|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.'
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 speechless. 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!
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.
(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..
When you are down to nothing, God is up to something...
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.
And now here I was 43 years later trying to secure her future because of my ailing health.
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 glycerol spray for under my tongue. Yet another string to add to my bow.
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. Then I had to complete 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 unnecessary paperwork they regularly bombard us with.
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.
Learning disability is where the new money is!
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 learnt 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?
|My battle scars..|
UPDATE 1st December
This post only went up yesterday, 30th November, and late this afternoon I had a phone call from the social worker to tell me Marie's assessment was completed. For a moment I thought he was about to tell me the placement of our choice could go ahead. Silly me! I listened as he went on to tell me that Marie was uploaded onto the internet portal on Tuesday - two days before I wrote this post. I was stunned. This vulnerable woman that I have loved and protected for most of our lives had been put up for auction.
He told me 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?
He told me they will bring the best 3 offers for us to decide which one we wanted.
Well I am afraid they are wasting their time because Marie won't be going to any of them..
Unfortunately Liverpool City Council excluded the Care Home of our choice from the tendering process so I think that just about sums them up.
I feel so broken, beyond shocked and devastated - just broken.
What kind of world are we living in to treat vulnerable people and their families in such a way?
2nd update - 4th DecemberI 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 slowly getting 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 I asked the social worker how he could have done that to Marie and he told me I already knew what was going to happen and that 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'm not their puppet and 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?
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 so shocked at our experience?
This afternoon a 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 28 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 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.
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.
Below is the follow up post with Freedom of Information results..
Blackpool, Birmingham, Bradford, Bristol, Buckinghamshire, Cambridgeshire,
When it came to LA decision making, the home of our choice and where we were led to believe Marie had been assessed for, was excluded from the selection by the local authority. I was informed daughter could not have the home of preference because other clients would see it as favouritism and then they'd have to give everybody what they wanted.
The social worker told me over the phone that Marie had been uploaded onto the care portal for 7 days and that if nobody bid for her she would be uploaded for another 7, and I nearly collapsed.
No bids for your daughter is bittersweet and shows how heartless and cruel the tendering process is. However, I must add that from the beginning I refused to recognise, support or take any part in the tendering process and also relieved to add that Marie eventually went to the Home of her choice.
1. Since April 2014 how many adults with a learning disability applying for residential care has xxxx County Council submitted for tender on the internet care portal for care providers to bid for their care packages?
2. How many of these people lacked capacity?
3. How many adults with a learning disability has xxxx County Council successfully placed through the tendering process since April 2014?
4. How many of those successfully placed lacked capacity?
As the FOI results trickled in my heart began to lift; all was not lost. Despite their poor funding and whilst there may be many Councils around the country that still use care portals most of the authorities I contacted did not.
Tendering on care portals is clearly controversial. To submit the details of those who lack the capacity to give their permission is despicable. I am told that no personal details are submitted but that's a contradiction in terms because every word written about my daughter pertains to who she is.
If Marie applied for residential care and had no preference, since April 2016 under the Care Act she should be offered several choices of accommodation.
If Marie had a preference, under the Care Act SW could present her with more options in order to ensure Marie has a fair choice. It’s face to face personalised planning that takes Marie’s needs and preferences into account though we would still have opted for her preferred home that had been keeping her bed for months.
(Instead they rejected Marie's preferred choice and offered her to three strangers.)
So the Care Act promotes a selection of choices to ensure a person's needs will be met. What the Care Act does not do is promote mandatory use of care portals as the SW tried to make us believe.
To ignore the family's wishes and replace the Home of Marie's choice with a one shoe fits all high-handed approach was obviously designed to bully us into doing something I found totally abhorrent. Putting adults with a learning disability out for tender did make SW job easier and I do accept how heavy their work-load can be but by doing so they turned my daughter into a commodity and devastated all the family. Just throw all the vulnerable adults into the drum, give it a spin and see which unknown care providers scroll through their details to see if it’s worth bidding for the care package - or not. Thankfully most local authorities I approached did not resort to using portals and preferred to meet individual needs in a more dignified way.
Click blue links below to individual What Do They Know Freedom of Information requests.
Blackpool Borough Council
is not something Blackpool Council would impose.”
Blackpool Borough Council - Freedom of Information
Buckinghamshire County Council - Freedom of Information
care during the period of 2016. Due to changes in the Council’s computer
systems data prior to 2016, and any further information or more accurate
assessment of how this care was tendered, is not held.”
Cheshire West and Chester Council - Freedom of Information
family identifying a residential home and then the social worker would present this to panel
Essex County Council - Freedom of Information
Gloucestershire County Council
I am pleased to provide a response to your request for information, received on 29 December 2016: Since April 2014 how many adults with a learning disability applying for residential care has Gloucestershire County Council submitted for tender on the internet care portal for care providers to bid for their care packages? Answer = 91
care for adults who have a learning disability.”
Hampshire County Council - freedom of information
"None as all residential care in our borough is in-house and all out of borough placements are spot purchases." Obtained directly through email so no link.
submitted for bids on the care portal. For Learning Disability, Mental
Health and Physical Disability, residential contracts are awarded to new
services/providers following the completion of the Residential Cost Model
process and fees being deemed as value for money, taking into account the
need for the specific service. Once the cost model process has been
completed individual placements are made to a service through the KCC
Adult Purchasing team, taking into consideration the needs of the
Lancashire County Council - Freedom of Information
Leicestershire County Council - Freedom of Information
relates, however in general the Council does not use such a portal for
LD care tendering purposes. Ordinarily, up to three Providers are
short-listed and invited to Tender on the basis of the following
criteria; Ability to meet care/support needs; Service User / Family
preference; Cost; Geography; track record and experience; CQC/ LCC
Liverpool City Council
process. Eighty five have been placed in a residential setting included supported living, residential and nursing care.”
Liverpool City Council - Freedom of Information
disability applying for residential care have been 'offered for tender on
the internet to care providers'”
Nottingham County Council - Freedom of Information
purchase supported living and community support services in this way.”
Oxfordshire County Council - Freedom of Information
in accordance with the Care Act and ratified at a Quality and
Peterborough City Council - Freedom of Information
Plymouth City Council - Freedom of Information
“Rochdale Council operates a preferred provider list for learning disability. All packages are commissioned against this list via what is known as an “expression of interest”. Packages are subsequently reviewed against individual need prior to an award being made.
We do not advertise these on the internet.”
internet to care providers for people with learning disabilities applying
for residential care.”
Warrington Borough Council
Warrington Borough Council - Freedom of Information
Wirral Metropolitan Borough Council - Freedom of Information
Wolverhampton City Council - Freedom of Information