Let’s Go to the Moon

What shall I do today?

I’ll take the kids to the park to play.

Or maybe climb a hill ,

Reaching the top looking down is such a thrill.

Maybe I can go shopping,

Buy a new outfit for the weekend to go disco bopping.

Building sandcastles on the beach,

The sun so hot biting into a really juicy peach.

Go for an adventure on my bike,

Round mountains , lakes through dykes.

A bbq under the stars ,

Planning a trip to the moon and then Mars.

Maybe go to a gig to watch a live band,

Dance and laugh all night with a drink in hand.

Wake up !!!

I quickly dry my eyes,

No one to see my cries.

It was all but just a dream,

Nothing is what it seems.

The truth is hard to bare,

I’m stuck in a wheelchair.

Wait !!!

So am I going to just give up?

Is my life going to stop?

All isolated and alone,

My only company my phone.

Things have changed I’m not going to lie,

But every day I am going to try,

Go on adventures ,finding a way,

Knowing that I will definitely get there one day.

Joanne Quinnell

Supercalifragilisticexpialidocious !

As a child I spent ages learning that word and singing that song. Mary Poppins was the best nanny ever ! Then of course she went on to have adventures on flying beds ,what a woman.

I had a meeting the other day with the care provider who have the contract to look after young carers in my area (Lancashire). It was established that their contract is being met. They do run their service differently from a neighboring one and it isn’t fair to compare. I thought personally that being a charity they were raising money to do more beyond what they got paid in their contract for but…..

Right so let’s move on . I’ve been racking my brains around and they do take a lot of shaking and organizing. I started thinking about when my children were little and there were lots of things at health clinics, centres….

The main person that kept everything in check was your health visitor. Now my health visitor Lavinia was amazing. She was so supportive and efficient at her job. If you had a question she had an answer a leaflet or she’d get you one. The health visitor was central to my health and my child’s health and any other children in the family. She could make referrals, appointments, find support etc

This all seems to stop when your child grows up and goes to school. Normally this is fine as let’s face it you just want to get on and do things your way . No more 9 month check worries . You get settled into a routine and everything is hunky dory.

So when a spanner is thrown in the works, who is supposed to step in and help a family ? Who’s supposed to coordinate care ? Who is supposed to check the emotional and physical wellbeing of the children?

Obviously a parents first port of call when struck down with an illness is the doctor’s. Now you can’t get people involved straight away but there should be some kind of red flagging on the system that allows them to get some social support for a family surely?…

What about school? Should they have a red flag system because mum has stopped bringing the children to school, dad is now and when asked the children say mum is ill?

I think that instead of paying all these different charities and organizations, money would be better spent on family support centers in different areas which cover all the areas in one base. A bit like sure start but for older children . I know you have the wellbeing. I’m not sure if this is what that is about but if it is , it isn’t known about by doctors or anyone else.

Money is being used on services that help a handful from the area . Other money in primary care is being wasted on services which are pointless.

I’m ashamed to say that because of my illness my 2 younger kids have never had any of their friends around for tea as it just too much and I have a camping toilet downstairs . My 9 year old has never been invited to a school friend’s to play or for tea and my 7 year old has just once. Neither have ever had a birthday party because at my worst logistically it wasn’t possible but that is going to be rectified this year hopefully! As dad works mainly weekends if one of my older children aren’t around or I’m not great we are stuck in. This is not a normal childhood . I feel guilty as hell about it and it’s what keeps me motivated to try and get as physically strong as I can become.

What I’m trying to say in my round about long winded usual way is , young carers there is help if you fill out the assessment and say I need help I am a young carer I do everything I have no other life…….. so if you are having that assessment and feel that way, please say it. If you’re not so forth coming or you are too young to express yourself in that way then you will drift, but your childhood certainly won’t be that of a normal one.

I went to see my 12 year old in a performance at school. My chest was bad so I had my ventilator on but still kept frequently coughing. I’d taken my 9 year old as a treat (stay up late) . Every noise I made he looked at me with concern and needed a thumbs up that I was ok ,now that’s a young carer !!! I felt sad that my 9 year old was looking out for me but also proud of how sweet natured he is. He should be able to relax though.

I strongly believe that the key to helping young carers is to work with the whole family. It’s a process that needs to be gone through and someone needs to be central as it’s just chaos and counterproductive at the moment.

Until then I will do my best for this area to keep trying to set up monthly meets in different places for families.

If you are a local business who would be willing to offer your premises and services once a month every month then please get in touch.

Joanne Quinnell

https://www.facebook.com/groups/1556840474401957/