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.


  1. Thanks goodness there are still decision makers who view people with difficulties as human beings and not as beads on an abacus. It's getting awfully close to Emily's deadline - the strain on you and your family must be enormous.

    I've got all fingers firmly crossed in the hope that everything will turn out OK.

    You, Emily and other family members are in my thoughts - and in the thoughts of an awful lot other of people too - and I just hope that it all ends well for Emily.

  2. This is so heartfelt and sad to read. Here's to hoping Emily gets the care she deserves- as it is her right. Hopefully PHB models from the CCG's will one day enable Emily's care plan to be more patient centred.