On 29th November I was privileged to speak on behalf of parents at the Disabled Children’s Partnership manifesto launch at Parliament. It was fantastic to see so many charities and influential people recognising the struggles families like mine face daily. It was refreshing to feel seen and heard, that people are acknowledging the #SecretLivesofUs and wanting to see change.

 

Here’s a little of what I said…

The last twelve years have felt like an uphill struggle;

yes, full of love and joy but hard – very hard.

At times, I have wanted to give up; to crawl under a rock.

I have heard friends say, ‘I don’t know how you do it’

My response is easy,

I do it for love and because I have no choice.

And that is why parents like me carry on, pushing through

sleepless nights,

medications throughout the day,

the breaking of bad news,

the cut backs to respite care,

the shrinking of essential provisions,

because WE have no choice.

I am not surprised by the research Amanda presented today – that nearly a quarter of family carers reported to care for 100 hours a week.

Some people ask me whether I still nurse?

What I tell them is,

‘I nurse more at home, than any of the paid work that took me around the world.’
And even when my son goes to school I’m still carrying out caring duties;

ordering repeat prescriptions,

writing emails to local authorities and social care teams,

fighting for help,

interviewing carers,

planning schedules, time sheets, appraisals.

 

And when my son is home, I try to juggle the care of my other two children alongside his high demands.

Every trip to the toilet requires hoisting and about 20-30 minutes of one to one care. With a crying 2-year-old clinging to your leg, it can take much longer.

Sam requires one person to spend an hour to help him get up, stretched and dressed every morning.

He needs someone to turn him and support him through the night – every night.

From 5 in the morning to 11 o’clock at night, I am administering medications via his PEG tube for more than 8 times.

So much of our lives can get consumed with keeping him alive and out of hospital, that the rest of living can be squeezed out.

 

When the research talks about 100 hours of care.

That is 100 hours – Every week

Whether I’m sick,

it’s my birthday,

Christmas,

whether my other children are having their own crisis

 

100 hours a week without the benefits or protection of employment law.

As a nurse, I wasn’t allowed to care for more than 12 hours in a row –because I wasn’t safe.

As a nurse, I had to take a break every few hours 

because otherwise I wasn’t safe.

As a nurse,

I had annual leave, a wage and occupational health

As a parent carer, I have none.

As a parent carer, I am expected to care for my son all night and then deemed safe to drive my kids to school.

As a parent carer, I am required to take clinical decisions at my son’s bedside, without the support of a medical team.

As a parent carer, I am not eligible to rest breaks or holidays.

As a parent carer, I am sometimes discarded a ‘Mum’ and not given equal footing at the multidisciplinary team meetings.

As a parent, I know my child better than anyone else.

As a parent, I do it all for love.

But love is not a replacement for sleep.

Love does not give me more time or more hands.

Love is not a substitute for rest or practical family support.

I’m going to let you into a little secret…

We don’t want help.

 

What I mean by that is, we don’t want to want help.

We want to do it on our own.

We don’t want to need to be supported because we’d quite like to either not have the problems we face or have enough arms and bodies to cope with them.

 

The fact is we NEED help.

This is our one and only life.

This is the only childhood my children will ever experience and I want them to be part of a family that thrives, not just survives.

When I choose to allow a professional to…intrude in our home and carry out an assessment.

When I share with them the personal details of our lives, I do it because I believe it is worth the sacrifice.

When families like mine ask for help, we aren’t taking the mick.

We honestly don’t enjoy people traipsing into our homes at quarter to seven in the morning when I still have crusty dribble stuck to my cheek and matted bed hair;

we do it because without it we can be found weeping in the corner or screaming at our other kids.

 

The fact is many parents like me don’t ask for help because

they are too busy struggling and fighting already,

they don’t want to need it

and we don’t want people thinking we don’t love our children.

 

When it’s so difficult to get support, when you have to fight so long and hard it makes us parents feel judged.

 

In my local area, children need to be seen as ‘at risk’ to warrant annual assessments by the social care team. It doesn’t matter how complex my son is, I have to be falling apart to the point of damaging my kids before our needs are significant enough to be considered for assessment and provision.

 

I came here today by train and tube.

Today, when I heard the words ‘Mind The Gap’ it reminded me that families like mine LIVE in the gap.

We live stretched between wanting to do it alone and needing help.

We are split between arguing for new equipment and not even wanting it in our home.

We are torn between limitless love and limited energy.

We live in the gap caused by a postcode lottery of provision.

We are left standing in the gap between policies and legislation and the reality of care we experience.

 

The reality is – services are being cut from every direction.

Health sent a specialist nurse to assess our needs but then a panel of strangers, who haven’t looked into the whites of my tear-stained eyes, will get to decide if we ‘deserve’ her professional recommendations.

Social care hasn’t assessed our family’s needs in 3 years.

Education has failed to produce an EHCP, one year after starting the process.

And me and my family are left trying to ‘mind the gap’.