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30 November 2016

Liverpool 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.

13 January 2015

Bungalow 3 Aras Attracta - a Parent's Perspective...

by Michelle Daly 

Footage shot by the RTÉ (National broadcaster in Ireland) Investigations Unit showed workers shouting at elderly residents, dragging and kicking out at them as well as force-feeding one woman. Tragically, due to their disabilities, the residents in this unit, Bungalow 3, at Aras Attracta, Swinford, Co Mayo, are unable to speak and so are completely at the mercy of their carers.

I ask myself who are these cruel people?
How long have they worked at Aras Attracta?
Were they ever on bungalow 4 looking after my daughter?

Aras Attracta was the name of the village complex where my daughter Marie was offered a place and lived from 1990 until 2007, only 20 miles from where we lived. It was built on a twenty acre site, providing residential care for some of the moderate, severe and profoundly handicapped people in the community.
The 140 bed complex was the biggest building project undertaken by the Western Health Board at the time. The accommodation comprises sixteen bungalows, enabling the residents to live in small family groups under the care of learning disability trained nurses.
There was also a thirty-bed unit for the multiply handicapped and an eighteen-bed unit for the older retirement group; and four short term beds offering both clients and their families a welcome break.
The Day Centre offered varied activities with a pool of professional services at hand—physiotherapy department, central assessment clinic, workshop, vocational training unit, and day centre workshop.
Adjoining these facilities was the Recreation Centre with a swimming pool, gymnasium and weight training room.

The previous year we had a family holiday in Ireland and loved it so much decided to move there.  Marie who was 25 at the time, and my other two children who were much younger were delighted with my decision. My grandmother came from Castlebar so I decided to settle in Co Mayo and bought a little cottage. It was 1990, a time when children could no longer safely 'play outside' in the UK and I wanted them to have a more carefree life, which we certainly found in Ireland.

I was so thankful that Aras Attracta was run by learning disability nurses and that Marie would be under the care of professionals. For me, it was a dream-come-true. To set up home only twenty
miles from the most modern Centre in Ireland without even knowing of its existence was quite astonishing.
It was arranged for Marie to travel to Swinford on a daily basis
for two weeks prior to taking up her residential place. This slow
introduction would help to familiarise her with staff and give her
a taste of what was to come. With the use of her diary, there was
frequent communication between the unit and home.
The plan was for Marie to arrive at the bungalow where she would eventually be living, have some lunch with the other clients, and together with the nurses she would spend a couple of hours in the recreational building before coming home just in time for tea.
I felt sad because I could not sit down with Marie to explain
the coming changes in her life. Mixed emotions are common when any child grows up and leaves home but they’re more profound when the child is severely disabled. They have no voice. Marie wasn’t making these decisions about her future – I was, and I was painfully aware that her life would always be in someone else’ hands. 

Anna, Marie and Patrick 1989
I had always made it clear to the children that Marie would one
day be leaving home, letting them know it was out of the question
that they would ever be expected to take over her care in their adult life. Marie was my responsibility, not theirs. 
I'd met her when I was 16 and working as a housemother. Marie was 5 and the only handicapped child in a home run by nuns and because she couldn't walk and dragged her feet across the polished floors, the nuns locked her in a big pram store room all day or left her sitting on her cot with a rope tied around a pipe so she couldn't tip it over. She spent most of her time screaming and screeching, and had a permanent scab on her forehead from banging her head onto the floor.                                             
Frightened of everything

Us age 5 and 16

I was one of seven children and it was second nature to look out for the underdog, so I began to take an interest in Marie, I bought her shoes and tried to keep her at my side when I was on duty or took her out on my days off. She soon learnt to walk and was tottering beside me. 
Learning to walk

I brought her to live with me when she was 8 and I was 19. Although her understanding is very limited she looks upon me as her 'Mammy' and I look upon Marie as my daughter..
Now I noticed that the older my children got, the more they questioned, and they raised some logical points.
“Ah yes, but what if?” was constantly put to me.
“What if she cries for us?”
“What if nobody understands what she’s saying?”
I’d tell the children most people left home when they reached a
certain age. I explained how Marie would benefit from the social
interaction life in the new village complex would bring. It helped,
but they weren’t convinced.

Marie's early years of deprivation had left her with challenging behaviour. She couldn't bare a door being closed on her and could easily revert to the screaming and screeching if her behaviour wasn't managed in a certain way. I felt we had come a long way but had found the right place for her to have the love, respect and dignity she was entitled to.
And so Marie went to live at Aras Attracta.  
Years earlier I had attempted to write a book about our lives together and now with Marie gone to pastures greener, I took my manuscript out of the drawer and 
decided to continue with it. I worked hard for the next few months, writing, writing, writing, often during the night when the children were sleeping. The silence was perfect and allowed my mind to travel back, uninterrupted, to places and times I had desperately tried to run away from in the past.
The only sound was from Sally, a donkey I rescued from an overzealous owner. I’d seen him hit the poor thing with a stick once too often when he walked her through town. I stopped him one day and asked if he would sell her to me. He looked aghast and shook his head as if I had asked to buy one of his children. However he must have had a change of mind (like you do about your children) because when I saw him again a few days later he said I could have her for a blue. A blue? I repeated. Twenty pounds, he replied.

I was gobsmacked the day I found out my book was going to be published. When it came off the press there was a national postal strike in Ireland so the publisher Seamus Cashman, very kindly sent a dozen books down by train. I remember the day so clearly. It was a gorgeous summer’s morning and I was sitting on a bench with Patrick and Anna, in the railway station in Ballyhaunis. I smiled when I heard the Dublin train in the distance, knowing it had my freshly printed book on board. What a feeling when I opened the box on the platform to see Marie smiling on the cover! It seemed so unreal. This wasn’t supposed to happen to someone like me; someone with no education - someone who got kicked out of school when she was fifteen for being a bad influence on the class. It had been a long journey since I first spread my pages across the pasting table and tapped away on my Brother typewriter. It proved to me that anything is possible.
I couldn’t wait to take the book to Swinford to show Marie and
the nurses. The nursing staff didn’t get much feedback, and seeing the book with a special mention to Aras Attracta inside the cover, let them know how much they are appreciated. I rang on ahead so the nurses were expecting me. With Marie having no sense of time and to avoid confusing her, she was unaware of my impending visit. 
She’d been in the unit for 18 months and I still got a lump in my throat whenever I saw her. She was a people-watcher, often sitting alone watching the activity around her. As soon as she spotted me she came to life and her eyes watered, just like mine did. Some things you just never get used to and Marie leaving home was one of them.

Some days I could tell there was a staff shortage in the unit and I did feel sorry for the nurses. Routines have to be followed and staff shortages made their job twice as hard.

I kissed Marie that day, gave her a hug and then I said, “Wait until you see what I’ve got?” I reached into my bag for the book and knelt in front of her. As expected there wasn’t much of a response, so I carried on dipping into my bag and brought out her usual treats. The nurse who came over to greet me gasped when she saw Marie on the cover. Her reaction brought the other nurses over to investigate. The three nurses stood close together and flicked through the pages, pausing to admire the photos and the inscription to them in the front.

A visit to Aras Attracta
Time passed and 2000 I attended Marie's case conference at Aras Attracta and was pleased to hear she was doing well. During the meeting I cautiously looked for assurance that Marie's intimate needs, bathing, toiletting etc, were always met by female staff and was unhappy to learn from one of the male nurses present that seeing to Marie's personal care was also part of a male nurses role. To me that was unacceptable. I'm sorry but I wouldn't want a male nurse taking me to the toilet or giving me a bath and I suspect most women would feel the same. Marie has no voice and relies on us to treat her with dignity and respect. I just couldn't accept it so I contacted Deirdre Carroll from NAMHI (now known as Inclusion Ireland) who I'd been priviliged to meet a few times and asked her if there was a specific policy on this matter. Deirdre suggested I contact the Western health Board to ask ask if there was a specific policy about male staff dealing with the intimate needs of women with an intellectual disability in their care and received a wishy washy reply so I wrote again asking for an answer to my specific question and received the following response from Mr Seamus Mannion, Regional Manager of Community Services:

1st September 2000

"Dear Ms Daly,

Further to your letter of the end of July, I regret that the Board did not adequately respond to your enquiry. To answer your question directly the Board has no specific written policy. 

The dignity of people in the Western Health Board's facilities is, I believe always respected. And from discussions with the local Director of Services in Aras Attracta he confirms that intimate dealings with female patients are handled by female staff."    

I was so relieved when I read the letter and hoped the staff at Aras Attracta would understand my reasons for raising the issue. 

I was a single parent and had home-schooled my kids. When they reached 16 they returned to England to study for their GCSE. I needed to find a job. I worked in Dublin for a while during the week in the Magdeline Laundries and returned to Co Mayo at weekends. Then I began doing agency work in the Uk and literally lived in between the two countries. I often felt torn with Marie in Ireland and Patrick and Anna now living in the UK. 

I eventually settled in England but a day never went by when I didn't think about Marie. When I visited after a long absence the staff had tears in their eyes when they saw how happy she was to see me. I hugged her hard. She knew how much I loved her. Her beautiful hair looked like it had been cut around a basin and couldn't have been any shorter so I asked the nurse if they would leave it to grow. 
We went out for a few hours and had a meal in the local cafe and when I took her back to the unit, I told the nurses I would return to Ireland in a few months when the weather was warmer, to take her on a holiday. They were really pleased and I couldn’t wait.

That summer I loaded the car with Marie’s favourite things: Joey, the monkey, the baby’s buggy that she loved to push her doll in, our music videos and DVDs, her big fat catalogue, colouring books and pencils. I also took her big container of Duplo bricks, that she spent hours putting together in her own fashion—a house with no roof, a ‘twain’ with no wheels. I’d rented a holiday cottage near Westport on the west coast for two weeks. I was looking forward to some quality time, being able to relax and enjoy Marie's company. 

I sailed on the Liverpool to Dublin ferry and drove down to Swinford. I arrived at Aras Attracta and crawled along the drive to Bungalow 4. When I went inside I was pleased Marie was sitting calmly beside a volunteer having no idea of our impending adventure. I brought most of her clothes and even a pair of wellies so she could walk in the lakes at Westport. 

Marie was always pleased to see me, and no matter how far apart my visits were, she never forgot how to interact with me. We developed a language and understanding that never faded with time.

We drove out of Swinford, through Foxford and out towards the coast. When we arrived in Westport, Marie and I met the owner of the bungalow in the local superstore car park and followed him through the countryside to our destination. We must have weaved around a thousand bends and passed a million cows and sheep on the way.
Thank goodness the owner had arranged to meet us because I knew I’d never have found it on my own.

The bungalow accommodated eight people, and we were spoilt for choice; so much room and a long hallway which Marie would be thrilled to push her pram up and down. They even had a baby room with a cot.Talk about spoilt!

I unloaded the car, and put on the kettle, the CD player was plugged in and Abba rang through the bungalow. We had a cuppa, then, I put our clothes away and off we went to do some shopping. I tied a carrier bag to gate posts or trees at every bend we came to so we’d be able to find our way back. Marie laughed as I jumped in and out of the car and so did I. It was fun and we had a great week.

The next time I saw Marie, I couldn’t help noticing how thin she was. She was a slow eater and because she got up at 5 am every morning, must have also missed out on some of her meals when she was allowed to catch up on her sleep on a chair in the day-room. That morning the staff said she knew I was coming and had kicked off with her screaming, sitting on the floor crashing her head into the door.
This is where the one-to-one staff member is essential for people like Marie, with such severe challenging behaviour. Most of her frustration was due to lack of speech and inability to express herself. I felt sorry for the staff. They wanted my visit to be as pleasant as possible, and they ended up having to sedate Marie to calm her down and stop her from injuring herself. A one-to-one staff member could have distracted Marie and nipped her behaviour in the bud before she got out of control and was sedated. I took her little hand and led her to the car.

We went to Knock Shrine, which was only about eight miles away. It was a place visited by pilgrims and tourists throughout the year. People came from all over the world to see where Our Lady was supposed to have appeared in 1879.

The car park was full of coaches. Different accents drifted our way as groups of people strolled towards the churches. I lifted Marie’s wheelchair out of the back of the car, strapped her into it, and off we went. She loved being on the move, but this day she seemed quite sad and unresponsive.
Knock Shrine 2005
We went into the church and I lit some candles. I loved engaging in this ritual since I was little. I considered myself a Christian, not a Catholic. The masses were meaningless to me and I never attended them, but give me an empty Catholic church and it’s my kind of heaven. I put coins in Marie’s hand and held it over the slot in the metal box so she could drop them in. A slow smile spread across her face as the coins clanged on top of each other.
I must have lit ten candles that day. The first one was always for my older sister, Cathy, who died from cancer in 1992 two weeks after my book was published. I said a special prayer for the rest of the people in my life. I also said a prayer for Marie’s future, that I would make the right decision.

We walked around the souvenir shops. I helped Marie out of the wheelchair and encouraged her to push it with me. We did a slow walk back into the church grounds and sat on the wall to have something to eat. I was looking in the bag on my knee for the sandwiches and Marie was trying to peer in, making oo and ahh sounds, waiting expectantly to see what I have got when I noticed two cuts on her head. They were nasty gashes; although the bleeding had stopped, they were redraw. I knew it was from bashing her head into the door. Today the scars remain, leaving tiny bald patches.
I broke the crust from the sandwiches and gave Marie small pieces at a time, making them easy for her to hold. If I gave her the whole sandwich, she would have had difficulty holding the bread together and the filling would have fallen out onto the ground. I chatted away to her. It was one-side but I always talked to her as if she understood but this day she stared beyond me into the distance. I wondered what she was thinking. She looked so sad at times. I could feel my eyes welling up. I felt I’d let her down.

I knew she rarely went out because her behaviour was so disruptive and unmanageable, and yet she sat with me as good as gold. Just like always, she liked to be close by. That day, it was as if all the hope had gone from her.

So there we were, lost in our own thoughts, sitting together on the wall. Suddenly her little hand reaches out and touches mine. She took it to her lips and kissed it before resting it back on my leg. I felt overwhelmed at such a show of love. That kiss told me she knows—that she’s always known—deep down I will always be there for her. These are precious moments nobody else sees. I turned to meet her eyes, and for a fleeting moment, I felt God looking back at me.

I was weighed down with trying to make one of the biggest decisions of my life. I knew it was time; I had to seriously think about bringing Marie home.

I had been scouting around for a decent residential place in the UK where Marie could live close by and have lots of family contact but had not found anywhere suitable.

he only alternative was to look after Marie at home, but would I be able to cope? It seemed a long uncertain road, yet I had to be positive! Didn’t things always turn out OK? I took Marie’s hand and squeezed it. She looked at me, and I smiled at her. I told her that one day I was going to bring her back home. I didn’t know when, but I knew it wouldn’t be too far away, I wish she could have understood..

I returned to Ireland a few months later and collected the last of my things from storage. When I visited Marie the nurses told me her behaviour was so unmanageable when she went out, sitting on the ground in the road, screeching, etc., that they no longer took her anywhere. I suspected she sat down in the road because her left leg had gone into spasm and she could no longer walk. Some days she walked better than others, but she could never walk very far.
It was time to make that decision.
I took her to the chemist in Swinford to have her passport photo taken. After much face pulling and clowning about, I managed to get her to look at the camera.

When I left Marie back on the unit that day, I asked the nurses if I could leave her wheelchair with them for when I brought her back to England on the plane. I think they finally believed that Marie was finally leaving Aras Attracta.

I cried the night before I brought Marie home. I was 52 years-old and Marie was almost 44. This wasn't how things were supposed to turn out. My health wasn't too good. I had diabetes, and arthritis in my hands, particularly in my thumbs, which were regularly injected with cortisone. How was I going to cope? 
I would just have to put my trust in God and take one day at a time. Deep down I had an awful awful feeling that if I didn't bring Marie home soon her life would be a serious risk and she'd be coming back in a coffin.
I was also nervous. After all the trouble I’d gone through to obtain her passport, filling out the forms, presenting the correct documents at the Post Office counter, even paying the express fee, the post office clerk looked at the photo and deemed it unsuitable. Marie was only showing one ear instead of two.
My heart sunk. She lives in Ireland, I told them, but rules were rules and they didn’t make them. And now, with no passport, I wasn’t sure if Marie would be on the return flight with us.
The nurses had taken Marie back to the chemist to have her photo taken again, without success. What the image they sent over to me showed was a snarling, anti-social woman totally unaware of the effort those around her were making to enable her to return home to her family.
I racked my brains for a way around it and out of desperation, I asked the nurses to obtain a letter of identity from the Irish Police and also to get the police to sign the back of Marie’s photo. Had it been any other country, my request would have been futile, but the Irish will find a way around anything. I felt the nurses and police and anybody else involved, would do all they could to help us.
The Director of Services rang me a week later to let me know that, two nurses had obtained the signed letter and photo and these items were locked away in the safe. I was so appreciative. I asked her if they’d obtained many letters like that from the Police. “It’s never been done before” she answered. Oh my God, I’d thought, I hope it works.
My daughter Anna, travelled with me from Manchester and after hiring a car at Knock Airport we booked into a Swinford hotel.

The following day I had a planned meeting with the director of nursing to discuss Marie's notes and medication.
I was gently warned how much Marie had deteriorated and how difficult her behaviour had become. The nursing officer doubted I’d get her up the steps of the plane. It made me wonder if Marie's behaviour was that difficult why weren't they doing something about it? He suggested if Marie started her screeching at the airport to get her a cup of tea and a plain biscuit. I would never do that as I don't believe in giving in to Marie when she screeches. I thought it was best not to see Marie that day and returned to the hotel after the meeting. 

The next day when Anna and I went to collect Marie I was shocked at how much more weight she had lost. And her legs were covered in hair. The nurse gave me a month's supply of medication and a large bottle of medicine prescribed by the GP as a food supplement. I couldn't understand why she needed food supplements when she had always loved her food. I mean why wasn't she sitting at the table eating proper meals? What was the problem?

I signed the discharge papers and thanked the staff for all they had done for Marie. She slipped her hand into mine and Anna’s. We said goodbye and left.

In the Swinford hotel

We stayed another night in the hotel where Marie and I shared a double bed and Anna was in the room next door. Marie snuggled down next to me and was asleep in no time at all. I took out her care plan and began to read. 

 "Marie enjoys most foods particularly cakes, biscuits and sweets and crisp." That was so true so why oh why was she so seriously underweight.?

"If she doesn't get her own way she urinates on the floor."  I thought it was more likely she wanted to go to the toilet and staff hadn't noticed.  

"Has regular episodes of screaming, pulling her hair and bouncing on the chair throwing her head back, hitting herself. She may throw herself on the floor, spitting. She may scream and shout whilst out on trips."  Spitting - never, she isn't physically able to.


We left for the airport very early the next morning. The nurses had given me the official letter and signed photo from the Irish Police, and I just had to keep my fingers crossed they would accept it when we arrived at the airport. If they refused, we’d have a long trek on the coach up to Dublin to travel as foot passengers on the overnight ferry. I shivered at the thought.
The ground was still covered in snow. We left the hired car in front of the airport entrance as arranged and hurried in through the doors.
Standing in the airport with my two daughters was surreal.
I hovered around the check-in desk waiting to get this final ordeal over with. As soon as it opened, I put the luggage on the conveyor belt. Anna and I handed over our passports. The operator checked them over and handed them back. Then I took Marie’s letter out of the envelope and acted as though it was the most natural thing in the world when I handed it over for her to read. I bit the inside of my cheek as I stood watching the operator scan the letter, searching her face for a sign of disapproval. She looked up at me.
“Oh, that’s fine!” she smiled and handed it back. “Have a good
I turned to Anna and sighed with relief. At last I could relax.
We were starving, so we went to the cafe for some breakfast, the
three of us sitting together. It felt good.

We went on ahead of the other passengers and wheeled Marie out to the plane. She was a little angel and took everything in her stride. I must have been beaming like a Cheshire cat when we reached the aircraft and the steward took her wheelchair to put in the hold. Marie was definitely coming home. I watched her hold onto Anna’s hand and climb one slow step at a time…up…up…up…to the aircraft and through the narrow doorway for our journey home.
The propeller swished and we held hands as the stewards went around slamming the overhead lockers closed. I looked out across the snowy fields with very mixed emotions. We flew into the clouds leaving the bogs of Mayo behind—so much sadness, but there was also plenty to look forward to.

"2nd day at home Dec. 2007
1 month at home
 I always blamed myself for what happened to Marie. For years I've carried around the heavy burden that Marie's physical deterioration at Aras Attracta was because she was fretting for me and I wasn't there. I was off trying to get on with my sometimes difficult life with the knowledge that she was happily getting on with hers. As the nurse said, they were her family now. 
6 months at home 2008
But I took her on when she was five; she was a gift from God then as she still is today.

I watch the video clip of those poor women being abused and wonder if Marie has been too. I remember in 1998 receiving a letter that Marie had had an accident at Aras Attracta almost a week after it happened. I immediately rang a senior member of staff and was informed Marie had been having a temper tantrum at 7.30 the previous Saturday night and thrown herself back off the chair hitting the corner of the wall and cutting her head. A GP was called and when Marie (whom I imagine by this time was in a very distressed state, bearing in mind her mental age is below that of a 2 year-old) wouldn't co-operate with him stitching the wound she was then taken to Castlebar Hospital and had 4 sutchers. I wrote to the Director at Aras Attracta and complained about the time it took to inform me and I also asked for a copy of the accident report.
I brought Marie home for a week and gave her plenty of TLC. She was none the worse. Accidents happen and if Marie was that easy to look after she would have been living at home. However, I did feel it could have been avoided had Marie been moved to a 'safer' area and I put it down to busy staff and not enough of them.
Today I look at the accident report filled out by a male staff nurse; 'Temper tantrum, headbanging and kicking. Sat on floor and hit her head backwards on corner of the wall.'  but now I find myself scrutinising two conflicting accounts of how Marie was injured and I wonder if she was shoved or pushed by a member of staff. I wonder if the staff nurse on duty the night of her accident is one of those suspended. My mother used to say evil thinkers are evil doers, and I hate to think the worst of them, it's just not in my nature. Then I remind myself of all the lovely nurses I met at Aras Attracta and the vision they had when it first opened. I think of how good they were taking Marie to the chemist time and again to have her passport photo taken. The trouble they went to obtaining a letter from the Gardi enabling Marie to travel to England. I have a photo somewhere of myself with the then Minister for Health Brendan Howlin, at the late official opening of Aras Attracta and I have to keep reminding myself there's a lot of good in the world.  

The fact that it was a whistle blower nurse who first raised concerns about the standard of care long before the TV team did their filming shows the integrity and dedication most of them have. Thank God RTE followed it through and did their own investigating for all the world to see.

I would like to know which other bungalows the abusive staff worked on at Aras Attracta and if any of them were on bungalow 4 before December 2007.
I would also like to know how many patients in bungalow 4 had meals replaced with food supplement medication. 

For all this to happen in a rural area means there is no cloak of anonymity. Everybody knows everybody and there'll be no escaping the public wrath. I don't really feel any sympathy for the staff who abused those poor vulnerable women. However, I do hope the public will remember that the abusers families are innocent victims in all of this. Their lives will never be the same any more than the lives of the families of those poor women will.

Marie in 2014

I have always had a great interest in social care and having been on both sides of the fence has given me much perspective. Being a full time carer to Marie makes me almost housebound but I do what I can to help others. I also write family life stories about people with special needs and am founder of Warrior Mums blog for parents of children/adults with special needs.

Since Marie came home I updated our story and published under the original title of With a Little Help From My Friends. It's a very appropriate title dedicated to all the people who have helped us over the years. I was honoured to have Dr Sheila Kidd, retired Consultant Psychiatrist, Cambridge, who has been interwoven into our lives since I first brought Marie home, write the foreword.

And again I paid tribute to -  

"The nursing staff at Aras Attracta, Swinford, Co Mayo, Ireland for the love and care they gave to Marie." 
I mean that from the bottom of my heart. There was a time she did have lots of love and care. I just wish it could have continued...

Contact details



Michelle Daly's Warrior Mums

With a Little Help From My Friends - in paperback

With a Little Help From My Friends - Kindle