"How can a Social Worker, with no moral compass, think it's OK to come into our home and lay down the Law?"
@copyright Paul Cooper Photographer |
I have to confess, this has been the most trying year of my life!
Me and Marie |
When I took Marie for her week's stay the carers asked me if it was the first time Marie had ever been away from home and if she was 'like that' all night. I told them of our strict bedtime routine (Her black file enclosing her person centred plan had accompanied her.) and how Marie knew there was no point in screeching. I asked if they persevered with her loud obections she might settle down. I was then told it was alright for me because I only had the one at home, they had five others to think about. I didn't know whether to laugh or cry.
This is where it would be an advantage to both Marie and care staff to involve Community Learning Disability Nurses. They could have visited Marie during her stay, and advised care staff, making for a much more pleasant experience all round, after all they have the 3 year's training.
With Marie's bedtime routine now broken, she was extra hard work at home. Days and nights were switched around and I had very little rest for those first few weeks, detrimental to my arthritic knee, which I was due to have replaced.
As it turned out, a month's respite in terms of my recovery was no time at all, and until my request for a new care package, an increase from our 18 hours a week was dealt with, Marie could not come back home. Unfortunately our lovely Social Worker of 3 years was leaving and we were allocated another. She was a fairly newly qualified middle aged Agency Social Worker, and when she came to introduce herself I was still using crutches and going to the hospital for physio - and probably quite depressed about the future when I'd received such little support leading up to my op when I had barely been able to walk. It also gave me a lot of time to reflect on the past, having such little support and constant battles for respite, I didn't feel I could go back to that way of life. I was older and less able but Marie loved living at home and was quite entitled to do so. I was relieved when she started coming home for one night a week, but sad that she developedhad Alapecia. I was worried about her.
Years before when we spent time living in Ireland, I followed the path of many parents and accepted the placement Marie was offered only 20 miles from our home. It was ideal, and when we returned to the UK, Marie seemed so settled, the decision was made for her to remain in the facility- as one of the senior staff said to me - 'We're her family now', so I contented myself with visits and taking Marie on holiday.
I had never prayed so hard and after many sleepless nights, I felt I had no option but to bring Marie home. It was such a big decision that I cried the night before I went to collect her. I was scared. But the next day in Ireland as I watched Marie holding her sister, Anna's hand, climbing one slow step at a time up the steps to the plane to fly back home, I knew I'd made the right decision.
So you see we've been down that road of independence and Marie came home half dead.
Coming back home. Age 42 |
She was like a lost soul and needed a lot of love and care, she even shared my bed for the first few weeks, then we both slept in single beds in her room until I felt she was ready to sleep alone, enabling me to sleep in my own room.
Enjoying home life |
Nobody rang to inform me of the crisis either during or afterwards, it was Melanie who rang the next day when she went to the house to care for Marie only to find a stranger sitting with her.
So on this morning of the Social Worker's assessment in respite, when there was no sign of Marie quietening down, the SW, who was meeting Marie for the first time, remarked to the other adults that she found Marie's behaviour very concerning.
I emailed the Social Worker the next day expressing my disappointment that she hadn't informed me of her intention to carry out the assessment. I explained I was used to working closely with Social Workers and kept 'in the loop' so to speak. I also asked her to hold off on an assessment she was arranging and to please wait until Marie was at home during her one day a week.
This was not a very good start and I had a bad feeling about her.
It kind of went downhill from there. SW wanted the new care package funded through NHS and arranged for lots of assessments. One week we had an OT, Moving and Handling and a Clinical psychologist, coming to the house. All were very nice, but there were no specific problems to address. It was all part and parcel of who Marie is and the only person who couldn't seem to accept it was the SW who seemed to think Marie might be a danger to herself and others.
The District Nurse who was contacted to fill out the Mental Health form spoke with me on the phone and told me she did not think Marie would qualify for NHS funding because she was manageable at home and her 'issues' the SW had described, were all part of Marie's severe LD. She said she would ring SW and tell her.
Soon Marie was coming home for 2 or 3 nights a week. I was still using one crutch and poor Marie still had a bald patch on the crown of her head.
She needed to come home for good but the SW had booked her into respite for a much longer period because her assessments were taking longer than she expected. She wasn't happy with the outcome of some assessments and suggested having some of them redone.
I had heard all kinds of horror stories of people going to respite and then prevented from returning home, so when Marie came home with insect bites on her arm which had turned into secondary infections, requiring a course of Penicillin and antihistamine cream and tablets I decided not to send her back. It was no reflection on the carers, they were very good with Marie but they also felt she was fretting and it was time for her to go home. We would have to manage as best we could.
Careline advised to contact Marie's Social worker with this request, so I did. She replied telling me she had submitted my request to the Records Office. I thanked her.
So there we were settling back into our companionable life with the help of Marie's 18 hour a week PA and the help of friends when another parent using Adult Services sent me a link to this Social Worker's Facebook page - and boy was I shocked to read comments like
'Does everybody speak to each other like shit these days or is it just the way they speak to me?'
I scanned down the page and was disgusted to think that this supposedly pillar of the community, who undermined my parental skills as she looked after Marie's 'Best interest' was behaving like this. I mean, was she referring to families she visited, or her colleagues?
The next thing is she emails me to come and assess marie to see how we managed with the one off extra 28 hours. Grrrr another assessment.
How could they put me through all this now?
I didn't know how much more I could cope with.
Marie's PA Ann Rimmer, who has become a great family friend, was with us at the time, and when I handed her the letters she read them and began to cry. Such is the misery that's brought into UK homes every day to parents who are doing their best to survive.
How insulting!
To me this was an abuse of power and totally unnecessary.
And how can a Social Worker with no moral compass think it's OK to come into our home and lay down the Law.
I was now backed into a corner and had no option but to put in a complaint about her and give the reason I had ignored her email.
In my complaint last October I explained how shocked I was at receiving the registered letters referring Marie for an IMCA and an MCA, without any discussion. I stated I would have withdrawn my application to access Marie's file had I known they were going to take such drastic steps. I explained my concerns about Social Worker's conduct and asked for their assurance that scheduled meeting with her would be cancelled. I also asked for both IMCA and MCA to be withdrawn.
The sad fact is it would make no difference if Marie had been born to me. I still couldn't access her notes because the Government have removed the power from parents to make any decisions about their special needs child once they reach the age of 18.
The MCA is designed to gag and render parents and family carers powerless, but it's OK for us to look after our (often) severely disabled adult child 24 hours a day, to cook, clean, launder, take them to hospital appointments, collect prescriptions, administer medication, open their post, deal with their finances, plan - and accompany them to recreation activities, keep them safe and healthy by deciding when they need to see their GP, fill out numerous forms, spend hours of frustration dealing with bureaucratic phone calls..
Who not only loves but fights for the rights and standards of care for those with no voice?
The parents and family carers do.
This makes a nonsense of the Mental Capacity Act.
It is wrong wrong wrong.
Wouldn't it be less complicated (cheaper) and more humane for a Clinical Psychologist to establish Marie's competance through an IQ test? How is an advocate qualified to make decisions about Marie's level of understanding? Do they have specific training in psychology or psychiatry?
The way I see it is that those with the most severe LD are open to abuse. Why put a person who clearly lacks capacity, someone that lives at home with plenty of love and support, through the rigmarole of months of visits and (more) assessments, including an invasion of their privacy as all of their case file and medical records can be accessed, when that person has no comprehension of the process they are involved in. The outcome has to be clear well before the assessment is completed and rather than protecting Marie they are exploiting her. Of course the other downside is that advocacy firms compete for contracts by the LA so they are hardly going to oppose any SW decision. Why would they bite the hand that feeds them?
Fortunately after complaint was received Social Worker was immediately removed from our case, but I was not officially informed, nor was the meeting cancelled. The Friday came and went and nobody arrived - and that's how I knew.
The MCA and Advocacy application the Social Worker submitted came to no fruition, although I understand the Advocacy office received Marie’s file but did not appoint an advocate. (How strange that anybody and everybody else can read Marie’s file.)
Last December Team Leader agreed to give me any information from file pertaining to myself, and the FOI office are dealing with it.
I have always had a lot of respect for my LA Social Workers and over the years they really did what they could to support Marie (and myself) as best they could, but there seems to be a serious drop in standards and nobody seems to care.
Nowadays an interview with a SW can seem like interrogation; a sense of Policing, where every word is carefully measured, so much so that we have become afraid to ask for help or support, just in case it's decided that we are not fit to care for our special needs son or daughter and they hurl the MCA at us; the first step of forced removal from the heart of their family. The Family that comes from a place of love and care, who only want the best for their son or daughter, and who up until recently appeared to be well oiled in the wheels of bureaucracy, but not anymore.
I understand Social Workers don't make these Laws even though they have to adhere to them, but there is room for negotiation; room to soften the edges and not make our lives so difficult.
Thank God I brought Marie home.Thank God she had a family to intervene and pick up the pieces when all else failed and she was on a downward spiral.
Today if the same situation arose in the UK 'The Family' would probably not have much say. If the care home staff took my intervention as criticism they would only have to ring Marie's Social Worker and complain about my 'interference' and I would more than likely be banned from making contact under the MCA Act and 'Best Interest' which has happened all too frequently.
No doubt I would have been banned by the Court of Protection from sharing our story. I would have been left powerless and angry at the injustice of it all, and my heart would have been in pieces...
Sunday People Newspaper 1997 |
Update below a week after post was published.
@copyright Paul Cooper Photographer |
The Freedom of Information I applied for on 18th December arrived on 23rd February.
But I did read one thing that utterly shocked me.
"I observed Michelle to have an 'absence' during my visit - informed Team leader and will inform my concerns to GP."
I was sick to the pit of my stomach.
So why did she write it?
Was she just showing off in front of her colleagues? Look how observant I am?
Why didn't she discuss it with me?
Why didn't she tell me she was also going to discuss my 'absence' with her Team Leader and then planned to contact GP about her concerns?
Are Social Workers allowed to take these sneaky steps?
I will certainly find out.
Now I have to ask myself if she followed through and contacted the GP both Marie and I share?
Did she contact him concerning my health or with concerns about Marie being looked after by someone with possible (mini) seizure issues?
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@copyright No part of this blog can be printed without the author's permission
Here is a link to our Warrior Mum and Solicitor Finola Moss's blog and some of her posts.
The Mental Capacity Act in practice -emancipated or insentient?
The Mental Capacity Test- The Fool of Law ?
Enforced Medication of Learning Disabled/ Autistic.