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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. 
 
 Reflections

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.



20 comments:

  1. Michelle, this has made me cry - both for you and for Marie. I know you have devoted your life to Marie, and it is appalling that you are both being treated like this. I'm so sorry that you are having such a lot of medical problems, while at the same time having to deal with such appalling bureaucracy. I wish there was some way of getting this heart-breaking story into the national media, and forcing Liverpool CC to change its inhumane policies. My heart goes out to you.
    Much love
    Paula xx

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    1. Hello Paula,
      So lovely to hear from you. I know you have followed Marie's story through the years which must make it particularly sad that she ended up in this situation.

      It's heart-wrenching to have looked after someone so vulnerable (and adorable!!) for most of mine and her lives and to see this happen, especially in a city I was born and bred in and so very proud of, up until now.

      Nobody will hurt Marie because I won't let them but shame on them all for treating her with such disregard and uploading her details onto a care portal like some kind of Ebay item.

      Thanks for stopping by Paula, I really do appreciate you taking the time to comment. xx

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  2. I am a social worker and I'm so sorry to hear this. Social workers should be advocating for you taking the lead in this. It is sometimes necessary to show that other options have been considered, even if just to discount them and prove that your first preference is the right one. However, you should be fully involved, making sure you check any info to be sent out to providers (which should not be identifiable) and letting commissioners know what questions they should be asking to see if other providers can meet needs. Then there should be an opportunity for you to meet with and ask questions directly of the shortlisted providers. Done well this should feel supportive, most likely proving that what you're suggesting is the right option and therefore also the most cost effective (yes, we also have to make sure we're getting value for money). Social workers should be supporting you to feel that this is a process, albeit a tiresome one, to help you get to where you want to be, not that a person is being put up for sale. Very badly done.

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    Replies
    1. Hi Donna,

      Many thanks for your comment.

      I think you posted this before I was informed Marie had been uploaded onto the care portal. I was shocked because the social worker excluded me from the final process so I was totally off guard when he phoned to tell me the day after I posted our story that he had gone ahead and advertised Marie and against my wishes. I asked him what words he used to advertise her and he said he'd bring me a copy but I was so distraught I told him not to come near my house. We have now been allocated a new social worker!

      I have always got on great with our previous social workers and mutual respect meant we kept each other in the loop. There's always been an affection for Marie too that I have found lacking in recent times. I don't mean that I am this wonderful person that everybody gets on with because I am quite a direct by nature, if problems arise I like them dealt with and that's worked well for all of us in the past. It's healthy and above board.

      I like to think I have just been unfortunate but everything happens for a reason, if only to highlight the tendering process and the depersonalisation of social care today.

      Thank you for your input and please pop back now and again as your advice is very welcome.


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  3. Hi

    Have you checked with the home you and Marie want to provide the care is on the portal and is aware they need to go through that route to let the LA know they can meet her needs and at what cost.

    Hopefully if they do that Marie will still be able to go there.

    I would also email the LA to find out what the deadline is for providers to contact them and when they have the options say that you want to be fully involved in the best interests decision that decides.

    It is true that the LA can take cost into account however if they agree your choice is the best option for Marie but cost is pushing them towards another make them say that explicitly rather than hide behind jargon.

    I hope the manager of the social worker who ypou refer to has been made aware of there comments and takes the appropriate action!

    Good luck.

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    1. Hi Unknown!
      Thank you for your comment.
      I told the Manager at Marie's preferred home that she had been put on care portal but they (the home)had been excluded from the process which makes a mockery of poor Marie and her rights - 'Best interest' etc.

      The social worker said Marie goes up for seven days and if nobody bids for her then she goes up for a further seven. (It still brings tears to my eyes talking like this, it's just so unbelievable and I will never get used to it.) If there are any bids he will bring me the most suitable three to look at. (Well he won't now because he's gone!)Hopefully we will be back on track with the new social worker and she really will have Marie's interest at heart.

      I am going to ask the wonderful staff at the home where they have kept Marie's place since July to put a hot water bottle in her bed so it will be nice and cosy when she gets there. What a fab Christmas present that would be!

      Thanks again for stopping by.

      Best wishes,

      Michelle

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  4. I'm so upset for you and Marie, how utterly shameful and disgusting the way you have been treated as a mum who has loved and cared for Marie, who knows her better than anyone. You have found a place where you know Marie would be well cared for and happy, if like they always say they do the best, why in the hell aren't they, shouldn't be about cost, should be about caring as if Marie were one of their own. The system is a complete joke. Love and hugs Michelle and to Flossy xxx

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    1. Hi Sophie,

      Here we are again over yet another serious issue.

      Once upon a time parents of adults with special needs were valued for the contribution they made; the knowledge and insight they shared with professionals, you know, the more informed everybody is, the better. Since the Mental Capacity Act was brought in parents of adults with special needs have been shut out and are mainly looked upon as a nuisance, and are quite often ignored and interest in our adult child's welfare is looked upon as interference.
      We are their voices but as you can see in Marie's case, this government wants their voices silenced and what better way to do it than not to acknowledge the parents.

      I hope one day we'll all have some peace in our lives. All we want is the best care and support for vulnerable members of our family but it seems we're asking for too much.

      Fingers crossed Marie's issue will be resolved by the New year and she can go to the place she has indicated she loves. One thing is for sure, she cannot go and live with strangers, it would be just too cruel..

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  5. What an awful way to treat you and Michelle..as a poster above said, can the home you have chosen apply in this tendering process? And could the social worker or any other advocate support you in measuring Michelle's happiness and the understanding of her needs there as part of the process? I so hope this gets resolved soon in a way that supports you and Michelle.

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    1. Hello Joan,

      As I have already stated above the home was excluded from the tendering process. The system is supposed to revolve around Marie's needs but this experience has proved they couldn't care less about Marie or her individuality. They don't care about parents either.

      The Carers Act is a joke! I have filled out two carers assessments in just over a year and they haven't even been acknowledged. I wasn't asking for anything for myself anyway, just demonstrating how the deterioration in my health affects my ability to care for Marie 24/7. It's sad to think there are thousands of people around the country in the same situation as me and their cries for more support fall on deaf ears. They sit alone late at night wondering how they are going to cope the next day and the one after and the one after that, with no end or solution in site. They die from poor health but what they really die from is neglect and that's a tragedy after providing a lifetime of love and care until they could provide it no more...

      Thank you for taking the time to leave a comment.

      Michelle

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  6. I am my Beautiful 40 year old Daughter's Everything/...Mother/ Public Guardian. Your story is so very, very similar to our own. I am just so frightened.

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    1. Linda, you are speaking for many parents! It's concerning and so very sad that we are living in fear for our adult child's future. Nothing is written in stone and we families have to push for change. The tendering process is immoral and needs to be abolished so that parents can go into the future with the assurance their child's individuality and right to a fair choice is exercised.

      Your daughter sounds like she brings as much joy to you as mine does to me. xx

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  7. Anonymous22:02

    It is a cost cutting exercise as each provider has to attempt to undercut the other bidders. Sadly, providers often claim that they can meet someone's needs even when they can't especially if they've got a few vacancies.

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    1. The whole process of putting someone with no voice and who is unable to make any choices for sale on the internet is disgusting. How dreadful that care providers are encouraged to compete over a human being, and bargain for their care.
      What are we looking at here that makes the care provider enticing?

      'A cooked breakfast on Christmas Day'

      'A day out to the beach in the summer'

      'Choice of bath or shower twice a week'

      'Only charging half price for fresh air through vent in bedroom window'

      It is doubly cruel for a care provider to claim they can meet someone's needs just to fill a bed because then that placement is likely to break down. This is where families come in because they could tell at a glance whether or not a care provider can meet their child's needs.

      Thanks for your comments.

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  8. I have read your post a couple of times and each time with a heavy heart. I was (and still am) part of the inclusion movement. I am a glass half full person. I brought my daughter up to be positive about her place in society, to feel proud of who she is, to know about and understand the social model, and to facilitate her to have a voice. Those were the days of hope, of dreams and aspirations. Those words are hardly used and now we are all walking on egg shells, with her heads down, dreading the day a social worker is going to walk down our garden path unexpected with a large pair of scissors to make that last deep cut and take away any glimmer of light we have. We have little choice and the control is not with families but with the Local Authority who see our children and loved ones as a burden on society. We need to come together in unity and solidarity and support one another in these very bleak and hard times that lie ahead for each and everyone of us. Thinking of you Michelle and Marie xx

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    1. I too am an optimist and a dangerous one at that. No matter what comes along and knocks me off my feet it isn't long before I am up again and dusting myself down. I have to admit though, these days it's taking me longer to bounce back as more and more shocks present themselves with regularity.

      I think a lot of families feel abandoned as they witness the main charities sit on the fence over a lot of serious issues. Charities that don't like to involve themselves in controversy. I mean, why weren't the main charities marching through the streets when tendering people with a learning disability was introduced? Why have none of them commented on Marie's appalling treatment? Their silence is deafening and their indifference alarming.

      You are so right about parents coming together in unity and solidarity. We only have each other but together we can be a strong force and we mustn't give up. We have to forge on and try to make the world a better place for our sons and daughters to live in. And we can do it.

      Thanks so much for stopping by and leaving a comment.

      Much love to you and your daughter.


      Michelle xx

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  9. Anonymous20:53

    Thank you for sharing your story Michelle. It is disheartening and frankly quite frightening to hear about. My thoughts are with you and Marie.

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    1. And thank you too for taking the time to read it!
      Everything happens for a reason and I hope this experience has helped to expose the appalling way people with a learning disability are treated and to try to put an end to the inhumane tendering of real people As if they are objects for sale.
      Best wishes,
      Michelle

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  10. Oh Michelle... I'm (through-the-tears) grinning from ear to ear too! Fabulous news. I'm so relieved for you, and for Marie. Happy Christmas, Dear friend. Much love. Kimmie x

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  11. Thanks Kimmie! The good news has given so many people a lift.

    Happy Christmas to you, too and all the best for 2017! (Things can only get better - for all of us.)

    Love and hugs,

    Michelle xxx

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