Isabel. And the horror of her Future ‘Care’.

Isabel is Isabel.

She has huge black eyes, dark curly hair and the prettiest of smiles. Her skin is silky white. Her voice soft. Her laugh mischievous. She screeches with joy and claps her hands when happy. She is dextrous and agile, never tripping, or dropping the several dishes/videos she efficiently tidies. She giggles as you fall over her quickly drawn out foot.

She loves watching people, particularly in Spain, and loves nothing more than being in a group she knows accept her on her terms, or better still simply ignore her. She likes to do things quickly, hates clutter, and loves walking, and being tickled.

Is hypersensitive to other people’s emotions, needs solitude, and understands more than we could ever know, and has a spooky sixth sense for nasty or fake people.

She is a pure soul, that is happiest when loved. Her hugs are freely given to those she likes, and are the warmest in the world.

But none of this matters, or is relevant.

To the state, she is whatever thy need her to be, and they are the experts.

Her CAMHS psychiatrist, stated, as an autistic, she could not form relationships, (very convenient for the state machine), her educational psychologist, refused to allow her to be described as ‘bright’, despite her tested IQ, being well over a 100, (very convenient for her SEN funding).

The state’s answer to her malnutrition, abuse, rotten teeth, faecal impaction, and depression in her residential school, was not a dentist, impaction removal, or change of abode, but, an expensive inpatient stay, to enforce anti- psychotic drugs, in a CAMHS assessment centre with an admission required IQ of less than 50.

Issy’s future state carers, will be an anonymous, ever changing, people service. The system would not need, or indeed allow them to know her. They will be a sea of itinerant, oppressed ,poorly paid, zero hour tools, in an impersonal, risk assessed, profit hungry machine, that will process Issy for every penny- housing benefit, government subsidies, disability allowance, special care allowance, educational packages, mobility allowance- all can be made available to her corporate carers in just 4 months, when she reaches 18.

And fortuitously, for the state, the worse her behaviour becomes, the more money they can claim to encage her, and as always, her behaviour can be blamed on her autism.

Issy’s birthdays were always tinged with sadness, no discos, no boyfriends, no exams, more judgement, but her eighteenth on the 17 th December will be the saddest.

As soon as that day dawns we can no longer legally make any decisions for her- even ring the doctor or dentist. All our parental rights disappear overnight.

Under the Mental Capacity Act, Issy can, and will be deemed ‘incapable’ of making her own decisions, and the state, not us, will make them for her.

Her valiant, persistent efforts to stay with her family, will have all been in vain- as will our care and love.

Process rules.

A social worker, known as a ‘best interests’ assessor, will assess the state’s interests, as those in Isabel’s best interests. But will ‘consult’ with us,  our social worker has already reassuring us, ‘We would let you know if we intended to remove Isabel’.

The Court of Protection then, in secret, with us gagged for life, will rubber stamp the social services ‘best interests’ decision.

Isabel will have an ‘independent’ mental health advocate, a stranger, preferred, to her parents, and paid indirectly by government. But they cannot be involved in any decision making process.

Her legal representation will be an Official Solicitor appointed and paid for by the state.

All will be a one way unstoppable cabal.

The judge no doubt, will convey similar sentiments to the judge in Northamptonshire NHS Trust v Another 2014,

‘ I have been struck by how similar their concerns are to fears of every parent whose child leaves home on the first steps to independent living. The sheer normality of their reaction signals to me that ML like any other young man is entitled to the opportunity to fulfil his potential’.

This despite ML’s previous torture at the hands of the state, his parents, and his own wishes, his inability never to be allowed anywhere without two guards, let alone be ‘independent’, and no one having a clue, as to what was meant by his ‘potential’ .

Only a few months earlier, Northamptonshire NHS trust had been responsible for the horrific deaths of two young male autistic inpatients, from untreated facial impactions, force fed respiridone, constipation being a side effect, until their organs closed down.

Their agency care workers forced to watch.

One report in the Telegraph their only eulogy.

And still no statistics, or control on the GP use of such medication, despite NHS issuing yellow cards for autistic deaths from antipsychotics for years.

This sad young man, had been made subject to the latest, most costly ‘extinction theory’, subjecting him to things, he had an aversion to, his own everlasting Room 101, until an ‘extinction burst’, if ever achieved, unbelievably, ‘experts’ thought this would cure his aversions, despite his autism.

Read here of his fate and his mother’s fight to keep him from it http://www.mentalhealthlaw.co.uk/Northamptonshire_Healthcare_NHS_Foundation_Trust_v_ML_%282014%29_EWCOP_2,_%282014%29_MHLO_31

It did not work, and his parents had the horror of trying to undo the terrible state damage with their love and care at home, where he eventually improved.

Despite this state ‘care’, the judge sent him back for more of the same.

Soon, as with an increasing number of autistics, his teeth will be removed to stop him fighting back, and his ‘potential’ will have to be achieved in indescribable anguish, in a padded cell, ‘eating’ through a straw.

Issy’s fate may be similar, if she survives the respiridone, she has already suffered two untreated by the state impactions.

She will be removed to live in an ‘independent’ no choice 24/7 survellience living unit, usually one of the many flats lying vacant in our city centres.

Her social worker wanted to use it for respite, and I am suspicious conversations, and possibly a visit to a unit, may have triggered the big melt down in the city, which preceded her now 4 month refusal to go out.

Adult services already met with us in May, and filled up their forms, which despite its many ‘domains’, has none for medical care/existing conditions.

Officiously the  adult services social worker informed us, they do not provide ‘specialist’ autistic care, but they certainly,at an average of over £6,000 a week, pay the only monopoly service provider for it.

Evidenced by the mixed disability line of backpacked walkers, one a wheel chaired autistic, with their chatting together care workers, I spotted going towards one of the city’s apartment blocks recently.

The adult social services manager proclaimed, ‘Well what do you want for Isabel in the future’,

Apparently the novel idea, of a disabled, vulnerable adult remaining with those who have known and loved her all her life and she them, rather than alone with strangers, could not be in that person’s ‘best interests’, as it wasn’t an option.

One of workers in the kitchen reassured me,

‘They will allow you to visit her’.

But how could anyone stand impotently by, watching their vulnerable, disabled daughter encaged, and tortured, wondering if every visit might be their last, as the self preservatory,  caring cabal, might deem such visits, not in their daugther’s ‘best interests’, as they upset her?

The frightening reality was, that the carers in the kitchen, would have the opportunity to spend more time with my daughter  than I would, and, the option.

Looks like nothing changes.

It is now only 10 days since my last post.

It feels longer.

The last doctor call out, was just over a week ago.

Yet  another stranger, a tall attractive young Asian lady, with a dark green designer hand bag, lipstick, leggings.

With an assertively, confident, professional attitude, honed, no doubt, in her GP role play exercises.

The lady appeared to know nothing of the last 5 doctors’ visits, but professionalism allows no apology.

It must be ever confident, and in control, and adept at handling patients.

As usual we went through the refused examinations, symptoms, food, and hydration.

She knew nothing of the urine sample, left in earlier that week, and did not have a pooh sampler, but did proffer a list of causes-  food allergies,- unlikely as  not eating properly for weeks, and at 17 would have already kicked in.

– irritable bowel syndrome, which I proclaimed  a symptom not a cause, which surprisingly disarmed her.

Appendicitis was again my suggestion, and I promised to examine for pain.

Eventually, she left, no one the wiser.

Me promising a pooh sample.

Her appearing to realise she had forgotten to show compassion,

’ I know it’s not easy’, she said with a pained look, of sympathy,  and patrony, obviously in need of more practice.

We have heard no more from the doctor.

Isabel appears better, is not wrenching, but still not eating very much.

Last week in desperation, and as my husband was now home,  I asked for 4 days without the workers in the kitchen, to see if this would improve Issy mood, and get her out.

Unfortunately, the days coincided with that time of the month, when the bathroom  looks like a Psycho production, and the ibuferon is out.

But I really enjoyed the freedom of not having the awkwardness of the workers in the kitchen.

And the increasing inhumanity of having any pertinent comments I made, ignored or diverted.

No criticism of them, I feel  sorry for the position they are placed in, only of their prescriptive agency employer.

Again the workers are a service, forced to be professional.

Our social worker and her manager both want a meeting, I assume separately, re my formal complaint to the LA, which was eventually acknowledged, and now must be investigated by an ‘independent’ investigator, presumably more meetings.

We are certainly keeping, a lot of people gainfully employed in ticking boxes, increasing our stress, and as ever, wasting our time.

And more importantly achieving nothing for Issy.

Respite care and a secret social worker

Respite care and a secret social worker.

Respite care and a secret social worker

The only communication from social services, since our meeting, confirmed their agency request for   Wimbledon   support.

A five worder, complete with standard exclusions of half a page.

A week before the trip, another email,

‘Are both Mrs x (me) and yourself going?’ Workers must have leaked, I might not be.

I asked,why she needed to know,she replied,

‘I think agency would like to know if they will be supporting Mrs x to care for Isobel (as always spelt incorrectly), or, if the two workers will be there with Isobel?’

I again e-mailed as to why, and received,

‘I’ m not sure. The employer gives the workers a job specification and do risk assessment … so it is probably for that reason’.

I was still none the wiser, nor was the social worker, as to whether, or not, I was in fact going.

Throughout, the now 18 month support, I had not been required to be at home, but usually was.

This would be my first overnight respite for 18 months, and the agency fee would be the same, whether I was at home, or not.

On the 30 th June, at 16.00 hours, the respite onslaught began, the first shift till 22.00, second till 07.00, third till 14.00, fourth  to 22.00, and so on.

This feat of logistics, made my head spin.

But worse, made me appreciate, what it would be like for poor Isabel, in independent living, policed by itinerant zero hour care.

And, unlike Issy, I was not autistic.

The effect, such ‘care’, must have on an autistic person, is horrific.

And, the worse their behaviour is made, the more money available for their ‘care’.

And for the cosh of anti-psychotic drugs.

So profits, pharma, and, the independent LA corporate independent living providers.

During my ‘respite’, my kitchen became a factory floor.

Without the expense of rest rooms, canteens, or, clocking in machines.

I   signed some 2O timesheets.

My house was Isabel’s respite facility, and, I provided her food, drink, and clothing.

And, managed the staff, meeting and greeting, and farewelling.

This was maximised profit, commercial awareness at its best.

Despite this the LA, paid the agency over £2,500, for  3 days.

By day 3, at the start of the 22.00 shift, I was feeling well invaded, and definitely, in need of respite.

And in no mood to meet and greet.

Fed up making jovial small talk, to a myriad of different workers, one a total stranger, and another met once, I   forced myself into the kitchen melee of outgoing, and in coming workers.

A large, imposing stranger introduced herself with a strong, assertive handshake, and sat down.

I reassured her that a gentleman would soon be joining her.

She retorted ‘she knew’, having met him outside, and, ignored me.

Her reaction made me wonder why I had bothered, and by now, I was so ppped off, I said so, but was still ignored.

The lady then demanded I go through   Isabel’s routine.

I then uttered, what I had so far avoided saying, to previous workers for fear of causing offence,

‘I’m not supposed to be here. What would you do if I were not?’

Without reacting, she replied, ‘Where should you be?’

I ignored the question, returning to the reason for mine.

The ad hoc, ill prepared,unbriefed care workers, and the huge profits their agency were making out of them.

But  she dismissed me,  with a patronising,

’ You  need not concern yourself with all that’.

I was, by now, finding it difficult to formulate sentences, so I retreated to the lounge.

Within   minutes the door opened, and in walked the lady, with a,

‘Are you going to show me round the house’,

Before, I could stop myself I replied, ‘No’.

And she closed the door.

Shell shocked, I tried desperately to concentrate on the TV, and not, the night ahead.

I eventually steeled myself to be nice, and returned to the kitchen.

And showed the lady round the house, particularly   the places they could sleep, and got Issy’s bed clothes ready.

Issy, having a six sense for social workers, was unusually well behaved.

The next day, on mentioning the lady’s name, I overhead  a shocked worker, asking why the agency, had sent a social worker.

I now know, I was definitely  right, about not going to Wimbledon.

My supposed ‘ill health’

My supposed ‘ill health’. Sadly great post, re targeting of my health.

I had a persistent cough, that was now affecting my general health, reported by social workers, to their boss, who then informed my GP, who wrote me a letter asking me to attend his surgery for an examination .

On ‘investigation’ of complaint, that I did not have a cough, social services boss said it  was her, not her social workers, who had reported it, she had met me twice in the kitchen, and never heard me cough.

I also had 2, within prescribed limits diabetes tests, done on my last visit to GP over 18 months before, due to the fact I still had recurring ME symptoms, now for 10 years.

ME never mentioned, as state accepted, it does not exist.

Despite negative tests, GP insisted, I had now raised blood sugar, due to another test based on weight and age.

I am old and fat. Much fatter at my last weighing at GP clinic 10 years ago.

Since, receive letters from NHS for eye screening, as a diabetic.

I have 20.20 vision, and have never worn glasses.

Have no symptoms of diabetes.

And bought my own test and negative.

Sorry post was really good, but disappeared, when I moved it from pages where it was placed by accident, and I can’t find the original——I

Wimbledon can wait

Wimbledon can wait.

Wimbledon can wait

My only escapes  were to Sainsburys, the dentist, and hairdresser ( once).

Oh, and a three day court hearing, but that is for another blog, in over eighteen months.

Yes, Wimbledon would have been nice… in fact anywhere  would  be.

But Issy,  as you know, was not in a good place.

Three months earlier, she had realised her care worker outing friends, of  nearly a year, planned to remove  her forever, from her family.

The post traumatic shock disorder, she had displayed on returning home, evidenced by her  anguished ranting of, ‘ you can’t live with your family’, ‘stop your f’in mithering’, ’stop asking me the same f’in question’, and worse, had returned .

And she  still refused to go out, and was  generally  unwell with what appears a tummy bug.

So what would be the affect of all her family disappearing ?  Like all her previous carers had done?

This had not been considered by  anyone, except me.

Worse still, I  knew it might escalate her agency worker’s risk assessment, from  trivial to intolerable in seconds.

Their legal duty to reduce the risk would then be  absolute, and they could  not continue to care for her, until the risk level has been removed.

Translated,  this meant Isabel could be removed to a CAMHS assessment centre , drugged with respiridone for ever under the MCA.

Not returned home, but to the expensive cage of an ‘independent’ living unit.

I decided Wimbledon could wait, as could, the rest of my life.

Back Again, two months later

A lot, yet nothing, has happened since my last post.

Our social worker has transfered to another full time one.

This justified a meeting in my kitchen for nearly an hour.

The two carers removed themselves to the lounge.

Issy still in her bedroom.

No mention of my complaints by email, or my comments on the lies and spin in the latest core assessment.

As is the normal modus operandi, of all the multitude of stranger official visitors to my home, the hour consisted of them questioning me in turns, for information, already on record.

Asked a million times, and no doubt will be asked again.

I dare not remark on this, or display any lack of engagement, such as silence.

In any event, silences make me very uncomfortable.

As usual it is stressful, time consuming, and appears to serve little purpose.

We had, since Issy refused to return to her enforced residential school in January 2013, requested overnight respite .

Which was eventually arranged for 30 th june, 3 nights, to enable us all to go to Wimbledon.

The dates had been made known to social services two months earlier, but the agency, who were to provide the care workers to sit round the clock, rang shortly, before this meeting, to say they could not guarantee cover, as had not received the authorisation from the SS !

This, of cause,was blamed at the meeting, on us for not supplying the train times,!

Issy, from walking out everyday, to various places on buses until 3, had not now been out for 3 months, hence the carers in the kitchen.

The reason, though never admitted or discussed, and unknown to us, was the education package’s rush, to remove her from home, to an independent living unit- one of the many flat developments in the city.

Her refusal to go out  coinsiding with, what appeared to be, a secret targeting, by the education package, before the last child in need meeting of me and my husband and our house.

Legal papers were probably waiting to be rubber stamp, for a deprivation of liberty order under the Mental Capacity Act, to remove poor Issy for ever.

The workers taking her out, forgot  Issy is highly intelligent,  can hear, and desperately wants to remain with her family, particularly, after her desperate experience in her residential school, which physically and mentally, she eventually found, impossible to endure.

Need to go, but will write again about the trip to Wimbledon, which today ended today.