Thursday, 22 December 2016

Sunday, 20 November 2016

Post truth, truth







We are reliably informed, by those upon whom we reliably rely for our information, that we live in a “post-truth” age.

At a time when assertions of “facts” are destabilising at best and terrifying at worst, it’s a phrase, which, like the foreign sounding “Iced Caramel Macchiato” have become part of our linguistic currency. But what is the current value of the truth pound, dollar, euro or yen?

Donald Trump who is soon to prise the reigns of power from the stunned and resentful staff of the stunned and resentful White House, knows what truth is.

It’s the words he’s used to galvanise the Electoral College who chose to put him in the top job. Irrespective of the fact that Hilary Clinton managed to gain the majority of the popular vote, Donald Trump is going to march purposefully up to the microphone, place his hand on the bible and stick it to the liberal elite; before building his wall.

Nothing, to my mind, says “anti-elitist,  pro-inclusivity” than a great, big, physical barrier, at the border between countries.

But I was talking about truth.



Katie Hopkins tells the truth. She has experienced a stratospheric career trajectory out of doing just that. She tells us all the time that she “tells it like it is”. She tells us this with more of that fabrication destroying currency, called words. Words that triumphantly, bring to our consciousness, real and present societal dangers like “being overweight”, “children’s names”, “compassion”, and “refugees who drown whilst pursuing sanctuary”.

Nigel Farage is another truth teller. He nobly led his supporters and those who aren’t his supporters but who were afraid for the NHS, to the truth laden Brexit which we’re all so looking forward to and which our government are handling so well.



Nothing says democracy more than the UK Government, challenging the decision of high court judges who have spent their lives upholding truth and justice. No one could argue either, with the truth inherent in detailing the sexuality of one of those judges on the front page of a national newspaper, the day after the ruling. Because apparently that matters.

Both Farage and Hopkins champions of the average Jo and Josephine, are close friends of the Donald. They wafted away the pungent aroma of challenges to their truth, which filled our lungs, concerning their friend as the presidential race began in earnest.

As that aroma hardened into a stench, they joined the chorus of loyal Trump supporters in reassuring us that Tax issues, sexual assault, racism, islamophobia, misogyny and punishment for women exercising control over their own uterus, were simply the ranting of a country and indeed a world who had been lied to by the establishment.

Nothing to my mind says anti-establishment more than a rich, white, Christian, heterosexual, businessman, TV star, bragging about how he can do as he wishes with a woman’s genitalia, because he’s famous.  When it comes to locker room banter, Donald is a perfect 10.

So where do all of us feature in the unstoppable rise of post truth. Do we even care as we settle down for a bit more of the panacea of reality TV shows, punctuated briefly by our time on social media nobly haranguing those who dare not to wear a poppy.



As the hate crimes soar and the written rape threats to women MP’s multiply we all need to smile. Disabled people have long been the scapegoat de jour but you won’t find any truth there either.

Fortunately we have had our eyes opened to the truth in respect of disabled people, who irritatingly express a wish to exist, eat and have a roof over their heads. Fortunately truth tellers who lead the DWP had a plan of honesty which pre dates the post truth Johnny and Jenny come lately’s.

Any sickness benefit claimants were politely instructed to attend interviews, where they were expected to answer truthfully, honest questions about their health by highly qualified assessors. The myriad and complex nature of medical training that requires years of study in both mental and physical health, can in the post truth era, be desiccated into inquiring of the claimant whether they can, in fact, lift a cardboard box or place a pen into their top pocket.

Nothing to me says, “Fit for Work” more than the man who died from a heart attack after collapsing in one of these assessment centres. The letter his family received from the DWP stating those words after his funeral, bears out my point too.

The Work and Pensions Secretary Damian Green MP was also truthful in his critique of “I Daniel Blake”. The film by Ken Loach detailed many accounts of those who queue at the food banks, which feed hundreds of thousands of people who have been, in truth, sanctioned into starvation.



Damian Green hadn’t seen it, when he criticised it, but that doesn’t mean he wasn’t an expert in being able to truthfully challenge the fictitious nature of the annoyingly well-researched film. Damian Green had no reason not to champion his DWP employees. He just forgot to champion the employees who had told the truth to Ken Loach, as Green, with absolutely no agenda whatsoever, branded the film “a fiction”.  Columnist Camilla Long also added her doubtful view as to the truth inherent in the film including the fact that her partner is from Newcastle and he doesn’t know any carpenters called Daniel.

Facts like these need to be heard. Never mind Peter Bradshaw and Mark Kermode with their complimentary critiques based on their expert experience of reviewing films. We know that the post truth era has no time for experts.A quick look at their timeline will show the discerning reader that they never stop promoting a litany of liberal and elitist lies. They may be well concealed as film reviews or tweets about other things but look closely, look through the lens of post truth and you will see the veracity of my statement.

If they like films so much, perhaps they should go and live in North Korea.

Nothing to me says “Palme D’Or winning film” more than the suggestion of an entire fabrication, which can easily be discounted and disavowed by the government responsible for it’s creation and which tens of thousands of benefit claimants have embraced, as an accurate representation of their lives.  The conspiracy theory inherent in that collusion knocks Area 51 into a cocked hat, because no one likes a liar Ken.

But I have drifted away from my main point, which was about the inconvenient post truth, truth, that Donald Trump is going to be the new President. He is trusted by many millions of Americans and much more importantly, he is trusted by Katie Hopkins, Nigel Farage, Kanye West, and Milo Yiannopoulos. I’m sure like me, these people are definitely the ones to whom you listen when making important decisions like choosing the person to carry the responsibility of punching in the nuclear codes.

He may be feared, by some, but those who fear him just don’t understand him, or indeed the new Vice President Elect and supporter of musical theatre, Mike Pence. A fan of the, in no way unethical, gay conversion therapy.  What kind of world are we inhabiting where a Vice President elect can’t attend the theatre anymore, without being politely reminded by an actor not to forget those who need the administration to support them?

I was incandescently offended, as only a Brietbart employee instructs us definitely, not to be.

This dynamic duo have a mission, they are honest, they are a break from the dull boring ideals of Presidents of the past like Barack Obama who wanted to do reprehensible things, like bring health care to millions of disenfranchised Americans.

Thankfully politicians like Hilary Clinton, who used email and gave speeches with styled hair and whilst wearing make-up, are going to be a thing of the past. As an experienced Senator (2001-2009), Secretary of State (2009-2013) and First Lady (1993-2001) what does she know about running a country?

Donald knows how to run a golf club and a hotel chain which is better than a country, because those sand traps don’t rake themselves, nor does the toilet paper form itself into a pointed edge and that’s what really matters. 

Details like that along with racist walls, racist registers, misogynistic loss of reproductive rights and staying up to date with your "in no way embarrassing" Twitter feed, will make America and by extension, the world great again.

I say we give them a chance. Post truth is the new truth, so stop whining about rights and grab yourself some pussy.

Tuesday, 20 September 2016

No one left behind

Like many Jeremy Corbyn supporters I watched Dispatches last night totally convinced when I began that there was nothing that would change my view of the man who I felt huge gratitude to in raising the issues faced by millions of disabled people in Britain today.

I heard the allegations of Trotsky infiltrations with amusement rather than concern, heard the mantra that Corbyn provided no credible leadership, with cynicism and assumed that the notion of de-selection was a vicious lie prompted by the threat many Blairites felt at the tidal wave of support Corbyn is receiving.

From the beginning the glib Lobotomy joke from a worker at Momentum gave me a worrying shock. There is a mantra of a kinder politics, of equality, of a place for everyone and the assurance that no one is left behind. Yet a glib throwaway joke no doubt delivered to show some kind of machismo, felt like a jarring insult to those of us who believed all of that stuff from the beginning.

As the programme unravelled so did my confidence in my preferred candidate who I’d voted for an hour beforehand. Issues like a potentially breached legality around payment of employees, were worrying. But the two facts were irrefutably established, self-avowed Trots are highly visible within Momentum and de-selection of sitting MP’s with whom they take issue, as an intention is very real.

Immediately Twitter exploded with Corbyn faithful tweets of “Hatchet job” “Stitch up” and suggestions that this was a private production company with an agenda to destroy Corbyn.  I wearily pointed out that all production companies are private companies. They are used by all broadcasters and that despite any efforts in the editing suite, Momentum workers weren’t being forced to say and do these things.

After the programme finished we felt letdown and thoroughly depressed. I’ve been a vocal supporter of Corbyn from the beginning and as the leadership contest has rolled I’ve refused to argue with people I’m very fond of on Twitter who felt differently about the leader of the Labour Party.

I’ve been a party member for 6 years. It’s not been a passive membership for me. I campaigned locally in the 2010 election because I knew the issues that I campaign on outside of politics were going to become inextricably enmeshed with Cameron in charge. I joined to fight for Labour and to fight for my children.




With the coalition came the deconstruction of the welfare on which working and non-working disabled people and carers rely. After the election I was asked to become my CLP secretary. I gave up the little free time I had as a fulltime carer because of my responsibilities. I was glad to do it. I attended conference and spent a lot of time with Johanna Baxter, a devoted advocate for member’s rights and I saw her elected to the NEC. There was no better woman for the job.

My admiration for the leadership waned after there seemed to be no firm intention to fight welfare reform. For me it was a direct denial of the basic principle of the party I loved. So I left the party. After a few months Ed Milliband seemed to recognise the issue needed closer attention and this gave me confidence in my party again, so I rejoined.

When Jeremy Corbyn joined the race for the leadership his direct commentary on the shameful assault on disability benefits had a profound effect on me. He seemed a man of decency and character and had been one of only 22 mp’s to vote against welfare reform from the beginning. I felt huge gratitude and hope and felt sure that in comparison to the old management speak approaches as vocalised by candidates like Liz Kendall, his integrity was, to me, genuine and unvarnished.

When Corbyn was elected leader I felt genuine hope for the first time in a long time.  My battles for my 19 year old learning disabled daughter have given me a deep understanding of the need for equality and fairness in Tory Britain. 

Diane Abbot herself a target for racist abuse online, has always been a supporter of my fight for my daughter and for the issues of disability rights more widely.


My daughter Emily
My work for the Labour party as CLP secretary has given me a greater understanding of the values of members and the hopes the leadership carries in representing them.  My time on social media has shown me the bias of certain aspects of the media and the real nature of Trolls and cyber bullying.

For 8 years on social media I’ve campaigned on the unpopular issue of disability rights and hate crime. Unpopular, because people don’t really want to change.  If they want to use pejorative words referencing learning disability as a joke or a silencing insult, they tend not to be too keen on my asking them not to.  Unless they’re decent and kind and then they apologise and stop doing it.

Reading articles on the issue of disability hate crime makes some feel uncomfortable. The knowledge that millions remain disenfranchised actually and politically, whilst a centrist Labour party viewed defence of disability benefits, only through the paradigm of political kryptonite, was infuriating.  It was only after Corbyn that this issue was properly addressed. He gave voice to the silenced and it must be said to many Labour Mp’s who were whipped to abstain or voting their conscience and risking career suicide.

The two documentaries last night, didn’t highlight, even with covert cameras that Corbyn is anything other than he seems. No discriminatory unguarded comment, no inappropriate behaviour. However, a man is also judged by the company he keeps and the reputational damage must be addressed by affiliations of extended groups and supporters. If Momentum allow self identifying Trots to speak at events, then the criticism that this is happening is valid. Tom Watson isn’t a liar or a plotter by saying what is true. I feel deceived into believing that this was never true.

Another assurance of a myth that was demonstrably true in both documentaries last night, is the issue of de-selection. This is undemocratic. You can’t claim a broad church and start closing the doors on parishioners who don’t agree with you. Irrespective of what others have done to the hard left within the party, Corbyn’s ticket promises change, difference, equality and fairness. Most of all it promises kindness.

If you’ve been online in recent years, you’ll understand what it is to be a woman on social media with any kind of platform. You’ll know that death and rape threats are common and can be delivered by anyone with a keyboard to any woman with a profile.  Irrespective of how often this issue is highlighted men will still claim that Jeremy Corbyn has received his fair share of abuse. He has many men do. Bullies will target any kind of difference and perceived “weakness” However until all men in positions of power understand the fundamental difference of being a woman online they will never truly be part of the solution.

General remonstrations are not enough. General calls for greater tolerance and calm are not enough. This targeted abuse is highly specific and whether the tinfoil hat of conspiracy theories is obscuring the view, the fact is Jess Phillip and JK Rowling deserve to be able to voice an opinion free from threats of violence. 






Last night when I commented that I liked Peter Kyle, an MP I was unfamiliar with, a Corbyn supporter sent me photographs of dead Syrian Children.

He didn’t know that I was a Corbyn supporter. He’d clearly decided as a Corbyn supporter himself, that I deserved a lesson. He used dead children as propaganda to school me that my opinion needed attention.

Irrespective whether Corbyn is aware of these people personally is not the issue. They are acting in his name. He has to address the fact that the tidal wave he’s riding on is made up not of a minority of abusive tweeters but a significant number who believe they have the right to attack anyone they choose in defence of Corbyn. In that respect they remind me of my experiences with Trump supporters online, who deem all criticism of their candidate invalid and any methods they deploy as proportionate.




This is where we are now. The mob rule of law, the decision that unless every syllable written is in slavering support of Corbyn and frothing assault on his critics then retribution will be fast and furious.

John Mcdonnell is quoted as saying “We don’t do leaders” that may or may not be true but now they have attained leadership, that is the job at hand. With rights come responsibilities. Corbyn has the right to assemble an army of supporters, he has a right to speak and to be silent but he has the responsibility of those values he voiced which gained him huge support, to support those now being attacked.

Corbyn needs to stand up to the bullying Tories and the bullies within his own ranks. Cyber bullying is a real issue. Verbal abuse and threats and harassment of women and men online and in life is being enabled by his silence.

People reading my tweets last night predictably decided I was now anti-Corbyn. I’m not,  I’m anti bullying.  This binary notion that “If you don’t love him, you hate him” is best left out of the equation. Sometimes supporters need to voice concern, it’s an act of friendship not an assault.

In response to C4’s Dispatches last night the Momentum twitter feed was cracking jokes and boasting about people joining. Bravado is one thing but it underlined to me that there is a lack of understanding about the seriousness of the damage that the programme did. Not to those so entrenched in fanaticism that they say all is well but to members like me who last night saw the Emporer’s nakedness not Momentum’s invisible clothes.

Corbyn’s strength lies in his own attributes, in his values and in his integrity, he must be careful that the group who support him must not be allowed to consume him.

Many people are relying on him not to leave them behind.
  

Tuesday, 2 August 2016

Petition 2

So HM government rejected my first petition because they said I didn't make clear what I was asking them to do. I thought I had and couldn't have been clearer.
I was a bit gloomy about it then I stopped doing that because that's stupid. So I made a new petition and sent it out to 5 people asking for support because that's what the government tell you to do.
Amend existing Hate Crime legislation to specifically include disabled people.
Hate crimes are recorded for disabled people, however the criminal offences detailing hate crime, do not cover disabled people. Crime & Disorder Act 1998 "Hostility on the grounds of race & religion" Public Order Act 1986 "Stirring up hatred on the grounds of race, religion & sexual orientation"
Legislation needs to be clear and precise in its definition of the people targeted by hate crime and in the sentencing of those who commit hate crimes. It is a unique offence and needs to protect all those whose lives are devastated or ended through hatred. Disabled people cannot choose not to be disabled. Disabled people need the law to be amended to offer them full protection and to serve as a deterrent in sentencing those, motivated by hatred & hostility, who commit targeted offences.

Friday, 8 July 2016

A little bit of hope






Last night at 10.30pm after another day of no news from the Council or the CCG but with lots of help and support from everyone online, I got the following email from the CCG. The tone reflects what I perceive to be the joint authorities irritation with our persistence. I reproduce it here in it's entirety having removed the address. 


Nicky

An update on XXXX XXXX.

Shropshire Council and the Clinical Commissioning Group have reached an agreement in principle regarding XXXX XXXX.  In order for this to be implemented, legalities need to be confirmed by both parties, along with the landlord, Severnside Housing.  Shropshire Council and the Clinical Commissioning Group will determine a timeline of actions required, and will update you tomorrow regarding this.  As soon as all legalities have been confirmed, and all necessary work completed to ensure the property is safe and suitable for Emily’s habitation, keys will be provided to the CCG for distribution.

I'm interested in the timeline they speak of. I hope it will be one which doesn't delay any further and can be implemented immediately. Yesterday I emailed both authorities, pointing out a best interests meeting could remove any more blocks to Emily's care pathway.

In the absence of any information but aware of the leaving day having been passed, Emily has naturally decided she's coming home. 

This can't happen. Emily is being told this today and it's too dangerous for me to be there when they tell her this. It's too dangerous because Emily's anxieties are so high now that she is displaying behaviours that challenge again. I want to be there I want to make sure that this is explained to Emily in a way that assures her that something which she can't help, is not her fault. No one of this is her fault. But she'll pay the price of it everyday of her life.

When Emily moves she'll have a care package of 3-1. This is a 24 hr care package. I was that care package for 15 years. It's not that we won't let Emily come home, it's that Emily can't come home because she needs much more than any one one person can give.

I've been told online several times that I'm a bad mother. That I abandoned my child and that I'm abandoning her again now.

That's ok, people will comment and make judgements and assumptions based on things they can never understand. That's human nature.

There is nothing that anyone can ever say to me about Emily leaving, that is ever as bad as what I think about that. Judgemental people should rest assured that I have a troll permanently embedded in my brain, reminding me.

I know that i never wanted to be the 80 year old mother of a 50 year old learning disabled child who then loses everything when their parent dies. Who has been "kept safe" but then has to adjust to independent living when everything they have ever known collapses around them.

I made that determination when Emily was diagnosed at 3 years old. I knew her life would never be easy. I knew the world mocks and laughs and latterly has become hateful towards people like Emily.

I learnt that everything the rest of us take for granted would not be granted to Emily without a fight. Education, accommodation, health care, justice and freedoms are not routinely positively experienced by learning disabled people. 

Until the system extends more than a grudging hand of assistance, the experience of Learning Disabled people and those of us who love them, far more than can ever be expressed in words, will remain the same.

The easiest part of this transition should have been finding the house. It will be the second most traumatic move of Emily's life.

I'll leave it to the words of one of the finest people I know. Mark Neary. His blog is a masterclass in articulate determination but it was a tweet to me yesterday which sums it up best

 " So offensive that an LD person's life has to be remoulded to fit bureaucratic shite."



Sunday, 3 July 2016

Critical need, demanding help.

19 days ago, after yet another phone call from the Housing officer at Shropshire Council,  that left me with no clear picture of what was happening and with no one at that point from Adult Social care willing to engage directly with me, I recorded a message for Shropshire Council and tweeted it to them.

As you can hear, I'm frantic. That's what the fear of Emily being placed in a psychiatric hospital because she will otherwise be homeless, will do to a person.





If you’ve been keeping up with the events of the past few weeks you’ll know that it’s been quite the roller coaster in terms of the fact that the fight is ongoing because Emily still needs a home.

As the CCG and Shropshire Council battle it out, we’ve embarked on yet another weekend with no more news as to whether Emily will have the home she needs so badly.

The appliances we’ve bought for her are arriving here today because we’ve been told by Shropshire Council, that until the lease is signed the Housing association can’t release the keys. This is totally understandable and underlines once again, that with only a few days left until Emily is homeless, the lease being signed is crucial.

Last Monday it was decided that the CCG should sign the lease and sublet it to the Care provider. With that in mind the lease documents were forwarded to the CCG and the Care provider whose legal teams could then peruse them, again understandably.

On Thursday with still no news, I got call from the regional operations manager of the care provider, telling me that the documents had arrived, however it was the lease between the housing association and Shropshire Council, not the tenancy contract so therefore there would have to be an additional wait. 

She was really kind. But it was yet another delay.

The furniture was supposed to be delivered to the property on Friday. DFS have been extraordinarily helpful, kind and understanding in all this. They attempted to deliver the furniture on Monday but as there were no keys, they had to leave. They were very kind and offered to come back later the same day after making all the other deliveries. 


Gary and Kay from DFS wishing Emily luck


On Thursday when I heard of the latest delay I phoned them and they patiently unloaded the furniture from the delivery van to await further instruction.

The woman who phoned me yesterday encapsulated all of my feelings on this in her reply to my apologies. “Don’t worry” she said “We all have children”

On Thursday evening, after everyone had left for the day we had a second email reply from Shropshire Council. 
It was written by the Head of Service : Improvement and Efficiency. 
It detailed several things. It also referenced how I have been critical and demanding.


"I am responding to your email of Monday morning as Andy Begley is out of the office.
We have been asked to write to you by the CCG in order to explain the background and current position regarding XXXXXXXX Road. We have also seen the email you sent on Monday  morning and want to respond to both at the same time. Please be assured that despite your criticisms and demands of the Council we are working with the CCG to resolve the outstanding issues explained below with a view to facilitating Emily’s move in due course."

Yes oddly I am being critical and demanding. Because it feels that no matter how many times I keep reminding everyone of their responsibilities to Emily they don't seem able to hear me.

We are Emily’s parents but actually we have no responsibility under law for Emily. No adult in this country is responsible for another adult, even if they’re married to them. We're doing this because we love her and because if we weren't doing it, who would?

Shropshire Council are required to be co-operative and to work in partnership with CCG’s. They should have foreseen this need and demand in Emily’s condition and invited the NHS to attend Emily’s 14+ transition meeting. It would have given everyone involved in her care 5 years to plan for her transition.

This would have removed entirely a critical and now urgent need to provide the housing which Emily’s complex disabilities demand.

The fact remains that for the second time, in ten working days, Emily is facing being homeless.

The email continued :

"As you will be aware, Emily is fully funded by the CCG due to her continuing healthcare needs.  This means that Shropshire Council is unable to provide care and support (including accommodation) for Emily. If we did so we would be acting unlawfully. Nevertheless we work very closely with the CCG on a wide range of issues and where we can we will support each other on projects."

The lease could be signed by Shropshire Council, her rent will be paid for by Housing Benefit and the shortfall between what they feel she will realise in rent and what they can award her under discretionary powers, can be resolved. There is a wealth of medical evidence with can support this.

There can be no further extensions by the school to Emily’s stay. They have extended this twice now. CCG are funding a 3-1, 24 hr care package because that's what Emily needs and why Emily can't come home. A simply signature by Shropshire Council could resolve this. It could have been done 19 days ago.

I return to the email from Shropshire Council :

"Please understand that we were not obliged to do this but agreed to do so in the spirit of co-operation with the CCG and because we recognised that Emily had a pressing need for alternative accommodation that we could help with. It is therefore disappointing to keep reading that we are delaying the move."

Emily can’t be informed of any of this until the property is secured. Then and only then can we utilise social stories, start introductory visits and make this crucial and difficult transition easier for her. As it is she waits and worries.


As she expressed to her carers in a phrase she used, but didn’t fully understand, ten days ago “What is the plan?”

We are acutely aware that whilst this is a process, further complicated and delayed by legality, the following paragraph gave us something new. 
Additional fear. 
I've blanked out the name of the care provider for Emily's security:

"We need to seek approval from Severnside before anything can proceed and we certainly cannot release the keys (even if we had them – they are still held by Severnside) until it has been agreed between Shropshire Council, the CCG and XXXXXXX  who is responsible for what.  If, for example, either the CCG or XXXXXXXX did not agree with the conditions laid down in the agreement, it may be that this proposal cannot go ahead."

I gained no comfort from the end paragraphs of the email which contained the non apology, apology "I'm sorry IF...."  :


"In an attempt to minimise confusion we have encouraged the CCG to be your main point of contact.  They have the responsibility for Emily due to her continuing healthcare needs so this made sense.  I apologise if you feel that Shropshire Council have not engaged with you directly but I can assure you we have been working extremely hard behind the scenes to ensure this situation is resolved in the best possible way for all involved."

Emily should be the only priority now not "All involved"


"I hope this statement goes someway to explaining the situation, and also reassures you that we are all working together.  We are not in a position to hand the keys over yet as the CCG and XXXXXXXXX  are still considering the situation via their legal teams.  However, I can assure you that at the point we are able to we will ensure you are updated."

And still we wait. 

I think this whole situation is best defined and described by the words of Lord Justice, Sir James Lawrence Munby, President of the Family division of the High Court of England and Wales  in his summing-up of a case in 2010

I post them here, in direct response to Ruth Houghton - Head of Service: Improvement and Efficiency and her email, which I've referenced above.

Lord Justice Munby's words should be the gold standard, which all Council's should aspire to in exercising their duty and responsibility to all their residents. 

Emily is a person, not merely a "Cost driver"

 "The Local authority is the servant of those in need of its support and assistance, not their master" Lord Justice Munby.



NB (Monday 4th July) : This morning the school phoned and told us that as Emily's anxieties are now presenting as behaviour that challenges she had to be restrained. 



Wednesday, 29 June 2016

Meeting expectations

Why is it that people who have proven themselves to be untrustworthy always get really offended when you tell them that you don’t trust them?

Today we went to a five hour meeting of the principle people involved in their professional capacity, to manage Emily’s transition from residential school to a home of her own.

I called the meeting last Wednesday after it became obvious that the school staff were finding it more difficult to manage Emily’s rising anxiety, with absolutely no information with which to calm her.

Emily was told she would be leaving the school by the LD nurse who is in charge of the transition. We didn’t know he was going to tell her when he did, he made the decision, then and there and leaving date was reinforced with a countdown in sleeps.

Emily wasn’t being given any other information at the time. Just that she would be leaving the school. In the subsequent weeks care staff have been doing their very best to manage this. They’ve been asking for more information and I’ve been asking for more information but nothing final has been decided due to inter-departmental wrangling.

In lieu of any facts Emily did what any of us would do. She filled in the missing pieces for herself.

Last week I called the meeting because we needed to tell Emily more, because we needed to prepare Emily. I said we needed more LD support because at the weekend Emily would be phoning home and everyone needed a contingency plan. The advice from the LD team was still, don’t tell Emily anything.

On Saturday we got a call. Emily was very distressed but also she had vocalized the fact that this week, the week she was leaving, she would be coming home to live.

We haven’t seen Emily since the countdown began. It was deemed too risky. So added to all the fighting we’ve been missing her and she’s been missing us. I explained to her on the phone that we were resting. She was very upset but eventually, she accepted it.

On Saturday, I couldn’t bear the thought of giving her nothing once the countdown ended. Nothing except complete distrust in all of us, so I told her she could come for a tea visit. She was delighted.

The tea visit was today and it was clear that the LD team were not exactly happy but ultimately if they’d provided some kind of information, any kind of plan I would have acted accordingly. They didn’t so I had to make a decision.

I’m so so so SO sick of experts right now I can’t begin to tell you. I'm sure they're equally sick of me but on we go. We sat in the meeting with wall to wall professionals and I looked at them and wondered how any of them would deal with this situation, as a parent, if they were where we are.

Since Emily was diagnosed at 3 years old it’s been one long version of getting the diagnosis, putting her in the car and going home alone. Various psychologists, psychiatrists, paediatricians. LD Nurses, service providers, social workers, dentists and doctors have all given me their informed opinions and they have  mostly been caring and dedicated, compassionate and practical.

A few however have been sanctimonious, patronizing, over qualified, arrogant, management speaking, theory based, budget focused, career enhancing, robots.

Parent carers are their kryptonite. Because no matter how many training courses they attend or give, the fatal weakness for any superhero, is that a paper qualification doesn’t mean shit.  The shop floor is the only training that counts. The hours and hours and hours that you accrue as a care worker or a parent carer is all that matters.  For a parent carer this expertise multiplies exponentially.

Some parent carers are awful. But most in my experience and this extends to sibling carers and those caring for their parents, are wrought from love. Point me to the training course that qualifies anyone for that and I’ll accept that we are then equally capable, of deciding what’s best for my child.

Anyway the tea visit was fine. I had to relieve Emily of our landline phone which she’d decided to take with her, by pointing out that when she phones I won’t be able to talk to her if she takes it, but that aside it was just so bloody good to see her.

Emily looked at me once I stopped hugging her and said “Mummy has wet eyes” and I did. “They’re happy tears Emily” I said. And they were.

The net result of the meeting was that we have a sort of idea what’s happening next. The man from the Council had to endure Phil and my pent up frustration at the behaviour of his department for the last 3 weeks.  I walked out of the meeting 3 times and cried twice. But again it’s been a really tough time.

There were some unbelievably odd suggestions, like moving Emily to another residential placement, which given that we’ve spent 6 months focusing on single occupancy community living, made no sense at all.

It’s apparently a contingency plan. Oh ok then.

If Shropshire Council would just sign the lease on the bungalow it’s sorted, without the need for a contingency plan but apparently that’s not a possibility. He couldn’t say why but he would find out and let us know by the end of the day. He hasn’t. But I’m not surprised.

Then we moved onto the “terrible awful”. I ended up sobbing and begging again because I really can’t begin to explain what the idea of sending your child to a psychiatric hospital because “it’s not our responsibility to house Emily” does to a parent of a learning disabled child.

But Phil probably summed it up best when he said “If you try and do that to Emily, I’m phoning the police”

He’s right. To us the idea of someone doing that to our girl seems criminal. They had their court of protection meeting before we got there and apparently it’s for the deprivation of liberty that her locked front door will create. But as I said at the start and to them all in the meeting “Do you think we trust any of you anymore?”

Shropshire Council won’t sign the lease. The CCG can’t sign the lease and the care provider really shouldn’t sign the lease. I’m sure we’ll be getting a phone call in the next couple of days explaining why their solicitors feel exactly that way and so we’ll be back to square one. Every time we offer to do it no one answers us.


So trust is gone and hope is hanging by a thread and still we wait.

Tuesday, 21 June 2016

Still waiting, still hoping.





Yesterday we met with the Shropshire CCG.

This is the department of the NHS locally who maintain and fund Emily at her school.

This decision was made last year when Emily underwent a scoring assessment and became the responsibility of the Complex Care team due to her Continuing Health Care needs.

I was aware of Continuing Health Care when my Mum was deemed to have declined enough in her Alzheimer’s Disease to qualify. It meant she stopped paying for her nursing home care fees from the sale of her house and was supported by the NHS.

So now, her granddaughter is funded by them too.

I don’t normally talk about my Mum or my daughter in terms of funding, or budget lines or areas of legal responsibility. I normally talk about the people I love in terms of their personality, their achievements, their hopes and dreams and what they mean to me.

But as Emily is now facing being homeless in 9 days, including this weekend, I have to switch to viewing Emily the way she is interpreted by the system.

Fortunately for us, yesterday we sat with a decision maker who viewed Emily as the person she is. The man we spoke to saw our daughter as a human being, not as a budgetary responsibility. I was so grateful that I hugged him. We've felt so hopeless, so broken, so beaten. For the first time in recent days, we felt real hope.



It made me wonder when our country changed from being a supporter of people to a nation of budget lines and as with most things, it began with the sociological phenomenon that was Margaret Thatcher.

Quite simply she changed everything and turned a maxim into a mission statement. “When you have the country by the balls their hearts and minds will follow”.

The balls of this country were in championing the notion of a welfare state. The duality of healthcare and social care, meant that socio-economic factors did not return us to the time of the Poor Law.

Thatcher redrew the map and given an increasing elderly population, coupled with a move away from institutional settings, she began a process whereby the reliance upon the welfare state became a “shameful indulgence” not an economic necessity.

People she told us, sternly and determinedly should aspire to more. This message was delivered from the steely lips of a no nonsense grocers daughter, a wife, a mother, a woman who had navigated her court shoe clad toes through the halls of Westminster and dispensed a housewife’s practicality upon the silly men who held the reigns.

It was a simple but brilliant strategy and with the sword of compassionate conservatism and the shield of left wing winters of discontent, the country humbly and dutifully did what it was told, in case they were sent to bed with no supper and instructed to think about what it had done.

Aspire, achieve and succeed no matter where you come from said Mrs Grantham Grocer’s daughter. I am you, you are me.  Don’t look at my silly old Millionaire husband,  don’t notice my dubious friends like General Pinochet, don’t bat an eyelid at Jimmy Savile frequent guest and ally. Do what you are told, by me, because I’m you and so I can tell you, what we want.

What we wanted apparently, was to lose our industry, wage war, privatise our infrastructure and buy our council houses without replenishing the stock.

She turned her beady eye to the welfare state, fortunately her cabinet stopped her but she laid the seeds of that particular Joshua Tree.

Cameron and Osborne and Ian Duncan Smith, stretched out their arms to private companies like Atos and Capita and with a breathtaking diabolical “scrounger” narrative to a country rendered devoid of empathy after the “greed is good” 1980’s propaganda. In short they made her benefit denying dreams a reality.

The biggest sell off Thatcher achieved was our nation’s compassion and ability to discern the victim from the villain. Those who fought for their livelihood, who had worked for generations in mining, who wanted nothing more than to provide for their families and defend their communities, were branded monsters.

The NHS meanwhile, was dying quietly in a corner and it was thought best to withdraw all further treatment, as "nothing more could be done". Subsequent governments tried to administer first aid, sometimes involving heroic methods, but once the nation chose again, a poster boy sold to us on a myth of genuine understanding, we took the bait and found ourselves hooked, landed and fried.

There have been comforts to distract ourselves with. The Tabloids, will underpin the messages and myths. Blame and shame is big business. To be disabled, to be sick, to be poor, to be elderly, or to be a refugee, is now deemed to be a "lifestyle choice".

Which brings me back to now. Emily still needs a home. Emily is still disabled and Emily is now a disability benefit claimant. 

This isn’t a lifestyle choice, this is a vulnerable person who just wants a life.



She will access what little social housing remains and will do so from the chronically underfunded NHS budget which is still, thankfully, being awarded and distributed by human beings.


With only 9 days left before Emily is homeless we’re still waiting for the budget holders at Shropshire Council to let us know what's happening and when they will help her.

Thursday, 16 June 2016

13 days before Emily is homeless, we finally hear from Andy Begley.





I received the following email at 19.47pm on Thursday 16th June. At a time when we have no way of talking to anyone.

After 6 months of being told Emily would be found a property via Housing Services at Shropshire Council, it would appear they are no longer going to be involved with this. We were never told. We were told Shropshire Council were working in partnership with the CCG and we were allocated a Housing officer to source Emily a home.

With just 13 days before Emily is homeless, we now have no idea where we are going to be getting a property from. 
No mention is made of a housing provider. 
No mention is made of who we are to liaise with or speak to other than the CCG, which in terms of accommodation is completely new information. 
We are not aware that the CCG own any property that Emily would be able to move into in 13 days time. Probably because they don't.
No mention is made of whether the application for housing benefit which the housing officer told us we would be applying for, is going ahead or not.

We now don't know if we can still speak to the housing officer or if Emily still has a profile on Homepoint, which is the website and process to bid for social housing. Homepoint as far as we are aware, is provided by Shropshire Council.

We feel we have been cut adrift, that Shropshire Council have taken their "Housing officer ball" back and dealt us the added cruelty of the timing of the email, which means we have no one to talk to, at this time of night.

Is this anyway to treat a vulnerable 19 year old, learning disabled, autistic woman with epilepsy? Is this any way for the Council to treat their residents of Shropshire.  I'm posting it on my blog in the hope that someone will be able to advise us.

Please help as our local authority seem unwilling to do so now, by their own statement. It would have been nice if they had managed to spell our name correctly but that is simply the insult they have added to our grievous injury of wasted, precious time.  

Nik 




"SENT ON BEHALF OF ANDY BEGLEY

Dear Mrs Clarke

I am writing to explain as clearly as possible the Council’s position with regard to your daughter’s situation. Emily has, as you know, been assessed as meeting the criteria for NHS Continuing Health Care and therefore it is the responsibility of the Shropshire CCG to meet all her health and associated care and support needs, including reasonable accommodation. Staff within Adult Social Care and Housing, have sought to assist in this process by identifying what we think to be suitable premises where your daughter’s care and accommodation can be provided, but it is up to the CCG to decide whether or not it wishes to pay for this.

We are not responsible for meeting Emily’s health needs and have only become involved in an attempt to assist. I have liaised over the past few days with senior managers at the CCG and can confirm that they will remain the responsible organisation for managing Emily’s care arrangements (including accommodation requirements), and I understand that (name removed) will be contacting you as soon as possible.  To confirm; Adult Social Care is not responsible for the coordination and management of Emily’s package of care, please raise any questions or concerns you have over your daughter’s care and accommodation with the CCG, directly.

Yours sincerely

Andy Begley

Ffion Watson
PA to Director of Adult Services"