So bad it defies Beggar Belief

Many things have happened this week, that just causes me to lose all faith in the system of care regarding my son.

He has been left with the same learning disability team. Apparently, allocated a consultant who is under the ‘previous one’ and they have also allocated a ‘nurse’ who again is from the very same team. I have written back and stated I’m not at all happy about this.

I specifically said, some time ago now, that I didn’t want anyone from the same team and more especially so, not a consultant under the one he had. I have been waiting and waiting for a new team for my son and an epilepsy specialist nurse, to find the situation back at a lower stage than square 1. It’s an unacceptable position to be in.

Then I had the appointment from a neurologist, who was referred through the previous consultant who hadn’t even alerted that my son is housebound and it was expected that he would be able to travel some 12 miles there and sit and wait at the clinic, which is an impossibility.

I phoned to ask for a home visit, to be told, they don’t do home visits and that my son’s epilepsy nurse should be attending the clinic. However, my son has no specialist epilepsy nurse allocated. So the appointment was cancelled by the hospital on the basis my son, can’t access it.

Years have gone by now wasted, and all thanks to the previous consultant and his stupidity in referring my son to a hospital that he knew full well my son couldn’t access. He couldn’t have picked a hospital further away to add to it.

Not that it would matter how far away the hospital was, as it would be totally impossible to get my son there. He won’t even go into his G.P. surgery which caused an issue last year with his previous G.P. who was not prepared to do a home visit as the surgery was just slightly ‘out of area’.

The consultant who referred was totally aware of that situation.

Even now my son is at a surgery nearer, they always take issue about having to come and visit to complete blood tests (my son is diabetic). Each & every time it has to be explained and repeated why he can’t go in and attend, sit and wait.

The closer surgery itself is not very good, with G.P.’s chopping and changing his medications to many different ‘cheapest’ brands which are causing chaos to his medication regime and they are issuing tablets he can’t swallow (then ignoring the fact and continuing to issue them). Also randomly issuing liquid medication making it much harder and it is getting difficult when he doesn’t like the taste and spits it out.

There is no thought whatsoever before this G.P. cost cuts and issues unsuitable and often medications which are clearly from other Countries and even the name of it isn’t English.

Sameness is so important to people with autism. Even the mouthwash he needs has been changed to a cheaper one and he doesn’t like the taste, plus it has a caution ‘not to be swallowed’. My son is really getting a shoddy service and all because cutting costs is more important than making reasonable adjustments for an adult with autism who is very sensitive to tastes and he always has been.

He won’t eat most foods, it’s that bad.

Just at the time, he was deprived of his liberties and forcibly held on an A.T.U. the food was all different tasting because they purchased shops own brand or smart price that it put him off many foods, that had taken years and decades to introduce.

When he came out, his diet was even more restrictive. It whittled down to just baked beans and cereal only.

It’s always frustrating when many years of hard work goes down the drain and all thanks to ‘idiot inconsiderate decisions’. Such as the 17 months withholding of his freedom, which also left him scared to go out due to the harsh and abusive inhumane experiences he’d had whilst being contained, at the say-so of a professional who admitted that ‘he’ himself was a control freak… and don’t I know it.

My son can’t even get out of this man’s clutches, as he continues to be able to control my son who can’t move to a different learning disability team despite my requesting a move in order to rid my son of a non-service, he’s receiving. Again, that situation is controlled by that professional.

Just in the last few years, this person has controlled a number of things.

that my son has not been allowed access to a disabled facilities grant, by failing to respond to an O.T. who carried out an assessment and had requested information and confirmation of my son’s disabilities. The O.T. closed my son’s case due to the lack of response from this consultant. He actually made no response whatsoever.
Failure to put to panel a request for an essential item of furniture after he said he would do so, over a year ago.
Has failed to review my son’s medication.
Attending with a nurse who he had forcefully drafted in on just the 1 occasion, who later sat on a multi-disciplinary meeting and assured my son didn’t receive full continuing health care, despite not knowing him at all.
Failed to get a specialist epilepsy nurse, on my son’s case (for 14 years).
Referred to a neurologist, 12 miles away, knowing full well my son wouldn’t be able to access the appointment and he didn’t mention at any point in the referral my son was housebound either.
Making no attempt to address this issue or assist with it (for over 8 years).
And this professional has created the entire situation, by his previous ill-thought-out actions towards my son. In doing this he has lied and forced the outcome, by the horrific lies he constructed in 2006, that my son was going for a respite stay on an A.T.U. (the only place that could provide respite he said) He will need to be sectioned but don’t worry about that…I won’t stop him going home…and what did he actually do?

Yes, he prevented him from leaving.

On the day, I asked for him to leave, this professional withheld my son’s freedom after stating he could in fact leave. He waited all day until 6 pm to Barr my son’s return home and stopped him leaving, for 17 months. He used my son’s learning disability to prevent him from leaving, coupled with behaviour associated with the type of epilepsy he has which my son can’t control…only this consultant twisted this just to withhold my son’s freedom. He abused his power in doing this.

My son was treated appallingly and restrained during seizures, for 17 months. On one occasion my son’s eyes bulged so badly as a direct result of restraint. They had almost killed him.

And there is more which defies beggar belief.

Beggar belief
In British English, beggar is a verb meaning (1) to exceed the limits of, or (2) to impoverish. The first sense is what’s meant in the verb phrase beggar belief, which is used to describe something that exceeds the limits of belief. The less common beggar description indicates that something is difficult to put into words.

I gave up on social services a long time ago, years of arguing with people who just don’t understand and have their own rules and agendas.

The services are in complete and utter disarray. Sadly, it’s going to take many tragedies before they wake up to the real situation. I was dismayed to hear the recent comments about family do more, not rely on the state. They really haven’t got a clue.


I am so sorry you are having to deal with all that.


Currently we are having a good experience with Social Services.

I wouldn’t want to put others off seeking help.
We happened upon a lovely understanding social worker. But before that we had to refuse to work with two others!

It has made a positive difference to me

I just want them to do what they are paid to do. Implement the Care Act. SSD are supposed to write the Care Plan, but here, the provider writes it - without being told ANY of the things previously agreeed, but not implemented. Even when I’ve written everything down carefully, it’s just ignored.