Ever wonder what mummy does all day?

When bug was a few months old, Daddy came home from his day of sitting and drinking hot tea to a mountain of washing up and pondered what I had been doing all day.

His punishment was to be forced to read a detailed diary of my daily activities every evening. It ran to several pages and after day three he surrendered, apologised profusely and the incident was never mentioned again.

I came across the diary when looking for a bit of paper to write ‘milk’ and ‘bread’ on (without that list I would go to the shop, forget why I was there, and return with chocolate) and snorted out loud at my naivety.

There is no doubt I had my hands full. But basically my day was spent breastfeeding then cleaning up the vomit when it all came back up again. I still clearly had time to take notes. (One stand out joy of breastfeeding that no one tells you about is that you have no choice but to sit on the sofa for long periods of time watching TV).

Almost two years down the line, if I were to repeat the exercise, I would be handing over a bit of paper with half a sentence where I tried to record a task, then broke off to deal with some mayhem, then totally forgot what I was doing.

Think the office is hard work? Think again...

Think the office is hard work? Think again…

I have lists for everything – not just the shopping – because my brain is too full of thinking two steps ahead of the toddler to keep track of anything else.

Toddlers (especially nearly two-year old toddlers) are emotional wrecks. Finely tuned machines, the slightest tilt to the complex inner workings and it is THE WORST THING EVER.

I am woken at 5.40am to ‘mummy, mummy, mummy, mummy, mummy’.

Ahhhhh crap, too late to persuade bug to go back to sleep, but not yet six, which everyone knows is the cut-off point for acceptable getting up time.

Buy small amount of coming round time, with ipad and cbeebies.

‘Downstairs, downstairs, downstairs.’

Open one eye to find bug stood at the stairgate with arms full of contraband, including a dog toy, three pairs of socks and one of my shoes.

Three meltdowns in the space of 20 minutes because of the wrong cereal, wrong bib, wrong spoon, but once ‘strawberry wheat wheats’ have kicked in there is a happy five minutes spent throwing a ball at the dog’s head.

Make a cup of tea then think about getting dressed.

Bug will not be moved from cbeebies (once declared better than mummy and daddy, which is a pretty valid point). No problem, I am nothing if not flexible I shall fetch the clothes to the living room.

Take nappy off and realise too late have forgotten wipes.

‘Mummy poo.’

‘Yes darling you have done a poo’.

‘Pooooooo.’

‘Let’s get you cleaned up, noooooooo don’t touch it.’

‘Uh oh mummy.’

Pat’s finished delivering his letters, telly off, realise have forgotten tea which is now cold, make new cup.

‘Let’s go play upstairs so mummy can get dressed.’

Cut to ten minutes of selecting random objects that ABSOLUTELY have to come upstairs too.

Narrowly avoid standing-on-rocking-chair-potential-head-wound incident (bug not me, although I wouldn’t put it past myself), decide leaving danger-seeking toddler while I have a shower might be a bit risky and have quick wash at the sink.

Look round the corner to find wall covered in purple eyeliner.

‘Uh oh mummy, paper.’

‘Yes darling we only draw on paper, but that’s a wall,’

‘Sorry mummy.’

Breaking off about once every 30 seconds for crisis management, an hour later am dressed, with brushed hair and teeth and some blobs of mascara passing for make up.

Turn around to find blue eyeliner all over the duvet (have no idea where these eyeliners are coming from, I do not have time to wear eyeliner).

‘Uh oh mummy, paper,’

This happens when you turn your back for a few minutes

This happens when you turn your back for a few minutes

‘Yes darling we only draw on paper, but that’s the bed.’

‘Sorry mummy.’

Right, what have I forgotten, oh yes my cup of tea.

Make fresh cup (after waiting the obligatory five minutes for bug to round up different collection of treasured household items for the journey back downstairs).

Shove food, nappies, spare clothes, and wipes into massive bag so we can get out of the house and get rid of some excess energy (bug’s not mine, I have no excess energy).

Another three meltdowns because of wrong shoes, wrong coat, and the realisation that no we cannot take the dog to the museum.

‘Time to get in your pram.’

‘Walk.’

‘How about you sit in your pram with monkey and duck and you can all eat some rice cakes.’

‘No walk’

‘It’s too far darling, we’re going to the museum where you can run around and play with your friends.’

‘No walk.’

Quick mental calculation involving our lateness and closeness to meltdown (bug and me) and we set off walking with the pram transporting duck, monkey and bag.

Right what have I forgotten? Never drank the tea, I could really do with a tea.

Five minutes down the road.

‘Carry’.

‘Why don’t you sit in the pram, you can have rice cakes?’

‘No carry’.

‘Ok how about shoulders?’

‘Cuddle’.

‘You’re too heavy now for mummy to carry a long way.’

‘Yes’.

‘So you need to go in the pram.’

‘Yes’.

‘Will you sit in the pram with monkey and duck?’

‘Yes’

‘Great here we go.’

‘Noooooooo carry’. Throws self to pavement sobbing in dramatic fashion (bug not me although it did cross my mind).

Mental note, add ‘buy toddler sling’ to a list.

At 10am, make it through the doors of the nice cool, calm museum with a very dead arm, look longingly at the café serving nice hot cups of tea, as bug runs off to destroy the shop.

And that’s only the first few hours… We’ve barely got going. I wouldn’t even want to admit to what happens in the run up to teatime.

Daddy no longer asks me what I’ve done all day. He can see the exhaustion in my eyes. He does bathtime while I tidy up, it all goes quiet, he comes downstairs and we both have a nice hot cup of tea.

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Anger and outrage at Ellie’s benefit battle

My previous post about Ellie and her battle to obtain employment support allowance from the Department of Work and Pensions due to her severe life-long disability, has struck a chord with many.

That includes GPs who called the “all too common” situation horrendous and pointed to “loads of completely unjustified failed assessments and benefits cuts” and said they too were having to write sick notes for patients severely disabled from birth. Others pointed out their advice was being ignored.Screen Shot 2014-11-25 at 17.01.52

Dr Chaand Nagpaul head of the British Medical Association’s GP negotiating committee said he agreed the “system was grossly unfair to the most deserving”.

After we published Ellie’s story of having to wait a year or possibly longer to have the approved medical assessment that would judge if she was ‘fit to work’, we have been inundated with people sharing similar experiences.

Louise, Ellie’s mum, could barely get out of the school playground when dropping off her younger children for people saying the same had happened, that it was disgraceful and even that they had given up pushing for benefits they were entitled to because they did not have the energy to fight it.

The local paper in Bradford did a prominent story after reading about Ellie’s situation and articles are being planned by the nationals.

It prompted Ellie’s Liberal Democrat MP, David Ward, who we alerted to this blog to say he would personally take on her case.

He was quoted in the Telegraph and Argus as saying it was “bureaucracy gone mad”.

And local disability services said medical assessments were becoming more frequent.

The DWP also responded to media requests for comment stating that in cases like Ellie’s they “require supporting medical evidence from the claimant’s GP or medical specialist before we can process the claim”.

Funny that, because they have plenty of evidence, including GP and consultant letters and a previous medical done by their own department. Ellie’s GP had offered to do the medical herself but was refused.

Here’s the breakdown of the information they have, which makes you wonder what on earth their own medical assessment would be checking for…

  • Unconditional disability living allowance award (by DWP) at higher rate for personal care
  • Full run down of Ellie’s disability (supported by doctors) including:
    • Can’t read or write
    • Can only say a maximum of three words together
    • Austism
    • Mental age of five
    • Gasostromy feeding tube
    • Bowel and bladder incontinent
    • 70% curvature of spine and limited mobility
    • Life expectancy was around 16 years ago

Ellie also has the added complication that she cannot cope with strangers and there is absolutely no way she would let any new doctor carry out any sort of medical. Her own GP has to set up appointments on a weekend when no one else is around.

To get the photo for the newspapers, Ellie’s younger sister had to stand out of shot singing Hokey Cokey.

There is no additional information to be gained from an employment capability assessment other than to check that everything that every professional has told the DWP so far is not a lie.

After ATOS walked away from the £500m work capability assessment contract early amid criticism of how the medicals were being done, US company Maximus have now been appointed.

I have no idea if this change is the cause of the year-long backlog but its fair to assume the waiting list would not be so long if the professionals in cases such as Ellie’s were listened to at the start.

The media coverage and MP support may well expedite Ellie’s case but you should not have to rely on a journalist cousin with a blog to have a voice.

It does not change the fact that thousands of others will not have the option of kicking up a fuss or just give up feeling they will not get what they are entitled too or are finding the whole process too difficult or stressful.

Surely there has to be a better balance between checking people are not claiming benefits they are not entitled to and leaving the most vulnerable without funds to pay for vital care, equipment and support.

A good start would be listening to the GPs who know their patients history inside out, and considering every application with compassion and a little bit of common sense.

Think the benefits system is unfair? You don’t know the half of it…

The current government has done a very good job of manipulating our collective understanding of the average benefit claimant.

Whether it’s the single mother with 12 children, getting a spanking new council house built or the layabout with the ‘bad back’ or ‘depression’ who is still able to enjoy expensive trips abroad and energetic hobbies, we have bought into this idea that too many people are cheating the system.

In reality the Department for Work and Pension’s own figures show that fraud – actual lying rather than error on the part of the claimant or officials which makes up most of any overpayment – accounts for less than 1 per cent of the total bill and is not increasing.ellie1

But the drive by Iain Duncan Smith to crack down on benefit cheats and to make absolutely sure that there is not some work you could be doing somewhere, is now putting so much strain on the system that the most vulnerable people in society are not having their needs met.

I know this because one of these ‘most vulnerable’ is my cousin Ellie, who lives at home in Bradford.

Ellie is 19, nearly 20. She left school a year ago at a graduation ceremony that had everyone in tears. Like most 19 year olds, Ellie has strong opinions on what she wants and likes.

But that is about the only thing Ellie has in common with your average 19 year old because Ellie was born with a part of one chromosome missing. The doctors did not really know what this incredibly rare condition meant for Ellie, it was a guessing game. But they did not think she would survive to adulthood.

She defied those expectations and 38 operations later, Ellie is living with one kidney, 70% curvature of spine, holes in heart that were repaired with coil, a ventriculoperitoneal shunt which relieves the pressure of fluid on her brain caused by meningitis, and a tethered spinal cord that has left her with bowel and bladder paralysis.

Ellie is funny and stubborn and has a big attitude but also has the mental age of five and cannot read or write.

One of the aspects of her severe learning disability is that she cannot cope with change and feels most secure in her specially adapted room downstairs (she has limited mobility and cannot walk far or climb stairs) watching Mr Benn DVDs and listening to the Hokey Cokey.

Her brain injury means she has to be sedated to sleep every night.

Now she has left school she attends a day centre run by Home Farm Trust three days a week, where she receives one-to-one care.

You would think that the extent of Ellie’s condition would make any benefit claim simple. She is by no definition physically or mentally capable of doing any kind of work, nor does she know what work is.

She is an adult by number only, in reality she is a young child and she needs round the clock care. Her condition, laid down in her DNA, will never improve.

This is reflected in the fact that she has been awarded disability living allowance for her care and mobility needs unconditionally, that is her parents will never have to reapply on her behalf, because officials accepted the severe, unchanging nature of her condition.

Bureaucratic farce

As soon as she left school last July, her mum Louise also applied for employment support allowance for Ellie.

She filled in a lengthy form stating that Ellie could not as much as make a sandwich for herself, let alone change her own colostomy bags or pads, that she does not and never will have the mental or physical capacity to work.

The GP provided a ‘sick note’ outlining the severity of Ellie’s disability and all the relevant documents were supplied.

Yet this was not enough. Ellie must undergo a medical assessment, they said. Even though she had already had a medical assessment by the same department, this did not count and the fact of her claiming unconditional disability living allowance was not classed as evidence.

Ellie, who is quite often in pain, has to be sedated to be able to sleep

Ellie, who is quite often in pain, has to be sedated to be able to sleep

This week, Louise was told that they had reviewed Ellie’s file and decided as she was not in a position to leave the house, they would have to arrange for an assessment (a private costly assessment done by recently appointed company Maximus) at home.

For this there is a six to 12 month backlog. And after this year of waiting, when the assessor comes, takes one look at Ellie and apologises for putting them through this process, there is no guarantee of back payment, and while she waits for this bureaucratic wheel to clank round she only gets half of what she should.

Why, you might wonder, does someone who has no concept of money need the benefit at all?

Because it will pay for transport, and £84 worth of incontinence pads a month (cutbacks mean she does not get enough), and the part of her Home Farm Trust sessions that her parents are currently paying for, and her respite care, just to list some of the costs that being severely disabled brings.

Every professional that cares for Ellie is outraged. Her GP (who has to send a new sick note every three months) and social worker have both written letters. The DWP is essentially accusing them of lying about Ellie’s needs.

They are starting from the position that we are all out to cheat the system and like naughty schoolchildren we must be told who is boss.

While Ellie is waiting more than a year for someone to decide if there might be a job she can do, she’s losing out on £200 a month. That is £200 that her parents are having to find to provide for her basic needs.

We know of others who are going through the same rigmarole, and I do not believe it is cynical to assume the general strategy is to hope you will give up and not bother fighting for what you are entitled to.

There also seems little point in making you jump through the hoops, fill in forms, send in documentation, if the computer will always say no, and insist on an assessor to check you are not trying to cheat.

I wonder if there is ever any circumstance in which they will accept someone is unable to work without putting them through this protracted process.

Those front line workers dealing with Ellie’s case, are embarrassed and admit the system is broken but have to follow protocols from on high.Ellie2

I would love to see them try to do an assessment on Ellie, they are unlikely to get so much as a blood pressure given she needs to be sedated just to have her hair cut. She cannot answer any of their questions and catch her on a bad day she will probably tell them to ‘get in the bin’.

If you believe that a measure of a society is how well it treats its most vulnerable members, this would suggest we are failing.

Yet every other agency involved in Ellie’s care, from health to social care to education has been fantastic and able to apply common sense, fairness, and decency.

For her family who have worked tirelessly to provide the best quality of life they can for Ellie to be treated like beggars or criminals is appalling.

Ellie and thousands of severely disabled adults like her are not ‘grey areas’, they should not fall between the cracks of the system, they should be given what they are very clearly entitled to and given it promptly.

These are the stories we should be telling on the front pages of our newspapers, the stories that should shock and shame us.

Maybe then we would remember why we have the benefits system in the first place.