2006-7 CAMHS, Risperidone, Care action.

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Isabel in her special needs school.

Eventually, the taxi- journey proved impossible, and Isabel, now 10’s, mixed disability school placement has broken down.And she is forced to attend Sheffield’s Children’ Centre.

Where she is happy. Particularly when she got to sit in the babies’ room.

She continues to soil herself. And we are referred to a urine incontinence clinic,  met with a consultant, but as it is faecal, get neither help, nor nappies.

A CAMHS team became involved.  And we meet with the psychologist ,and the psychiatrist.

And the psychologist observes Issy at the children’s centre.

Issy comes home distressed, continually asking,’ Why is XX looking at me?’

We have another meeting.

No information is forthcoming from the psychologist’s observation..

We describe, how much Issy loves her holidays to Ireland and Menorca.

But that the travelling, because of crowds and staring, can make her anxious, evidenced by her mantras. She would ask,’ Why is the man wearing glasses?’ To which must be replied, ‘Because he can’t see without them?’ She then replies, ‘Why can’t he see without them?’ To which must be replied; ‘Because he is blind’.

This ritual calmed her down, but could be needed up to 20 times.

The psychologist implied that by forcing her to travel we are abusing her.

No one asks, or is interested in her poo incontinence, or its effect on her behaviour.

The psychiatrist prescribes a low dose of risperidone, stating that it helps autistic irritability.

She provides a pink slip with the list of side effects on – irritability, weight gain, dizziness, tiredness.

There is no physical examination, other than recording Isabel’s height and weight..

We put the anti psychotic drug in her blackcurrent fruit shoot bottles.

It has little effect on her violent outbursts, so after a meeting the dosage is increased.

I ask for any research that supports Issy’s medication.

I am given an article, which resulted from a conference in America, funded solely by Jansen and Jansen, the manufacturers.

The studies show a fifth of the participants were withdrawn due to serious side effects, and the outcome was little more that the placebo.

I email pointing  this out but am told that is all they have.

Poor Issy is 10,  breathless on climbing stairs , tied, agitated/ unsettled, eating until she  regurgitates, constantly weeing herself, so,  now incontinence for both poo, and wee and still no nappies.

She looks unhealthy with black under eyes, and constantly cries real tears.

She is a sorry sight.

Isabel on Risperidone.

Isabel on Risperidone.

I complain about the effects.

We have a meeting with the psychologists and psychiatric nurse, the prescribing psychiatrist is unavailable.

We describe poor Issy’s sad condition, and ask for a physical examination, as we are worried about her health.

They say they will relay all this to the psychiatrist. So a complete waste of time.

We are, both working fulltime and coping with poor Issy.

The psychiatrist meets with us to tell us, they cannot be side effects of the medication, unless they are those listed on the pink slip. And does not discuss our  request for a physical examination. Another waste of time.

Luckily for Isabel we went to Liverpool to visit relatives for the weekend, and our bag containing the risperidone is stolen from the train.

Issy had to go cold turkey for the weekend.

We requested more risperidone, not really wanting it, but trusting CAMHS, but were not sent any.

Isabel’s behaviour improved, she stopped wetting herself, over eating, crying, and was less agitated.

I emailed a detailed complaint to the CAMHS’s team, for them to refer to their manager, who met with us, and listened with a pained expression, of patronage and sympathy, but said little, other than, ‘it must be hard for you’.

We were surprised to see our social worker waiting to see her outside the door as we left.

Within two weeks, we received an application by the LA for a care supervision order and were summoned to appear before the Magistrates Court within 48 hours.

My telephone call of shock and request for more time to our social worker was ignored.

We didn’t have a solicitor, so we rang one named on the list provided with the Summons, and she met us at court.

Our social worker gave no reason for this application, and we hadn’t an inkling that this could, or would happen.

Our last email from our social worker, had been to arrange a meeting, to discuss Issy’s future education, as I had found, and been in touch, with the head of a National Autistic School nearby.

The day of our court appearance, my husband as usual took our other daughter to school, and went to work.

I was left to get Isabel up, and bathed, and as usual, she was covered in poo, unknown to us, due to an impaction.

We had spent 8 months trying to get a medical investigation, but to no avail.

Isabel’s behaviour was becoming increasingly violent particularly when covered in poo, and I was alone.

The taxi arrived as usual, and I took her to the Children’s Centre, and then went on to the Magistrates Court.

We went into a small room, our solicitor announcing, ‘I used to shout at my children, until I started working part-time’.

She continued with, ‘I believe you have not been well’, to which I pointed out, I worked full time, and had never taken sick leave, and had just finished marking 280 exam scripts.

‘Social services will need your GP medical records, and the court will need psychological reports on you both’.

All of which, I continued to say were unnecessary, as they were, as neither I, nor my husband had ever suffered from any mental, or physical problems.

But she kept the pressure up throughout the proceedings, by veiled threats, that, if, the court did not have such assessments, they would have nothing to go on, and might presume the worst.

She continued, ‘I ve just had a word with the social worker, and she is prepared to provide you with restraint training’.

’Your case is a very complex, it will need to be transferred to the county court’, fortuitously allowing her to claim more costs.

The Magistrates,agreed to this transfer, complimenting us on making progress, by agreeing an offer of restraint training , which we had been requesting for years, and, to date, have never received.

We then picked Isabel up from the children’s centre.

We managed a week’s holiday in august in Ireland, but the stench of Issy’s poo in the hotel room was unbearable, and clothing was a problem.

The case continued.

We were forced to turn up at 10.00 am, our solicitor  handed me the latest social service application,  which I  amended, with lots of ‘if’s and ‘reasonables’, aware, that  failure to comply, when ordered by the court, should Isabel  refuse, would automatically invoke an interim care order, and  police removal, despite the application’s supervisory nature.

We would stand, huddled in groups, in the court foyer, the social services solicitor and social worker, the CAFASS guardian and her solicitor, and us and our solicitor. At one point so close, I remarked to our social worker,’ you could get us to court but you couldn’t get us nappies’.

Social services did not need this expensive, time wasting charade.

We had never, not complied with their requirements,- access to Isabel , attendance at the Autistic School, I had found, in September, attendance at Children’s centre, a hospital appointment for a poo scan, which we had fought for.

The position was quite the reverse; it was the Local Authority who had failed in its duty to provide support; education and medical care not us.

They were the ones, who should have been legally forced to comply with their duties, but instead were using the law to cover their neglect, with the ultimate threat of an interim care order.

They could, also, remove our other daughter

At the second court hearing, now in the plush surrounding of the purpose built care courts, our solicitor went into the judge, without us, as  appeared the practice, but I have since found, shouldn’t have been.

She returned with an ‘agreed’ court direction,  that my other daughter, be assigned her own social worker, and undergo a psychological assessment.

I told her, social services had not even discussed this, so how could we have agreed it.

If she had, she would have to go back, and disagree it.

Furious, I stood up and said,’ if they go anywhere near her we’ll be on a plane to Australia, to which she sneered, ‘I’ve never acted in an abduction case before’.

She then told me, if I didn’t agree, the court would have nothing to assess my daughter’s welfare on, and might apply for a care order.

As if on cue, the guardian’s barrister, then rushed in to announce the judge wanted them in court. But despite my solicitor’s forced speedy exit, I stood my ground.

She returned to inform me, the judge had told the social services, if they wanted their direction, they would have to apply for care order.

And the pressure for a care application was kept up by the guardian’s barrister, who would gain, as would my solicitor, up to an additional £5,000, by her audible concerns about my daughter’s welfare, to the CAFCASS guardian.

The CAFCASS guardian still attended my daughter’s private school twice, interviewed her teachers, and my daughter ,much to her embarrassment.

Eventually, during proceedings, in August 2007, over a year after Isabel started soiling herself, after our only night of respite, we arrived at the poo clinic.

Isabel was a star, the terror of ketamine, and inpatient attendance was avoided, and we were shown the scan, a faecal mass could be seen almost up to her chest.

I could only guess at the pain and discomfort this must have caused her.

How brave was she, and how appalling were those statutorily charged with providing for her.

We were charged with clearing it out, which despite the mess, we were desperate to do.

Sadly, I suspect the real reason the NHS were  now forced to sort out the impaction, was not Isabel’s welfare, but the National Autistic School, not wanting the mess of an incontinent child.

I spent weeks cam -cording my statement, as I felt, my solicitors was bland, and insufficiently detailed.

I still have the painful DVDs, the poor solicitor’s typist typed, more than 40 pages.

I bought her a bottle of champagne.

The statement was never used.

The social services submitted no expert evidence, and the application was withdrawn.

We could not sue them, as they do not owe a duty of care to parents when investigating abuse.

Recently, actions for damages, have been successful for breach of s8 of the Human Rights Act, but this would be more hassle, and the time of finding a solicitor, and, as  legal aid is not available, paying them, and, risking the LA’s huge costs, if we lost.

 

3 Comments

      1. Worse still, the system is geared towards writing off the autistic/LD, ignoring their physical problems, making them pharma cashcows and drugged so easily baby sat.

        Whilst at the same time assessing on the deemed severity of what they say is because of their ‘disorder’. So the worse their behaviour is made by their treatment the more money can be claimed for it.

        There is no accountability for this treatment even if it results in death. See post on Stephanie Brincliffe and Thomas Rawnsley.

        Only 1% of deaths are investigated, and even then, neglect is not found and they die of ‘natural causes’.

        So it is a sealed system, they are making billions out of our vulnerable and parents can do nothing.

        Thank you for your comment it is much appreciated.

        Best Wishes,
        Finola

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