Sister Eleanor’s cry for Issy

issy photo fb‘I would be very grateful to those who take the time to read this

A lot of you may have caught onto the fact I have a severely Autistic sister, Isabel (Issy), 22.

Issy decided to remain at home one weekend and not return to her NAS residential care school, enforced upon her by care court application after attempts to MHA section, without any assessment at the age of 10.

After being so abused in NAS  (pulling her hair out, 48 bruises one weekend noted as ‘self-harm’, far too skinny (no period for a yr, not noted), undetected potentially fatal fecial impaction, an unexplained cauliflower ear, two bites, verbal abuse from a carer and witnessing the distress of other residents, all compiling to cause her to suffer intense physical and emotional suffering for most of her time there.

All at the cost of £177,000/yr ,paid by the LA with taxpayer money. At the age of 15 she couldn’t even write her name ( when she could at 5), brush her teeth or wipe her bottom.

Since her return, we’ve received an interminable series of ever-changing pairs of LA care and education workers visiting our house.

They’ve also let Issy down one way or another, abruptly leaving her and/ or telling her she was to go to independent living and never see mummy or daddy again.

This threat, Issy repeated herself through her daily short repetitive mantras of distress.

A particularly awful statement, considering she was then and still is suffering from PTSD, as a rational reaction to her previous treatment of care, which is furthermore exacerbated, due to her autism, that makes her innately more sensitive to nastiness anyway, especially from those she trusts, as Issy had shown that she wanted to live with her family.

As a consequence, she’s barely stepped a toe outside our house since May 2014, for fear of never returning.

To this day, we’ve had no support. No respite from 24/7 care, often endless nights, and just weekly supervision by Sheffield Health and Social Care, a private company, run for profit.

Two workers come in and never even encourage her to brush her teeth, which are rotting, nor try to take her out for walks.

If she says “go now”, (one or her common sayings). After an average of 15 minutes of unproductivity, two/ three times a week they leave

Not asking my parents and I how we are, and even being quite confrontational at times during periods of intermittent hostile silences.

Our 24/7 support allowance is £62.50/week.

Her DLA has been stopped and we’ve yet to receive PIP, where a private company funded by the NHS owning community/independent living whose providers would receive £8,000/week.

If we wish to discontinue the Health and Social Care visits, which amount to nothing no help with Issy’s basic needs, and actually make her regress, we would have to go to court, seen as the state would deem us to be interfering with Issy’s rights even though they’ve written her off as having no capacity following the MCA act anyway, and are blatantly disregarding her wishes to stay at home so much so she daren’t ever leave the house threshold.

I haven’t written this as a means to exercise my ‘cynicism’ or for scare-mongering. Nor have I given much care for the perfunctory need to preserve the dignity and privacy of my family and most significantly Issy, as might be interpreted. We are far past that point.

It has been driven by a compulsion to provide a brief glimpse that doesn’t even touch the sides into my sister’s suffering inflicted by the state and our oppression and bullying – not only to inform people but to expose what countless severely disabled individuals and their family’s suffer in this system but are overlooked and dismissed. The odd exceptional case publicised.

Through this little amount of exposure, I want to chip a little into the path to tempering the pervading state control and detrimental interference of family life for the sake of venture capitalist profit. To try and help all autistic and their families, from their daily oppression, not least our own.

I cannot coerce anyone to A) give this time of day or B) believe the entirety of what I have just written. It is the people’s choice as much as the profit makers for this flagrant breach of human rights to continue through public acquiescence and indifference.
Ultimately, this post has come about because I love my sister, and am sick of her and my family being hounded.

Thank you.’

My daughter posted this in her facebook received over 200 comments but now effectively forgotten.

we as a family are beyond fed up, but who cares ?

8 Comments

  1. May I suggest that Issy is potenially entitled to NHS Continuing Health Care funding. I suggest contacting Fawley Dwek solicitors @ Manchester who are the UK experts in these matters. They will send you a brochure on request.

    Reply

      1. Your answer tells me your assumption is incorrect. The NHS rarely, if ever, brings CHC funding to the attention of the person, let alone the relatives. Additionally, if an inital assessment for CHC has been made, followed by the Full Assessment then this was out of order as you were unaware of the procceedure.
        There is a fine line bewteen Social Care Needs and Health Needs:
        • There is no formal definition of Social Care, but it’s often described as dealing with the “activities of daily living” i.e. needing help with day to day activities like feeding, washing and dressing, mobility, using the toilet etc., but it also includes:
        • Requiring help in terms of maintaining independence, social interaction, protection from vulnerable situations and help in managing complex relationships.
        Healthcare Needs
        • There is more (although not absolute) clarity in terms of the definition of Healthcare needs. A Healthcare need is one related to the treatment, control or prevention of a disease, illness, injury or disability and the aftercare of a person with these needs.
        2. The Checklist

        Twelve Care Domains are scored: A (hgh) B (moderate) C (low)
        Includes:

        1. Behaviour*, Cognition, Psychological/Emotional, Communication,
        Mobility, Nutrition, Continence, Skin Integrity Score, Breathing*
        Drug, Medication and Symptom Control*, Altered States Consciousness*

        There are hundreds of people who have been decieved by the NHS, simply beacuse they are not transparent about this potential funding. In my own personal situation, I was just told my realtive would be means tested after 12 weeks for care – Wrong – No one from the unit told me about CHC funding.
        If Issy was eligible, then you could get private care (your choice) etc which would cost you nothing.

        I do not work for the Fawley soicitors – I just get incensed when so many people miss out, loose their house, wealth, go bankupt all because the NHS does not want to pay out and go to arms length in order to prevent folk from getting what is their NHS right.

  2. Reblogged this on | truthaholics and commented:
    “I cannot coerce anyone to A) give this time of day or B) believe the entirety of what I have just written. It is the people’s choice as much as the profit makers for this flagrant breach of human rights to continue through public acquiescence and indifference.
    Ultimately, this post has come about because I love my sister, and am sick of her and my family being hounded.
    Thank you.’

    My daughter posted this in her facebook received over 200 comments but now effectively forgotten.
    we as a family are beyond fed up, but who cares ?”

    Reply

  3. Eleanor; every word you have written is more than true, and we can’t change it. Finola: I have fought my usual battle re. continuing health care, its just another ludicrous scam. First of all Martin is eligible, then he isn’t, then he is……….now we have Surrey and Chiltern agreeing to pay 50%/50% of his care fees of £2400 a week, while they have both agreed that he is NOT eligible, and I cant challenge the decision because he – well, because I am his mother or something. Eleanor – just keep on chipping, don’t give up WE WONT LET THE BASTARDS GET US DOWN.

    Reply

    1. Thanks for your support Shirley, still fighting the State at 82 ? for what they are under a Statutory Duty to give him and he has his own trust fund, they take from, but neither you, as his mother, nor he as the service user, has any control over the money spent ,nor can complain about the service provided.

      Such is the stitch up for max profit.

      Your name will go down in history as the ever tenacious, vilified ,brave lady who fought both the High Courts original inherent jurisdiction and then the all powerful COP under MCA. and your son is merely epileptic, yet represented by the State OS and you are merely his mother, so have no locus standi.

      Surely the world, one day will see what this country can stoop to for corporate private profit in the name of austerity, with a defecit of 3 trillion.

      Take care love to you and Martin, hope you manage to see him at Christmas but no doubt, as before that will not be afforded by his State captors. best wishes Finola

      Reply

  4. Hi. I’ve just heard your interview on the Richie Allen Show. I don’t know if you’ve heard of GCMAF. It is an immune treatment which has found to have been to have good results with autistic people. Here is a link to a pub med search: https://www.ncbi.nlm.nih.gov/pubmed/?term=gcmaf+autism

    David Noakes who has been in my view unfairly jailed for marketing GCMAF in the UK as it truly is the cure for cancer, talks about it here; https://www.youtube.com/watch?v=6NQqnoHI_1o&list=PLnygUuo0ff9s_vimIr_48HLBKorEiwVqH&index=4&t=0s

    Hope this helps.

    Reply

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