases (e.g. palliative care) I think we often make the mistake of thinking the person getting "treated" is the person who benefits most.

Early intervention has a value yes. In some cases the value of preventing delay will be bigger than some other treatments but is always likely to be less than in others (e.g. some types of cancer).

As a guess, the evidence that's out there will not help us talk about the value of a month's quicker diagnosis to the longer term prognosis. So, we'd probably struggle to say that there's any great value to the child. (There's bigger harms in missed diagnoses rather than delays, and I think there'll be more evidence on this.) Unless you could show that a month makes all the difference, you're left with the value to the parent - which is also easier to capture.

The thing is we are talking about more than a month or so.

We have gone from professional to professional in our area, shouting the difficulties from the rooftops, changed schools, got private reports ... and over a period of 2 years our son's ability to cope has disintegrated to the extent that he has been unable to go to school for long periods, and even now is only attending a couple of hours a day when he can. That is the saddest thing.

Meanwhile we discover there is NO established pathway to diagnosis in our area (ASC/AS in DS's case)- so now we know why we have been sent from person to person - no one was commissioned to assess in the first place.

The toll on our family has been immense and to be honest DH and I are barely holding it together at times.

The hardest thing is the chicken and egg - no diagnosis no treatment. I have been asked why we want a diagnosis so much, and keep having to reply that if any of the difficulties had been addressed in any way I would not be nearly so bothered about it, but they haven't and look where we have ended up.

I realise this is a time of tight budgets we are facing and all have to accept some cutbacks - but time delay can be expensive too. Look what we are costing now - statutory assessment in process, probable (fingers crossed) statement, medication for son to sleep, counselling for me ....

Al1son sums it up talking of the 'limbo' - we just want to know what this thing we are facing as a family is called, so we can get on with coming to terms with it, accepting it, and making the best of all our lives. Hanging on with it isn't it, maybe it won't be, maybe it is just us, maybe he really will grow out of it, and getting in a muddle over how to handle it all is just plain painful.

I don't know how it can be measured or whether anyone would ever try to - I suppose that is why these things are 'hidden' disabilities. No one is going to be held to account over such delays and the knock-on affects can just be put down to individuals not managing to cope.

I better stop ranting now and get on with some of the work I have been missing recently!

It's not a matter of a month quicker..I can HONESTLY say that I have been pushed to the point of almost breaking down COMPLETELY due to the drawn out and frankly useless diagnostic process, it has been like torture, and if DD had been just diagnosed a year ago it would have been better for us all, for her and for myself.

Do you know Fanjo, you have said what I wrote in an overly long ramble in a few succinct words - and I am supposed to be an editor

I am too stressed to type much!

Sorry, didn't mean to add to the stress.

If we're talking years, then it's clearly a long time and covers much larger developmental periods - which increases the impact on a kid greatly. The emphasis for finding evidence then starts heading back towards children.

As I've said, I am sympathetic but can't imagine that things will change quickly. So much of the decision making ends up ignoring everyone other than the "patient". There are reasons for this in some cases - mostly so that socially isolated people don't end up ignored.