|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.
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.
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!
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.
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.
Learning disability is where the new money is!
|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 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 updateI 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?
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.