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"

Wednesday, 15 June 2016

Emily Needs a home




In fifteen days time, Emily our youngest daughter will be homeless.

It’s one of the most frightening concepts a parent can contemplate, but when your child has learning disability, autism epilepsy and operates to the cognitive ability of a five year old the concept becomes an all-encompassing terror.

We have to find a house and since the decision was made to remove Emily’s school placement in January, we’ve lived it everyday.

We haven’t been idle. I’ve applied for ESA and PIP sorted her bank account, and attended countless meetings. I’ve written articles, made films and tweeted as always, in support of disability rights and the issues that disabled people face everyday in terms of political and social disenfranchisement.

The CCG who are funding her care package haven’t been idle either. They’ve sourced a private provider, led meetings, organised professional involvement and supported us through this.

The care provider hasn’t been idle. They recruited staff identified Emily’s needs, met her and trained the new staff in de-escalation techniques.

The housing officer hasn’t been idle. She’s helped me complete the form for the website which offers social housing, sourced properties, liaised with Housing associations and kept me updated on the progress of any bids we’ve made and we’ve travelled all over the county looking at properties, none of which are suitable.

Throughout this whole process. the perfect property, the one that meets all of Emily’s needs in terms of bedrooms, perimeter and location has been lying idle for over a year.

On Monday with only 19 days before Emily is homeless we were told about it.

We contacted the housing association; they told us it was unavailable.

We contacted the housing officer; she told us it was unavailable.

It transpires that the house was selected a year ago and has been vacant ever since. Shropshire Council’s Adult Social Care Services have entered into a “contractual arrangement” with the housing association and the lease is due to be signed over. It isn’t signed yet.

Professionals, working with Emily, have told us that if no suitable property can be found for Emily, she will have to go to an Assessment and Treatment unit, in Birmingham.

The property we have found, the perfect one, the only one, is being renovated for multiple occupancy for adults with learning difficulties who are returning to the community.

We’ve been offered another house 45 minutes away. This is problematic for many reasons.

The care-staff were recruited in Emily's home town because the care provider was told as we all were, that finding a property for Emily here "wouldn’t be a problem".

For the staff to travel an extra 45 mins to and from work, will place an additional burden on them and impact them financially. There is a very real possibility that this care package could break down if additional pressures like this are placed on the care staff.

The transition will be very difficult for Emily. I’ve stressed from the beginning that this transition must be a long one with carefully managed introductory visits by Emily to the property and to the people she will have looking after her. 

We will need to be very close by, because the likelihood of Emily going into crisis and meltdown post transition is very high. This is another reason why the back up of additional care staff close to Emily's property is so important. 

Despite all our best efforts the property is still not found and now we have only 15 days to find one and introduce Emily to it. 

Travelling a distance to Emily in crisis is an added pressure.

The property in town, which has been earmarked for other occupants, is 10 minutes away. It’s empty it’s ready to move her into, it would solve her homeless crisis, it would be close to her family.

It would diminish the triple anxiety of new property, new staff and new location by one third, as it’s a familiar area she’s known from respite.

None of this appears to have made any impact on Adult Social Care. They have refused to speak to me directly, choosing instead to use the housing officer as a human shield and getting her to talk to us and others.

In the Care Act 2014 it states the general duties of a local authority:

(1)  The general duty of a local authority in exercising a function under this Part in the case of an individual, is t promote that individual’s well being.
(2)  “Well-being” in relation to an individual, means that individual’s well being so far as relating to any of the following
(a)  personal dignity (including treatment of that individual with respect
(b)  physical and mental health and emotional well-being
(c)   protection from abuse and neglect
(d)  control by the individual over day-to-day life (including over care and support, or support provided to the individual and the way in which it is provided)
(e)   participation in work education, training or recreation
(f)   social and economic well-being
(g)  domestic family and personal relationships
(h)  suitability of living accommodation
(i)    the individuals contribution to society

Of particular interest to me was this statement from Part 2 “Preventing needs for care and support”

(2)In performing that duty a local authority must have regard to –
(a) The importance of identifying services, facilities and resources already available in the authority’s area and the extent to which the authority could involve or make use of them in performing that duty.

I would say that an empty bungalow, being made ready for adults with learning difficulties but not already occupied by adults with learning difficulties, owned by a housing association ten minutes away from Emily’s family with a second bedroom for her 24 hour carer, ALREADY AVAILABLE IN THE AUTHORITY'S AREA, is exactly what the Care Act 2014 was written to legally enforce.

I would say that Emily’s emotional physical and mental well-being would benefit from the bungalow and NOT from being placed in an assessment and treatment unit.

I would suggest that the properties unsuitable for Emily, might be eminently suitable for adults with learning difficulties; perhaps able to use the Yale locks placed on the bedroom doors of multi occupancy units, to promote independence.

My heart aches for anyone in an assessment and Treatment unit. My heart is breaking at the idea that there is a property perfect for Emily but as we’re denied this she will potentially be sent to an assessment and treatment unit. How is this practical, sensible or morally defensible?

Emily is already deemed homeless and has been since the 2nd of June. Why are her needs of lesser importance?

Adult Social Care can ignore me, they can disrespect me, they can pay no attention to my mental health, my emotional well-being or my human rights.  

They can repeat the phrase “unavailable” ad nauseum to the people dispatched to instruct me of this message; but they can’t ignore the law and they can’t do any of the above to a 19 year old learning disabled, autistic woman with epilepsy, unchallenged.

Perhaps they won’t read this. Perhaps they will and simply ignore it.  I have 15 days to find Emily a house and I’m going to fight for her. I promised her I would when she was diagnosed at three, it’s promise for life.


If those in power in Shropshire wonder why I make such an unseemly, fuss about things, they should ask themselves, what would they do if this was their child, disabled or not.

My message to Shropshire Council here https://audioboom.com/boos/4693631-message-to-shropshire-council