The Herd immune.

[Maine]

There appears to be a type of ‘herd immunity’ mentality amongst staff, working with people with a learning disability. As a team of professionals, they believe 1 module fits all. I use the words ‘herd immunity’ to mean a group of professionals who aren’t apt for any changes. Especially towards the manner, they run their services. In saying that, people with learning disabilities are not the only ones affected by a lack of movement of services.

The module they apply consists of the same set plan for all. Neurology, psychiatry, psychology, and L.D. Nurse. With the occasional epilepsy nurse, and speech therapist. The latter two hardly ever spend much time on a client’s case and it is always time-limited services. There appears to be nothing else, in the equation of any other options available, for the differing health needs of clients.

For people with a learning disability or their family, not receiving the correct treatment can have devastating results. The way these professionals work is made to be entirely problematic. It often, continues with the same theme, throughout a lifetime. It has been this way for my son.

It is profoundly damaging for services to be so rigid in their outlook of services for clients. Nothing ever changes. I much liken the way these services are presenting, as being ‘a merry-go-round’. Should you wish to get off it, you will find you can not do that with any kind of ease. It will be made as difficult as is possible and the very same aim of stagnant input, will be forced.

‘Herd immune’ professionals, are resistant to any change whatsoever. This includes the way services are delivered. They are not open to any criticism when a service is not working in the interests of the individual needs of a client. This is normally a point where ‘the ignoring method’ is created as a barrier and the ‘herd’ then stick together to form this barrier. Whether that is right or wrong.

In many cases, it is wrong. It has been wrong in my son’s case. I could if I so wished, expose exactly what they are currently ignoring. If I choose to do this, on the internet, then everybody would realize why I am complaining about the lack of his treatment, and why I am writing like this.

By rights, they should be named and shamed and exposed for the ill-treatment, by lack of clinical intervention, in my son’s case. They should be made to respond as to why they are leaving my son, in this situation, and forced to explain why they haven’t rectified this situation long ago.

Big mistakes have been made, and plenty of lies written his files. None of it will ever cover-up, what has along the way happened. They have had many chances to rectify this. Instead of doing this, they are currently using ‘herd immunity’ to continue a very poor show of solidarity. All in the worst possible scandal.

I would like to believe, they aren’t using cruelty, to conduct an awful service. Whilst in the same respect, knowing fully, it couldn’t be classified as anything else. The lack of consideration is certainly something they should reflect upon. It’s obviously apparent it is happening. It is absolute. There is no question about it.

These are professionals, who once used their brain cells to qualify for their employment, but now having gained their positions are using dormant ‘pens’ in order to push the spate of endless, behavioural charts which in turn also come under the criteria of epilepsy charts and then they do absolutely nothing with them.

If that isn’t bad enough, there is a constant barrage of extreme delay and excuses for non-treatment. None of which bear any logic other than, a refusal to deal with anything properly. This matters, when the end result is severe distress of a client. Like my son, who has complex disabilities, which are off-loaded to a parent. Regardless of any consequences to either client or parent carer.

There seems to be zilch responsibility from the medical profession to acknowledge, that they are responsible when serious matters have been brought to their attention. They have a duty of care, to address this within a reasonable time scale. Yet they aren’t doing any such thing but reverting to previous failed methods. This is not a time for plowing back over on old soil. Whilst the ‘herd’ stick to their own fields, religiously and unbendingly.

I don’t consider 34 years plus to be ‘a reasonable time scale’ either. The ‘stop and start’ routine has been prevalent the whole time. Then it is taken back to start all over again. Always at my son’s detriment. Only this time, it can’t wait any longer,

He has long ago awaited his turn. Now it’s essential and he can no longer be left in the ‘waiting zone’.

[Cloudygal]

Maine

What is your son currently waiting for is it an assessment at a hospital?

Is he living with you full time at the moment without any access to services?

I agree regarding the services, by the way

My son accessed several day services.. all of them poor..either not enough staff, not enough training , staff with no common sense, staff lacking intelligence, services that degraded my son, perhaps not intentionally but they did its just the way they are set up

Sub-standard sums it up.

What are your long term plans Maine with your son?

[Maine]

Hiya Cloudygal, I hope you're keeping well.

I have been fighting to get my son's health treatment for many years. He is waiting for neurology to act and they think a go slow with EEG's is the answer before they do anything else (All this has been done before and many times). The rest of his health team(all 2 of them) use the neurology waiting game, as a knock-on to allow themselves to completely ignore, while my son is frantic due to seizure activity. So frantic that he'll scratch all his face and legs and also punches himself in the face repeatedly (Up to four hours a day and also at night)...and he's 34.

He's living with me full-time and all his entire care has been forced to take place at home (They can't manage him elsewhere) not even at specialist health units/centres. They have left him with just 2 members of a learning disability team who ignore his plight. His social worker and her team manager totally ignore. They never respond.

Due to the complete ignoring of the services, I have had all the plans made for me for the future, by force of a 117 aftercare and just leaving me to it, without a say.

I'm sorry to hear about the services for your son. It seems that nationwide it's exactly as you've described. It's sub-standard for certain.

Cloudygal, I have sent you a P.M. to show you exactly what I'm talking about.

[Melly1]

Maine,
has he been investigated for Trigeminal neuralgia? Pheobe Caldwell, writes about it in her Anger Book (don't let the title put you off - it's actually about distressed behaviour in people with autism.) Trigeminal neuralgia is difficult to diagnose in people with autism and (like epilepsy) is underdiagnosed. The sudden pain can result in self harm and treatment can have a huge impact on quality of life.
Maybe worth investigating.

Melly1

[Maine]

Hiya Melly1, He hasn't been investigated for Trigeminal neuralgia. I have requested a new M.R.I. scan but neurology who I have only had 1 telephone appointment with, are insisting on an EEG. J. has had an MRI in 2004, revealing Temporal lobe epilepsy, L.D., and autism. Video recordings taken in 2004 were reviewed by Professor Deb (Professor of Neurology) who stated Temporal lobe epilepsy of a longer duration.
Since then, and now in 2020, after the telephone consultation, neurology has this idea EEG is the answer and no other option. J. can no longer manage to get to the clinic either. He's had EEG's many times. The whole present situation has been provoked by a new consultant psychiatrist who's only come on board March this year. He's never met J. but has resurrected decades-old information that resides at the top of J's medical files now. This consultant has written with it to J's G.P. This information is way before J was diagnosed with epilepsy. The information this new consultant has dragged up is 3 decades old.
Melly, I'll P.M. you with a video to show you how serious this is.

[Cloudygal]

Hi Maine

This sounds so stressful for you.

I have sent you a pm..I am not very tech savvy and lost my first message .First time I have sent a pm.

Take care

[Melly1]

Hi Maine,
I will reply to your PM later.

Melly1

[Maine]

Yet another week has gone by, with nonsense communications from the health team responsible for my son’s clinical heath. Mainly a concoction of complete unhelpful gibberish, which I’ve come to expect from them. Not that I should have ever got to the stage where it is ‘to be’ expected. As that should never be the case concerning matters regarding my son’s health.

So much for the regard, they are supposed to give. But then he does have learning disabilities and autism so that is the kind of service that is available, by the choice of NHS workers, who linger within services for people with learning disabilities. That applies even when communicating with a parent as, by association, they also have the same regard, to those caring.

More so, to those who are forced to do the care, for free. They even have a module for which reflects ensuring they lose as few unpaid carers as possible. It comes as a boosting program, designed by the very professionals who work with people with learning disabilities. If they can’t fulfill the module, they will force instead.

I was reading an article once online which had a charting system mentioning unpaid carers and was designed by a so-called ‘top’ psychiatrist. I wouldn’t agree with that psychiatrist being ‘top of the shop’ and I can’t as I have had to deal with that person, who was once a case holder of my son’s case.

He overdosed my son, not once, but twice in a matter of a couple of weeks. On the same dose of the same medication, he’d prescribed only a few weeks earlier. He knew, my son had already had a hospital admission and had to have an antidote before ‘top cat’ had insisted on the same level of dosage a couple of weeks later. Of course, the result was another hospital admission, for an antidote.

Really, that should have been an issue, his employers should have taken up after I had formally complained. Somehow, that complaint remained unanswered and ignored, by his service, who chose to overlook the matter entirely. By non-answer, from their complaint service and all the while, I was given no relief of my son being at home 24 hours a day, with no support, at the time.

It was a time way before the internet was available. To complain there was only one method available and that was by handwriting the complaint to the trust responsible, which took time and effort. I kept that effort up but was taken advantage of, by the slowness of replies which arrives but were never complete, which would often take many months and years, to even get to any stage of complaint system within health.

One of the methods then as it is now was delays, by maladministration. To get a proper acknowledgment, even after all the effort of writing by hand and the perpetual costs of copying letter and posting, was an impossibility. They would just send the situation around in circles and continue the plight of creating, even more, to have to complain about. Then the whole thing would be an entwined, in a deliberate act of confusing issues, so they were never dealt with at all.

It’s certainly evident, when dealing with the professionals on learning disability teams, that its most obvious they aren’t there to properly serve the client of the service. If it were true, then how is it there are so many obstacles placed in the way of getting reasonable services for people like my son, who has complex disabilities. The other thing is, it’s pretty evident they use their ‘skills’ to contradict themselves, over and over. They probably use the same to devise various plans, in order to prevent honestly and truth.

I have many examples of this, one spring to mind of the previous consultant, telling me that, his diagnoses of ‘complex partial seizures was the ‘new term’ for temporal lobe epilepsy. Then the newbie consultant only wrote to my son’s G.P. this March stating I had used the term to describe temporal lobe epilepsy. Of course, he failed to highlight the truth which was his colleague had indeed diagnosed complex partial seizures, and for many years.

The MRI scan 2004 had mentioned as findings and listed as such in the letter, autism, learning disability, temporal lobe epilepsy with a question mark at the end. All had the question mark.

Ironically, only a few days ago, a letter was sent to my son’s G.P. from neurology, which diagnoses Learning Disability, Autism, and Probable temporal lobe epilepsy. Amazingly, that is the recent diagnosis. So two findings of my son’s MRI scan 2004 are fully recognised as being a proper diagnosis, and only the one is of a probable nature and hence not formally diagnosed and that’s ‘the decision’ just from a short conversation I had with an ‘Epilepsy and Neuroimmunology Fellow’. Naturally, she briefly conferred with a consultant neurologist with the information she took from me. Much of which was not noted in her ‘report’ of what had been discussed in the fullness of content.

She had ignored what she wasn’t willing to hear or act upon. This is a common scenario that is more or less typically applied in the listening skills of professionals dealing with the case of someone like my son who is under a learning disability team. Taking full advantage of this disability and then to apply under a third rate service for clinical health services. This is exactly what is happening to my son and right in front of me, the person who is painstakingly trying to get his needs across to professionals, only to be thwarted at every move.

It is a tragedy for my son to be left suffering, and a tragedy to have to watch this happening and there really is no explanations that could be used to excuse it.

And separately, if the local authority, think they are getting away without a mention, then they are sadly mistaken. I have been contacted this last week to see ‘a response’ is coming from their complaint service. Supposedly, a response to my complaint of the team manager ignoring my emails for assistance all throughout the whole of the main lockdown due to coronavirus.

I’m yet to see if they are going to break their normal mode of not upholding my rightful complaint.

[Cloudygal]

Maine

This sounds exhausting.

Hope you get the complaint upheld.

I too am dealing with ignoring professional..

I
It is taking all my time to try and put it right..

Time and energy I don't have..

[Maine]

Hiya Cloudygal,

It's been an on-going situation due to non-listening professionals who are also time wasters.

Amazing how they can send an email saying they're going to respond and then not do a week after emailing that they will. They've taken months as it is. Always the excuse of coronavirus now but nothing has changed in the time scales from pre-corona.

I think ignoring is the way they enforce and it goes on for many years. It shouldn't be allowed and it takes a form of blatantly ignoring. Even where the matter is serious. Then they wonder why I don't want to waste my time with them, even though I'm forced to at times.