The Mental Capacity Act and the Obliteration of Family Life for Adult Children - PART 1 OF 4

"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!

 It's been such a long time since I blogged and I've really missed everybody.

Thank you for all the emails enquiringly about my absence, like many of you, I have had health issues as well as dealing with an unexpected amount of bureaucracy, and looking after my lovely daughter, Marie. 

As many of you know Marie is an adult child with a severe learning disability, quadriplegia, scoliosis, epilepsy, dysphagia (swallowing probems and could not be left alone when eating or drinking) and other issues that require 24 hour care. Her speech is very limited and she has no sense of danger. 

Me and Marie

Marie's early childhood was mostly spent isolated a a room on her own where she spent most of the day on the floor banging her head until she either fell asleep or knocked herself out. She screamed and screeched but the nuns ignored and kept her door closed. To this day unless strategies are in place to help her she will still screech and for many reasons: if she's angry or upset, bored, frustration in the midst of a group unable to verbally express herself in order to gain an adult's attention. This behaviour does not happen at home because of the strategies and quick intervention that are in place but anywhere else Marie can quickly regress and her old habits surface.

The screeching she can switch on and off, but Marie is also on the spectrum and can have the occasional meltdown, usually when she's had lots of fun and been over stimulated. That can be very upsetting to witness, when the tears roll down her face and the roars come from the pit of her stomach, then I just have to remain close by with reassurance until she rides the storm.

 The problem started just before my knee replacement operation in May. Up until this time I received 18 hours a week support for Marie, but had great difficulty finding any respite facility that catered for Marie's complex needs. She'd had a few short stays in a charitable residential facility, but because she screeched and screamed when her 1-1 assigned carer put her to bed, afraid of upsetting the other 5 permanent residents, the carer got Marie out of bed and let her sleep on the leather couch all night in the sitting room, where her carer also sat in the company of other permanent night staff. I used to cry at the thoughts of Marie sleeping on a couch like some waif and stray. If she slept on the couch at home no doubt she's have been taken into care. I didn't understand why the 1-1 carer couldn't sit in Marie's bedroom all night, at least Marie would have had a decent night's sleep.

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. 

Unfortunately I had to cancel my first total knee replacement op. Not only was the respite facility booked up, I strongly object to Marie returning there to sleep on a couch.

In desperation there was a last minute offer of extra help (arranging 24 hour agency care) at home, which I declined, as Marie presents behaviour that challenges people and I knew with all these strangers coming into our home that I would constantly have to intervene, which would interfere with my own recovery time.

In the end a place was found through Shared Lives Scheme run by PSS Enabled in Liverpool. Marie was booked in for a month in a private house in the carer of 2 sisters providing 24 hour 1-1 care.

With Marie's understanding being so limited she had no concept of my operation or why she would be staying in someone else's house and that was kind of sad.

Everywhere Marie goes she has her black file with her person centred plan, which was particularly handy when I went in for my operation. There was no time for the usual slow introductions to respite, and after two one night a week stays, she went there for a month.

The carers said they found file info very helpful and were able to avoid or quickly intervene when Marie began to screech, and of course as she familiarised herself with her surroundings and got to know the carers, she was less anxious and began to relax. 

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.

A week after I met new SW she went to assess Marie. It was 9.15 in the morning, Marie was dressed, had just had breakfast and her medication, and with her shoes on, she must have thought she was about to go out. Marie became very agitated and confused, and within minutes she began to scream and screech and go stiff.

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.  

However after some years it became apparent that Marie's needs were not being met. She became painfully thin and staff told me they no longer took her out in the community because of her screaming and screeching and plonking down on the ground (needing wheelchair support!) and refusing to walk. 

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. 

It was like teaching a baby all over again by being consistent with lots of love and assurance.  

Two years after Marie returned home I had an awful experience. I went away for 2 nights and left Marie in the care of an agency worker whose firm claimed to specialise in Learning disability. Agency Worker had already spent a night with us when I was at home and also many days getting to know Marie and reading through her file.  While I was away for 2 days Agency Worker would be relieved during the day by Melanie, Marie's PA. 

The first night all seemed to go well but the 2nd night when Agency Worker assisted Marie to bed at 10pm Marie objected loudly with her screeching. She (Agency Worker) then rang her On Call and after contacting them a second time saying she felt threatened (from 5ft mild quadriplegic Marie) she was advised to dial 999, which she did, and brought the Police to the house. 

Enjoying home life

There the Police sat with Agency Worker and Marie (to protect Agency Worker) until a replacement staff arrived just after midnight. The Police then drove Agency worker home.
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.

So now I'm panicking a bit because I had no idea this assessment was taking place and felt a sense of alarm knowing Marie could be misrepresented if her behaviour (that challenges) is misunderstood. By this time Marie was coming home for one night a week and I felt she should have been assessed at home in her familiar surroundings rather than in a strange place with people who hardly knew her.

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.

She replied informing me that she had made me aware of her visit. She wanted the assessment completed because it was her duty to keep Marie safe and as Marie's Social Worker she was acting in her 'Best interest'. I felt slightly alarmed! How can a stranger bring in another stranger to assess Marie, and exclude the family? What information will they base their assessment on? 
This was not a very good start and I had a bad feeling about her.

She also said that on going through Marie's file she could not find my legal status to Marie and would I please have the necessary papers for her to check when she visited me in two weeks time. I was still hobbling around on crutches and on heavy painkillers, and going through papers from decades ago was the last thing I needed to deal with.

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 Clinical Psychologist, who spent 2 hours with Marie and I, had no concerns about Marie's reported 'behaviour' after learning about her past and seeing how relaxed she was in her home environment.

In the meantime weeks are passing us by and still no sign of a new care package even though I had filled in the Care Grid the Social worker sent. 
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.

Settling back home after respite

Finally 8 weeks later I was offered an extra 7 hours support a week - for one month only - to help Marie and I to settle down at home - and 4 months after I first applied. By this time the application for NHS funding had been withdrawn.

I was baffled and so worn dowm by everything. Marie, I could cope with, but the bureaucracy had been a nightmare. What a complete waste of my supposedly recovery time and energy it had all been.

I was very upset at the way the assessment had been handled. I felt the S W had worked alone and had not felt the need to consult me about anything. I was a nobody and that attitude was detrimental to Marie's wellbeing because the best possible outcome would be if we worked together.  

I wanted to know what had happened and where we went wrong. I wanted to read through the whole assessment so we could all learn from it.

First I rang Careline for advice on how to access Marie's Social Services file under the Freedom of Information Act, after all it contained information about me as much as Marie and I harboured a great sense of entitlement to read these notes. I have never had a problem with the Social Workers before so I wasn't looking for any revelations, just the assessment notes. 
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. 

Still pondering about how to deal with this Social Worker, not sure how to respond to her email, I receive 2 registered letters in the post. I have to admit my heart sank when I signed for them, I knew it wouldn't be good news.

The first letter stated that since I had ignored her emails (since I'd seen the swearing and was unsure what to do) Social Worker told me in no uncertain terms that she would be visiting Marie in a week’s time to assess her after the extra 28 hours respite and to see how Marie was getting on in the community, which seemed quite bizarre. I was also instructed to have Marie and her PA present.

The second letter informed me that .....

"I am aware that you made a request on 8^th October 2015, to access records in relation to Marie (Surname).

Under the Mental Capacity Act (2005), I have a duty to appoint an Independent Mental Capacity Advocate (IMCA), for Marie. This person will provide an independent perspective for Marie as I am obliged to undertake a Mental Capacity Assessment and a Best Interest Decision to determine that the Local Authority responds to your requests in Marie’s Best Interests.

I will make a referral for the IMCA today."

I was shocked at the steps that had been taken.

So here am I still recovering from a serious operation, where up until now I have not had much peace and rest, looking after a severely disabled daughter, being put forward for further months of assessments and just because I had asked to see Marie’s file.  

OK it would be Marie that was being assessed, but I would have to facilitate this long drawn out process that Marie would have no understanding of. 
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. 

@copyright Michelle Daly's Warrior Mums - illustrated by Simon Goodway

Over the weekend I mulled over this miserable situation and read up about the role of an IMCA which states: 

 ‘The role of the IMCA is to represent and support people when critical decisions are going to be made on their behalf about provision of health or social care services. This is vital where someone is unable to make decisions themselves and do not have family or friends who could represent them.’

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.

Woman's Own Magazine 1972

Marie may not have been born to me but I have played the role of her mother since I was 16, 45 years ago - and she does have a brother and sister, and lots of friends. 

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.

At the same time The Team Leader, promised me a new Social Worker to assess for a new Care Package (applied for last June) and a Carers Assessment, to take place some time in January. Today, mid Febuary and there's been no sight nor sign of a new Social Worker and no word from anybody. 

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. 

I received copie of emails I already had copies of. 

There was a mention of the (underlying threatening) letters sent to me, but not that they were sent by registered post.

Not a mention of the complaint I made or the (empty) promise of new Care Package in January.

But I did read one thing that utterly shocked me.

On the day I met this Social Worker she admired the tattooo 'Believe' on my hand - and she stood up to show me hers. The conversation was pleasant enough but now I have read in the FOI that she returned to the office that day and wrote:

"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 half an hour after meeting me, and 2 weeks before meeting Marie, she has written this untruth about me in Marie's notes, never suspecting I would ever read what she has written. 

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? 

If GP has not been contacted then her false statement about witnessing me having an 'absence' should be removed from Marie's file where all and sundry are allowed to read it in its entirety, all and sundry, that is, except for me.  


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@copyright No part of this blog can be printed without the author's permission

Want more information on the Mental Capacity Act?

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.