My trust in professionals and the 'system' is disappearing fast

[claw2]

Please tell me some stories of competent professionals you have countered?

From a visit to my GP, after waiting an hour for our appointment, where I asked that ds be prescribed 'sugar free iron medicine' and i double checked it was sugar free and also some vitamins to be the told the iron medication contains vitamins as well. I also double checked this with him too. To be handed syrup iron medication containing not a trace of vitamins in the chemist.

To SALT and school saying they have provided a service to ds, when I know for a fact they haven't and when asked repeatedly for copies and evidence, been ignored.

To Social Services, over riding medical professionals and doing what the hell they want. Again, any formal complaints totally ignored.

Previously OT, no assessments, no therapy, no reports. Who then try to write a report a year later just so they can discharge.

Previous Paed's, being pushed from pillar to post, never seeing the same one twice.

Continence assessments, attending appointment, after appointment providing info and that's it, doing exactly the same thing in 6 months time.

Im just sitting here thinking what a total waste of money and everyones time. Moan over with!

[AgnesDiPesto]

Its for this reason I think they have vastly underestimated popularity of direct payments when they come as no parent would pay for services like this. We have had 2 supportive State professionals the EP and social worker. And even EP sat on fence in fear of his job at tribunal. But everyone I have paid privately to see has been 100 times better. Partly because if the service is crap you won't go back and partly because those who want to practice with integrity have to leave and go solo to do it. Hopefully indi school will restore some faith.

[Pixel]

Our OT people rarely get in touch with us but I have to say if you contact them for help with anything specific they are straight on to it and very helpful and friendly. They do actually do things they promise but only if you ask first iyswim. They have been great at supplying us with things like Crelling harnesses and weighted blankets.

[ilikemysleep]

Agnes, glad your ep was supportive, I like to think I have integrity even though I am not private :-) the opinion within the profession is that it is the capacity to make huge amounts of money that tempts many to go private, just like the private / nhs doctors. Though I am sure you are right in some cases and certainly that as the direct customer and with fewer customers to attend to, the service may well be much better. Which is a shame.

There are lots of good people out there, claw, but the systems they work in too often let them down.

[ilikemysleep]

Stories of competent professionals.... My gp referred to autism team. Ds diagnosed through a series of appointments meeting NICE standards within 5 months. Invited to parents group. Discharged, but case reopened within 6 months, focus on communication. Clin psych referred on to speech therapist, took about 2 months to get to see her. SALT and clin psych jointly shared their assessments and concluded comorbid mutism, generated plan. Plan taken into school (again, took about 2 months). SALT and clin psych and school and us reviewing progress 6 monthly, the SALT and clin psych have arranged early review at end of first half term of secondary school. Had recent meeting with secondary school, senco has now allocated tutor group as promised, put him in class with friends as promised, and we have had a sneak preview of school 1:1 before official year 7 visits. DS also invited to attend transition group for kids with communication difficulties for 1 week of Summer hols, which will include further assessments and generation of pupil profile and meeting in secondary school early next term.

My general impression is, very supportive but a bit slow because of too many other cases. They know what they are doing, definitely....

Pm if you want to know where I live....

[inappropriatelyemployed]

Ilikemysleep - are you an EP? Do people know that? Presumably they do if you work and live in the same area. Do you think that alters the quality of service you get?

There is nothing wrong with going into business for yourself because you can make more money. That doesn't preclude you providing independent and honest services.

You say yourself that it is the system that people work in that is to blame. So it seems perfectly reasonable to want to be out of that.

Integrity and following corporate policy is a difficult dynamic to unpick. EPs for example aren't lawyers, they don't know the case law on the Education Act but they do know LA policy. It might say 'you don't need a statement unless you are x years behind' etc etc. This might sound perfectly reasonable and, given resources, acceptable. It is however unlawful. So where does this leave integrity if you follow policy?

Equally, most LA EPs refuse to quantify and specify despite SEN COP. Why. Because LAs say not to. Again, unlawful.

For those working in the NHS, how often do they remind themselves of their clinical and ethical and legal responsibilities towards the patient - duties under the DPA, under common law confidentiality, under their own professional guidelines - when they attend meetings before Tribunal to go through the case against the parent or share information without consent?

If LA/NHS employees refrained from the unlawful and carefree exchange between themselves and their block contracted NHS colleagues of personal information without consent, with the sole intent of defeating parental claims, the system would grind to halt. That rests on personal integrity and not an autonomous 'system'.

Yes, the system stinks but it is made up of people and if more of them did what they were supposed to and refused to do what they weren't supposed to, the 'system' would miraculously improve.

[StarlightMcKenzie]

Claw I reckon you're just coming down from the adrenaline because the end is in sight. Hold on. This has to be ridden through too......

From someone who knows............... xxx

[StarlightMcKenzie]

'There are lots of good people out there, claw, but the systems they work in too often let them down.'

But what is a system, if not a hierarchy of individuals who are working in a certain way, to a certain standard they themselves input into?

'The system' is not autonomous of the people who work within it and blaming the 'system' imo is only the right of the service users, not those within who have some capacity to change it.

[StarlightMcKenzie]

x posted IE.

Think I was saying what she was saying.

I'm sick to the back teeth of 'The Panel' 'The LA', 'The SEN Team', 'The Professionals', 'The Autism Team' followed by 'says/does/advises'.

Somewhere in that lot there are INDIVIDUAL who ought to have the integrity to be named and hold themselves to account.

What the frig is 'A Panel'. I was told so many times that 'The Panel' had said various things. When I was asked for individual names of this so called Panel I was told that they don't keep records of the people who were making whatever judgement/decision that day and that I only need to know that it is made up of 'A EP, A SENCO, A HT and A SEN Administrator'.

Bloody cowards!

[ilikemysleep]

Inappropriately, I think it puts the wind up the school that I am an ep. On the other hand they have never offered to pay for the school ep to see him (live in a traded ep service area) so they haven't pullled all the stops out. I know the nhs stuff is standard, friends kids who have diagnoses have also been invited to the post diagnosis group, the secondary transition group, etc.

I never said there was anything wrong with going private in order to make more money. I have been tempted on occasion myself. I don't think that every single ep who has any integrity goes into private practice, or that all eps in private practice are there because they felt their integrity was threatened in an LA, that's all. No doubt that is the case for some. For others, they couldn't get a LA job ( esp recently qualified eps, lots in private practice cos no jobs out there at present) or wanted to work 2 days a week or wanted to be their own boss or wanted more money or whatever. All perfectly valid reasons, but it's not as straightforward as saying LA eps corrupt, private eps integrity. That's all I was saying.

Claw asked for examples of competent professionals so I gave her my experience, which has been, apart from very reactionary primary school, pretty positive. I still have a very disabled son. Does being an ep render my every comment questionable? If so, I should ship out of here, I can't handle the constant assumption that I am here under questionable motives.

[ilikemysleep]

Starlight, I do think that 's unfair. As a ground level worker you simply don't have the power to change things as simply as that. I have no say in the number of schools I am allocated, the number of children it is considered to have on one person's workload at one time. In this economic climate all services are very squeezed and working under enormous pressure. Either I continue as a LA EP with a heavy workload which means families wait longer than I would like to see me, or I leave, my post is frozen as no recruitment taking place, and the few LA EPS left get stretched even thinner and privide an even poorer service. If I stay then I can and will see any child and any parent regardless of ability to pay (not suggesting that many of you haven't made great sacrifices to pay for private assessments, but there are many people who either aren't clued up enough to know they can get private assessments or could never ever affiord one). It really isn't as simple as saying that if you work in the system you have no right to be dissatisfied with it. It really isn't.

[ilikemysleep]

Considered acceptable to have on one person's workload

[claw2]

Ilikemysleep, funnily enough I have encountered one 'good' professional, he was a paed attached to the CDC who dxed ds. After spending years seeing different community paeds and being told my son didn't have ASD, he literally knew within about 15 minutes of meeting ds for the first time, that he did have ASD.

After spending 3 years seeing paeds and them just sending me another appointment in 6 months time. He referred to the CDC dx team and ds had a dx within 4 months. He also wrote to OT and told her to do her job properly and supply him with a report. He actually phoned me to say how disgusted he was with the OT service etc and told me that moving borough was not a reason to discharge ds.

I often wonder what the difference between this paed was and all the other paeds/professionals we had seen previously. Why could he spot something in 15 minutes, that they hadn't managed to spot in 3 years. Why would he tell the OT to do her job properly, why would he tell me that she couldn't discharge and stand up against other professionals.

He went into private practice about 3 months after!

[StarlightMcKenzie]

I'm not saying that you have no right to be dissatisfied with a system you are a part of, but to not recognise you are a part of that system and blame it to distance yourself from accountability to your clients is something I simply cannot agree is reasonable.

There are some professionals that I know of (who sadly have never even met my ds) who have made huge sacrifices and taken humungous risks with their careers, and personally to challenge the system and make things better for the children on the receiving end. Knowing of them and about them is why I have any faith left in humanity.

Are you like them? Should you have to be?

I don't know. I don't know if it reasonable to expect you to be.

I worked in LAs for 16 years in total. 10 years directly and 6 as a consultant. Those 6 years (when every minute of my time had to be accounted for and billed to somewhere) showed me that things were really not being done as effectively or as efficiently as they could. However it was only when I became a service user that I realised quite HOW ineffective and pointless the work, though it felt important as a native really was.

It's fine to be dissatisfied. But I really don't think it is fine to be dissatisfied and do nothing but shrug (not saying YOU do, but I know that plenty DO). Start walking out of meetings that are pointless to go and see a child. Don't have TACs for the sole purpose of having a TAC ticked off. Find more efficient ways of working (i.e. offer more TA/parent/class teacher training in identification of need and interventions so you don't have to be everywhere at once). Create and hand out basic assessments that parents can administer themselves and then use as a home-curriculum.

All I ever wanted was to know what my ds' difficulties were and what I could do about it. A basic assessment and book list through the post would have got me off of the EP's case and given me something more productive to do than phone their office every day and listen to the on-hold music.

[MumuDeLulu]

To quote (misquote?) star from another thread:
All I ask of professionals now is that they don't lie to me

To me, this is the line in the sand separating the 'bad guys' from the good but failing, and massively over-stretched professionals who are doing their best in a shockingly bad service.

And to quote (misquote?) IE's Orwell reference from yet another thread: in times of universal deceit, telling the truth becomes a revolutionary act.

[bochead]

Village witch doctors used to have just ONE golden rule - first do no harm

"All that evil needs to prevail is for good men to stand by and do nothing"
imho far too many "good" professionals stand by and do nothing.

DS has seen some FANTASTIC professionals - in my neck of the woods though they don't stay in post long, pastures greener, (or at least less corrupt) beckon all too often.

That means the lies, excuses and teflon shoulders are the order of most days.

My 8 year old KNOWS he is NOT equal to his able-bodied and NT peers, he knows he is treated with disdain and contempt by those PAID to help him. He knows I cannot protect him and that his status is that of a second class citizen. He's ASD not daft!

For my part, I'm at the point where my "give a damn" has broken & I just want those with no interest in helping my child to get the heck outta my way so I can get on with healing the damage they cause/d to him.

Blaming the "system" only takes you so far in the public sector before you have to be willing to stand up and be counted. On the other hand many in the private sector are just as bad, seeing children only as profitable commodities. Knowledge is perverted, hidden, and jealously guarded rather than freely shared.

[MumuDeLulu]

claw, our chemist (small family business, not a chain) will usually phone the GP and tactfully point out their error negotiate a new prescription if this type of thing happens.

[AgnesDiPesto]

Sorry not saying no eps have integrity! What i was trying to say is often system forces many who are not prepared to compromise their principles or standards to leave. I know good autism outreach teachers who have bullied out of the service for not being prepared to provide a lesser service eg reduce from weekly home visits to termly nursery ones. I had a private midwife who told a similar tale the only way for her to give the service she wanted was to go independent and she lost not made money by doing that. the system can be stacked against you if you work in a culture of awful standards sometimes you do have to admit defeat and leave for your own sanity. Sadly where I live the culture in sen is pretty toxic and professionals who have left have told me that. What I have experienced is so much worse than I could ever have imagined. I literally feel like I took a wrong turn and ended up in some underworld ghetto of provision. I know its not this bad everywhere but in some areas it is really really bad. I would not have believed vulnerable children are treated so badly in this country if i had not seen it with my own eyes.

[MumuDeLulu]

I'm not excusing failures to comply with professional standards. At the same time, as service users, we can make it easier for professionals to follow them. For example, by reminding them of those standards in writing, and openly holding them to account. It makes it harder for a boss to over-rule their (say) EP's insistence on specifying and quantifying, after an email in which the parent quotes the relevant national guidance.

It's very difficult (not impossible) for LA staff to challenge their superiors, since much of the problem originates in policies and priorities which start at or near the top. And the guidance for staff who have concerns doesn't offer any easy answers. Look at this, for example.

[MumuDeLulu]

Agnes, it probably is . Almost everywhere, anyway.

[inappropriatelyemployed]

Vey insightful posts.

Star - very well said. If there was more planning, more measurable output and less defensive practice, things would improve. They may also improve if those employed by the LA understood their duties under the Education and Equality Acts independently of LA 'policy'. It should and must inform advice at every level.

Bochead - 'knowledge if peverted hidden and jealously guarded'. Ain't that the truth. Too many people wanting a piece of the action and a slice of the cash.

You know what? We try and campaign. We try and raise issues BUT if one LA employee in every LA told it as it really is - anonymously - it would carry MUCH more weight than 1000 parents.

Why not write an article about the pressures of the system in a way which won't identify you? If you recognise complaints about unlawful information sharing write something anonymously to help us lobby.

There are a million ways to 'whistleblow' without identifying yourself.

[StarlightMcKenzie]

I think whilstleblowing doesn't happen much for a variety of reasons.

I was bullied terribly at school. I simply wasn't safe in some lessons where the teacher didn't have good control and so had to play truant.

I met some of my bullies later on in life. They had absolutely NO idea quite how devastating their effect had been on me and remembered very little wheras I could remember much more of the hurtful self-esteem eroding behaviour. They also were utterly convinced that they were 'just having a laugh'.

Their whole world wasn't bullying me, but my whole world was being bullied iyswim.

[StarlightMcKenzie]

Sorry. So I meant to say that I think that those doing the worst either intentionally or as a bystander probably don't give it an awful lot of thought and have other things to think about during their working day.

But also, within the teaching profession as a whole there has been cultivated a true disdain for parents. This is I believe as a consequence of ever-eroding confidence levels of teachers by having gov, media continually blaming them for all of society's ills and constant criticism. One of the only ways of holding onto a shred of confidence and self-belief in themselves as 'professionals' is to hold one over on 'parents' in a kind of 'leave it to us - shoo shoo, just because you went to school doesn't mean you know anything about how to teach' kind of way.

Add to this the general working culture in LAs. Many are Led by weak Managers who recruit non-bright underlings who aren't capable of challenging them. There are a reasonable percentage of staff at the bottom end of the salary scale who feel that 20 days sick per year is an entitlement. There are also some hard and late working individuals that carry their whole lazy team without promotion for years and basically prevent their department from going under whilst those around them network with the councillors for promotions.

That's been my experience anyhow. I don't see much room for initiating change. A third of the team is too lazy, a third are too empire building to give a shit about anyone but themselves and don't even understand the policies that need changing, and the final 3rd too put upon.

[inappropriatelyemployed]

Yes. I agree. But I think if you do care and you want things to change you have to BE THE CHANGE YOU WANT TO SEE and stop complaining about 'the system'

[bochead]

I honestly think many in the public sector are going to be genuinely horrified by the stampede to direct payments from parents in the very near future.

I also believe that many honestly think that "he doesn't seem to like me very much cos he didn't make eye contact" levels of knowledge (true quote after being asked to assess my pre-diagnosis ASD son by my LA EP) are still acceptable in an age where parents have access to the internet. This means that parents can obtain up to date books etc from the like of Amazon, find out about and attend conferences and training, and TALK to each other.

Slowly, slowly catch a monkey stylee the internet means that parents can for the first time gain access to information that just ten years ago would have remained forever hidden from them. The KEY technique used by all the state agencies against parents battling for adequate provision is to make parents feel isolated and as if they are the only ones dealing with a specific issue. Twenty years ago this may have been the case, nowadays parents are able to reach out to each other despite the RL social isolation families with disabilities suffer.

I honestly don't think the "system" is fully aware of all the potential ramifications of this knowledge revolution yet. The growing demands for outcome based practice is probably only the start. In the non-SN world of education there has been an exponential rise in home edders in recent years, as state education is no longer seen as the only delivery mechanism by more and more parents. I see the clamour for direct payments & accountability overtaking any ability of any LA to control in the next decade. "Panels" will be asked for the first time to justify their existence as few PARENTS wish to fund them.