Yes, I agree with Londonbound, I’m still on the same page myself with my son.
The Nursing and Therapies Directorate have been delaying and obstructing the complaints I have already had to make, about services my son has not been receiving. I have outstanding matters that haven’t yet been dealt with. Some nearly a year old and other complaints, many years old.
And some that have never been dealt with decades ago.
When chasing these matters up with the complaints manager, I have found myself ignored and then delayed from getting a response for a further 12 days. I shouldn’t have had to chase these up. Not when the complaints were already in the system.
When I did get the latest response, it consisted of continuing to ignore and then making the suggestion that the nurse had been in ‘regular’ contact and if I had further concerns to ‘let her know’ so she could log them.
The fact that the nurse has been in contact just 3 times since she was allocated and only in the last 3 weeks, to me, that doesn’t really add up to ‘regular’ contact.
It’s hardly been any regular contact until 3 weeks ago, and I had to instigate that contact, in the first place. What her contact with me, has to do with my previous complaints that weren’t addressed before this nurse came into the picture, I really don’t know.
All I know is, delaying tactics are in place and are being used, by this particular complaints manager, who has obviously been told to delay and ignore. It hasn’t been very helpful indeed. If my complaints had been dealt with, then maybe my son wouldn’t be suffering from uncontrolled epilepsy and having a terrible quality of life because of it.
I would have thought that the nursing therapies directorate, would have been interested in resolving issues, with my son’s health. Why they have been so dismissive just really proves a wish, for the continuation, of the very same problems. Something I have tried to avoid, but haven’t been able to, and that is due to the manner the whole thing is being handled, and that is via the ignoring method.
I’m not even sure, complaints regarding the inactivity of consultants should have been sent, in this direction to be resolved by the nursing thrapies directorate and that is perhaps why these serious matters, are totally being disregarded, and constantly overlooked.
I have brought the matter up, to the nurse recently, who’s had 3 phone contacts with me. While she has verbally acknowledged the matter, and noted where I’m coming from, not much seriousness has come out as an outcome, so far, and it seems that I’m wasting my time even mentioning anything to her.
The nurse should have some influence, but it’s just not the case or not a lot. Not compared to over-riding a consultant who is determined to take the haughty stance of delay and ignoring, at the same time, while my son gets no positive treatment( or any review of his medications). Allocated consultants of this kind are taking advantage of the ‘referral’ route and it’s known extreme delay.
It is ‘the lazy route’ which then allows a consultant to ignore what is going on now, whilst endlessly waiting for a referral to another specialist, which can not take place because of the presentation of my son’s complex medical problems and disabilities.
3 and a half years, is an awfully long time to be waiting for the matter to be properly looked into. 15 years is an awfully long time to have been waiting for a referral in the first place. One that’s been delayed, on a lifetime basis, and it still ongoing for my son at 34 and a half.
Of course, it’s not acceptable.
It’s not acceptable, on so many levels, and more especially on the level of a poor ‘quality of life’ caused through the unreasonably long delays and the ideas of ignoring in-between.
It wouldn’t be so bad if this wasn’t affecting every aspect of my son’s life, but it is and there is still a total disregard being shown and acted upon.
I had asked, over a long period of time, for a total change in the area team division, as they call it, for my son. In the hope, he’d get seen quickly and sorted out, and so I didn’t have to rely on ‘luck’ in getting through the day.
That hasn’t happened, as ‘war’ was created, many decades ago, regarding the ‘not listening’ brigade and the perpetual ignoring of what I had to say, and then the result of the ‘leaving the massive problem with me, to cope with’.
It’s not supposed to be that way, but clearly that element is still prevalent, in terms of the here and now.
It is destructive, in the way of stabilising my son. It appears that it is chosen to ignore the level of intensity, and indeed the situation completely. Very much a backward move towards assisting my son. One that’s been in action for a number of decades.
Change is needed, for the sake of my son who’s suffering so badly.
What I don’t need, is a barrage of ‘bandwagon’ jumping professionals, who are also using the situation of their making, to their advantage and not to his.
This often repeats itself, in the form of ‘stupid questions’ mainly at meetings. Where professionals ask stupid questions pretending they have no idea of the intensity of the care needs of my son. Normally this type of questioning is for one purpose only and that is to cut care and avoid allocations.
It also causes anguish, worry, and uncertainty, which can’t be resolved easily, and has created the fear of being left in an unmanageable situation. That fear has proved to be warranted, in the past. With actions taken, regardless of what has been said.
Actions taken to ignore to leave my son, in a position of extreme distress during seizure activity, that is so gross that one day it could kill him.
And it’s not just his distress as it’s mine also. Mine in the way of having to witness my own son’s destruction through neglect by the medical professionals. It is harrowing and grossly upsetting, also in the knowledge of realising I can not do a thing about it.
I have recently asked his so-called ‘new’ consultant allocation for immediate help…to find myself remaining completely and totally ignored.