30 November 2016

City Council Tender Adults with a Learning Disability to the Cheapest Bidder

The hypocrisy of the 2014 Care Act and all those who pretend it makes sense..

The new social worker, the second in two months, looked from Marie to me. Marie had been assessed and offered a permanent place in the respite home she had visited over a five year period, originally introduced through Liverpool City Council. It had been 2 and 1/2 months since we had applied and six weeks since assessment had been completed so I was expecting this new social worker to come with good news. Instead, he said, 'If we give you more support could she continue to live at home?' I was taken aback. I'd been asking for more support for years, but now it was too late. Years of struggling had ruined my health and I told him so.
He nodded towards Marie. 'You won't get your choice of home because she's going to be offered for tender on the care portal.' He stated.
Now I was confused.
'Offered for tender on the care portal?' I repeated the words hanging in the air.
'Care providers will bid for her.'
Call me stupid but I still didn't understand.
'What do you mean, bid for her? I asked him.
'She'll be put out to tender and we'll see what offers come in. We usually take the lowest' he laughed.
I went to speak but couldn't get the words out. I had never heard anything like it in my life. It was beyond my realm of perception. I just could not grasp what he was saying. 'You don't mean advertise her on the internet, do you?' I asked expecting him to maybe laugh and tell me not to be so daft but instead he nodded.
I glanced over at Marie, innocent, trusting, vulnerable Marie and still in disbelief I said, 'You don't mean like, "51 year-old woman with a severe learning disability looking for a home..?" I trailed.

'Yeah, that's right', he answered. 
I was dumbstruck. His mouth continued to move but I couldn't hear the words.
I looked at Marie's PA who was sitting beside me with eyes filled with tears, mirroring exactly what I felt. And I thought,  

Oh my God....Oh my God.... how has this ever been allowed to happen? How can these vulnerable people that we love so much be treated in such a cruel way? Their care for sale on the internet!

I have waited and waited, coping with poor health and a reluctance to speak out in case it jeopardised Marie's application for residential care, but our treatment by Liverpool City Council has been appalling and it's time to share our story. Having said that, I must apologise in advance to all the decent social workers we have met in Liverpool over the years and there are many of them, because what is happening today is no reflection on the support we had from you in better times.. 
Where do I start? Well I suppose a good place would be to thank all those who've contacted me this last 12 months and then to apologise to you for my silence. Believe me your messages were truly appreciated.  
I don't like talking about my health and I think that's true of most parents. We only put ourselves 'out there' when all else has failed and there is nowhere else to go. I don't know any parents who enjoy being in the public eye, it really is our last resort.  

In the beginning of the year I was struck down with the most excruciating pain and stiffness throughout my body. I was unable to raise my arms above my waist or move my head from side to side, suffered pain in my thighs, wrists, elbows, upper arms and shoulders and I shuffled around the house like a 90 year-old woman.  
Most days I couldn't even raise my arms to comb my hair and it made me think a lot about other carers and how they cope. Thousands of people behind closed doors across Britain being robbed of their health as they struggle to care for their loved ones despite their own failing health. For years I had coped with Diabetes, high blood pressure and cholestral, stage 3 chronic kidney disease, arthritis in my hands requiring cortisone injections in my thumbs - and now this. I was being run into the ground.
 Every day was agonising and I struggled to care for Marie. Fogged with pain patches and any other pain medication to hand, nothing but nothing aleviated the pain and when I lay in bed at night my body seemed to lock making any slight movement to cause agonising pain that left me in tears. Not knowing what was wrong with me during those dark hours I wondered if I might die during the night and what would happen to Marie. It was a very scarey time.
If I was still for more than 10 minutes day or night, although the night time was far worse, it meant my arms would lock and my body would stiffen. I remember one morning lying in bed unable to move watching the minutes tick by on the clock 5 - 10 - 15 - 20 and still I lay there listening to Marie trying to call me. I eventually managed to shuffle my feet across the bed until they rested on the floor, groaning with  pain as I slowly raised my torso in an effort to sit up. The seering pain as I tried to prize my arms from my sides was like a knife slicing through me and made me feel sick. I'd look at my clothes and knowing it was too painful to get dressed I'd go into Marie's room to start my long day. I'd wonder how I was going to cope silently praying for the strength to do the best I can. I'd kiss Marie good morning and help her out of bed. Even holding her hand to support her walking was agonising for me so I had to make sure I wore my hand and arm splints to support my weak and painful muscles. After months of agony when I could no longer face going to bed, I began to spend my nights sitting in a chair, which made getting up to see to Marie in the mornings a bit easier. It was less painful to stand from a chair, though still very painful, than trying to get out of bed. 
We still had 18 hours support a week usually 10-4 over three days, but it's a drop in the ocean because of the other 150 hours we spend alone. It was too painful for me to drive and I couldn't (and still can't) push Marie's wheelchair outside. We were isolated. I lost the motivation to read or write although I couldn't write if I wanted to, stopped returning phone calls or answering emails, in fact some days I wasn't well enough to read them. I felt totally cut off and lost all sense of identity and the worst feeling of all is that feeling that nobody cares. 
I used to ask myself how have we got to this stage? Wasn't life supposed to get easier as we got older? I must have been saving the government thousands yet here we now were both of us disabled with very little support.

To my great relief and after months of nobody knowing what was wrong with me, I was finally diagnosed with Polymyalgia Rheumatica. (Polymyalgia rheumatica, or PMR, is an autoimmune disease that causes widespread muscle pain and stiffness in the major joints.) I was put on steroids and told I will need to take them for at least the next two years and probably for the rest of my life. Naturally I was glad of the diagnosis and being able to get some relief from my pain but to think I was saddled with this for years and would have to take high doses of steroids was very disheartening. I have a lot of conditions to deal with. PMR has left my muscles weak and there will likely be flare-ups. I suffer from fatigue but have no real time to rest. I get up at 7 and go to bed after Marie at 11 or 11.30. Sometimes I feel like an old cart horse that will just carry on until it drops..
If I'd have been given the new care package I asked for last year after my knee replacement operation, allowing a bit more time to myself and being able to rest, I'd be a different person today.
So why didn't I ask for help? 
I already had asked for help in a way. I was still waiting for the carers assessment and new care package I had requested almost a year ago. I wouldn't however go so far as to ask for emergency care, though, because Marie could easilly have been mis-placed somewhere- anywhere and never come home again.  
We carers have learnt how to choose our battles. Most of us know that any request for help embroils us in a chain of assessments that bring nothing but added stress and rarely with a positive result. All it does is sap the time and energy we don't have to spare, exacerbating our situation.
My health was deteriorating fast but if Adult Services cannot provide an elected respite facility that will meet Marie's challenging behaviour then God knows where will she end up in an emergency situation?
We've all  heard too many tragic stories of people with special needs being misplaced in treatment units under the guise of assessment - and being stuck there under the mental health act. Forgotten, neglected, over-medicated, denied family contact. Families having no redress, intimidated into silence by the Court of Protection. The Mental Capacity Act and 'Best Interest' shoved under their noses as their identity as a parent pales into insignificance. Entangling our sons and daughters in legal loopholes, locking them up and taking away their freedom when they have committed no crime. 
No thank you - emergency care was not an option.  
But after all we'd been through - and survived, this last experience was different and made me realise I had no choice but to make long term plans for Marie's future care. I was 63 and she was 51. It was't fair to Marie. This would be Marie's second venture into independent (of family) living. Her first placement had been successful for a good few years but unfortunately the facility changed and could no longer meet her needs so she came back home. 

When you are down to nothing, God is up to something.

I realised I would have to set about making my own enquiries. Firstly I rang the only place Marie had loved going to stay, the only place she had ever gone to bed if only for an hour or two at a time and the only place I could ever envisage her living happily with staff she had grown to love. Marie was initially introduced to this Home by Liverpool City Council eight years earlier. It was situated outside of Liverpool and one of their preferred providers.
When I first spoke to the care home staff I asked if they could offer ANY respite. At the time I could barely stand and still not knowing what was wrong with me, thought I might recover after a couple of days rest. (WRONG!) Unfortunately the home are registered as a permanent Home and offering Marie short term care was a service they still could no longer provide. Oh well, I thought, God loves a tryer. They then went on to tell me they only had one long term vacancy. That was even better and the last thing I expected to hear. I didn't hesitate, I mean why would I when we were in such a desperate situation. It can be months even years before vacancies arise in these place and how lucky was I to telephone just as one had occurred?
I told them how I wasn't well and that I didn't think I could look after Marie for much longer. I asked them to consider the bed for her. Knowing Marie the way they did I knew they would help if they could. All I could do was wait and pray.
A few weeks later I took Marie to visit them. Bearing in mind she hadn't been there for three years, as soon as we approached the building she was shouting with excitement and when her favourite person, the Manager, opened the door, Marie's face was a picture. There was no doubt about it - here was the place she wanted to be. 
So as soon as we got back I contacted Adult Services for Marie to be assessed. I also contacted Maria Eagle, our local MP, explaining about Marie's background and my poor health and asking her if she would support me with the application. (You don't get to this age without anticipating problems!) She immediately wrote to Adult Services recommending they secure Marie's place in the home. 

For those who don't know our background briefly - I met Marie when I was 16 and she was 5. She had a severe learning disability, cerebral palsy and epilepsy. Being the only handicapped child in a children's home resulted in Marie being left on her cot all day or locked in the Pram storage room on her own where she would scream and screech and crash her head into the floor until she fell asleep. 

When the home closed at the end of that year Marie was sent to live in a large hospital and because of my interest in her I was offered a job as a cadet nurse. But the hospital was large and impersonal and no place for a child to grow up in so after several months I left, promising myself to do all I could to get Marie out of there too.
I traced Marie's mother who took the brave decision to make me her daughter's legal guardian so I could maybe bring Marie out of hospital. 

The following year the Sunday People newspaper, on hearing of my relationship with Marie through my brother in law, offered to serialise our story over a 2 week period. The £300 fee, (don't laugh!) which was a lot in those days, enabled me to bring Marie home to live with me altogether.
Michelle Daly and Marie - Warrior Mums blog
The week our story was featured in the Sunday People, my brother brought me a poster home that had been featured on billboards around the UK. It was great to know so many people cared, a far cry from today's attitude towards vulnerable people.
My sister and her husband let us to stay in their dilapidated old schoolhouse in Lincolnshire. With only an outside toilet and a cold water tap it was still heaven. To me the only thing that mattered was that Marie was loved and cared for like any other child. She was still in nappies and I used to boil the water in a pan on the stove every night and bathe her in an old tin bath. 
And now here I was 43 years later trying to secure her future because of my ailing health.

Our new social worker whom I shall call Mr Jones, was like a breath of fresh air. 
He was so understanding of our situation. His overall experience with learning disability, his insite and compassiom reminded me of all we had lost over the years. Listening to him made me hopeful for the future. 
The assessment had been thorough over the next four weeks with hours spent on the Care Plan, the Mental Capacity test and Best Interest forms completed. 
I had even (reluctantly) filled out a 24 page Carers Assessment because Mr Jones did not want the application rejected had one been required to complete the assessment for residential care. (This was the 2nd Carers assessment I had filled out in a year with the original one not followed through.) 
Unfortunately Marie's treatment in the children's home had left her so damaged that to this day she will scream and screech when she is anxious. She is mainly non verbal and has no sense of time or danger. This has created problems over the years and difficulty in finding suitable respite facilities. The intervention strategies I have in place at home, no response to screeching, encouraging Marie to express herself in other ways avoids this kind of behaviour. Some staff in respite cannot be bothered with the consistancy required to manage Marie's disruptive behaviour and the placement breaks down. Marie is also on the autistic spectrum.
Community care for Marie in some two up two down house would be disastrous as she needs a more structured support. Community care would require at least 2-1 staffing 24/7 and would even be more costly than the 1-1 place she has been offered in the residential care home. 
Mr Jones understood this and thought it was in Marie's best interest to take up residence in the care home. He marked the application as urgent, due to Marie's need for maximum care and my poor health and fatigue. He had applied to the home for costing and all was complete. I was told I'd have a decision in a couple of weeks so every day I was hopeful good news would arrive.  
At times I felt quite teary eyed at the thoughts of Marie leaving home. What does she take and what does she leave behind. The hardest part is not being able to explain because she wouldn't understand. At the same time I was thankful that she had been offered a place in a home she was familiar with, with staff who sang from the same hymn sheet and who had grown to know and love Marie over the years.  She had always needed a 1-1 staff 24/7 (and still does) otherwise placement would break down.

On top of everything else I had recently suffered from pains in my chest which my GP suspected was angina. The heart specialist he sent me to had booked me into hospital for an angiagram and in the meantime had supplied me with beetablockers and a glyceral spray for under my tongue. Yet another string to add to my bow.
But life went on and I was busy filling out the reasons why 51 year-old Marie, this adult with a mental age of a 19  month-old, could not attend the jury duty she had been called to and then completing a 20 page return to work document for her. Both organisations hostile and menacing with threats of fines and benefits stopped if forms are not completed on time. Sometimes I think the government forget we do not work for them, our full time job is doing the caring and not filling out the unecessary paperwork they regularly bombard us with.
Just to add more stress unfortunately at the end of August Mr Jones left the employment of Liverpool Adult Services after only one month. I was sad to see him go and so thankful it was he who had done the assessment.  
And so we waited and in September I contacted our MP concerned that Marie might lose the bed if there was any further delay. She was assured by Director of Adult Services that costing had been received and a newly appointed social worker, who was processing the application, would be out to see us the following week. I thought that was rather strange because Mr Jones had already processed the application. Maybe this new social worker was coming to deliver the good news personally. All I could do was wait and see. This particular social worker, due at 1.30 arrived at 12 instead. That alone should have been a warning sign that he had no consideration for us - and that was when I learnt about the tendering process, three months after I had applied for residential care for Marie.
After the social worker left Marie's PA cried for the rest of that afternoon. She couldn't get over what he told us and neither could I. We were devastated not only at the thoughts of Marie being offered for tender on the internet but other vulnerable people. Property and cattle go to the highest bidder and the most vulnerable in our society, whom we love and want to protect are for sale to the lowest bidder.
For the next few days I felt emotionally battered. I was absolutely devastated every time I thought of Marie being put up for tender on the internet. It's so difficult when you're not in good health. I didn't know which way to turn. I couldn't talk about it because I was still trying to process what he had told me. Thank God Marie didn't understand his heartless delivery; a delivery which demonstrated that for the most vulnerable in our society it is and always has been.. NO VOICE NO CHOICE.
I was so exhausted with it all. To think I had struggled to look after Marie all these years; to give her a loving home and secure life and after all she had been through in her early years, to end up being advertised on the internet for someone to look after her was absolutely outrageous.
Again I contacted our MP Maria Eagle, telling her about the proposal to involve Marie in the tendering process when all along we had been lead to believe the application had been specifically for a place in the home. I had also learnt that day from the social worker that his manager had rejected Mr Jone's application for Marie saying it had been incomplete. She had rejected it after he had left their employment six weeks ago and had not bothered to let me know. So all of this time when my mixed emotions are trying to deal with the coming changes in our lives had all been in vain because the application had been abandoned. I was so tired of it all.
How can a Social worker look me in the eye and talk about Marie as if she was some kind of commodity? Where is their compassion and respect for Marie and her family?
I was recently told:
 "The procedure for securing a long-term placement would involve a service tendering process being completed detailing Marie's care needs, and an opportunity for all care providers to express if they are able to meet such care needs. Again, this is to promote choice for Marie's as laid out under the Care Act 2014."
HELLO!! How can these people spout out this utter rubbish that makes no sense? It's already been established in this assessment process that Marie lacks the capacity to choose or make any kind of decision so let's be real about all this. Why would she be offered for tender if she is unable to participate in process or indeed give her permission for personal details to be uploaded onto care portal?
Isn't this unnecessary process really about giving all care providers an opportunity to cash in; to allow all a fair crack of the whip to make money from the vulnerable and the voiceless. Even the computer software company who design these 'care' portals must be laughing all the way to the bank. 
Learning disability is where the new money is!

Nobody cares about what Marie wants except the people who love her - her family. 
And what gives them the right to think that after all Marie has been through that they can just dump her in a home full of strangers? To think she began her days locked up in a room in a children's home because she was the only handicapped child that nobody wanted and ends them on an internet portal put out to tender for strangers to bid for her care.

So now we continue to wait and wait. The stress continues to take its toll on my body. The social worker who came to see us on October 4th and who promised to get back in touch with me in a couple of days has not been heard of since. 
The bed for Marie in the residential care home has been sitting empty since July and it 1st December tomorrow. Ask Adult Services why the delay and they will give you a hundred excuses but no satisfactory answer as to why it has taken over four months to deal with an application for residential care or why they want to put Marie up for tender in order to give her a choice of care when she lacks the capacity to choose or take part in any of the tendering process. 
Who cares about the carers?

I told them in the beginning how ill I was, how I wanted to see Marie safe, settled and happy. She does have a right to be happy, doesn't she? Don't I have a right too to peace of mind after caring for her all these years.
I have fought for Marie's rights since I was 16 and will continue to do so as long as she needs me. I want her to leave this house; go from one loving home to another in a calm and dignified way, not in a crisis when I have taken ill in the middle of the night. I expect social workers and any officials involved in her life to treat her with compassion, acknowledge her family ties and respect them.
To even consider Marie or any other vulnerable person who lacks capacity for tender on the internet is immoral and should be banned altogether. The social worker told me they use the internet portasl because they don't have time to be looking for individual residential care places.
What is the point in wasting all this time when Marie has a perfectly suitable place to go and live. Past experience tells us the Home is a place she loves. We can only go on what we see; how else would we know? And now they are telling me they want to send her off into an unknown future like some poor war-torn refugee. I have already told them Marie will no be going up for tender!
I asked why Marie cannot go to the home she prefers and was told if they did that for her they would have to do it for everybody or they would be accused of favouritism which I think is absolutely disgraceful.

I look upon Marie as a teacher. She has taught me so much about accepting and respecting people's individuality and how to enjoy the simple things in life. She helped me raise the plight of children living in long stay hospitals in the 70's and has brought to light many other issues. Now through Marie I have learned about the appalling tendering process. I am sure many people were already aware of it but there will be many others that weren't. Common sense is needed to put this right.

Let Marie live where she's happiest, where her bed is waiting, and stop treating her like she's one of a herd of cattle at a Mart. You wouldn't want your own family treated this way would you?

UPDATE 1st December

This post only went up yesterday 30th November and this afternoon I had a phone call from the social worker to tell me Marie's assessment was completed, the social worker I haven't heard from since October. He also informed me that Marie was uploaded onto the internet portal on Tuesday - two days before I wrote this post. I was stunned. How sad that I had no idea..

Apparently Marie will be advertised for 7 days and if there are no bids for her she will be advertised for a further 7. How could anybody not cry at such cruelty?
They will bring the best 3 offer for us to decide. Well I am afraid they are wasting their time because Marie won't be going to any of them..

I am beyond shocked and heartbroken. 

What kind of world are we living in to treat vulnerable people and their families in such a way?


4th December 2nd update

I was so upset when I finished last update, so much was left in the air. It took me a couple of days to recover from the shock and now I am back on my feet again. I was gasping for air after the phone call from social worker telling me Marie had been offered for tender 2 days earlier. In that split second the social worker had stripped Marie of the wonderful person she is and effectively reduced her to a Lot number.
During our heated exchange of words the social worker told me I only heard what I wanted to hear. I was so distraught I could barely get my breath. I rang my friend but was sobbing so much I couldn't get the words out, so devastated that anybody could treat Marie in this way. I could hear her pleading with me to calm down, afraid I was going to have a heart attack but I was too shocked.
The sad thing is I never cry in front of Marie and was glad I'd taken the phone call in another room. After a while when I was composed enough to go into her she had her hands over her face muttering incoherently and pretending to cry. This is the kind of misery families are having to deal with today. Poor Marie must have heard me crying but thank God she didn't know the reason why.

It feels like grief and it is a kind of grief for all that we have lost in this country. Compassion and empathy has died and so has kindness and integrity and respect for family ties, too. Even the Church seems to forget that vulnerable people are all God's children and have abandoned the families they once would have carried like footprints in the sand.

Marie knows how loved she is and trusts me implicitly, so much so that she would probably walk beside me through hot coals as long as we held hands. So why would I take her by the hand and like a pair of paupers go in search of somewhere, anywhere, for her to live? Only some kind of Stepford wife would participate in a process they disagreed with and a Stepford wife I am not! I won't play any part in it.

Let them take Marie and introduce her themselves and see how far they get. I am sure Marie will enjoy the day out. Maybe they'll stop in McDonalds for a 'happy' meal? I wonder how honest they have been about her needs because for the placement to be successful it's imperative for Marie to have a 1-1 24/7. Not a shared wake and watch or sleep - that's been tried, tested and failed, but her own round the clock carer.

Isn't it all so silly and such a waste of everybody's time and money when you think we have already found a home that suits her needs and has been available for her since July? Unfortunately Liverpool City Council excluded the Care Home from the tendering process so I think that just about sums them up.

Over 25,000 people have read our story and it has shocked and upset many. 

Why weren't we all made aware of the tendering process and why are people from all areas of the care sector shocked?

13th December

This afternoon our new social worker arrived with a colleague bringing me the good news that Marie was no longer on the care portal and would be going to the home that she loves.

What a lovely ending to an absolutely terrible year.

There is no way I can help Marie to understand the great future she is going to have until she literally walks through the door of the home she is so familiar with and sees it for herself.  

No parent should accept the appalling tendering process and we must all do what we can to have it abolished. Share your stories, stick together and support each other even when times are good because you never know when you might need help.

I have made a request under FOI to 19 authorities across the UK to establish how many adults with a learning disability they have successfully placed in residential care through the tendering process since April 2014 and how many of those successfully placed lack capacity. Maybe then we will get a clear picture of the numbers of vulnerable people have been sold to bidders like Ebay items. 

I will finish this long saga by wishing everybody a Merry Christmas. I am smiling from ear to ear. My wishes have come true. I hope yours do too. 

I would like to thank all my Twitter and Facebook friends for their support, especially the learning disability nurse community, many of them firm friends, those who have left comments on my post and everybody else that has sent me messages of support.

10 February 2016

The Mental Capacity Act and the Obliteration of Family Life for Adult Children

"How can a Social Worker, with no moral compass, think it's OK to come into our home and lay down the Law?"

Michelle Daly and Marie @copyright Paul Cooper Photographer
@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 8th 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. 

Michelle Daly's Warrior Mums
@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.
Michelle Daly's Warrior Mums - Womans Own Magazine 1972
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...

Michelle Daly's Warrior Mums photo Sunday People Newspaper
Sunday People Newspaper 1997

Update below a week after post was published.

Michelle Daly's Warrior Mums @copyright Paul Cooper Photographer
@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.  


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.