Take a chance and climb ….

Keep your eyes forwards you are almost there,

Don’t look back you’ll give yourself a scare.

Moving forwards is as hard as going back ,

But the future is unknown the last few years have been crap.

One hand at a time just pull yourself higher,

Til’ your whole body’s in pain and your lungs are on fire.

You’ll get there and see the world from a different view,

All of a sudden you won’t feel so blue.

JQ

Don’t Compare….

It’s really difficult when you have a chronic illness, condition or accident that causes disabilities.

I’ve made no secret about the fact I’m unhappy and fustrated with the body I’m in but I guess that’s natural to feel aggrieved when you can’t do what you used to be able to do etc.

Although it’s really difficult try not to compare lives . That was then this is now.

Everytime you look back and compare to your old life before you got sick then you will feel disappointed.

You have got what you have look forwards and look for new adventures and new things to try. Perhaps look for new clubs to join. Go to the gym do just a little and build it up. Buy a handbike . Adapt things.

If there’s one thing I’ve leant is that you’ve got to be pro active in finding things and adapting things for your family and you as there aren’t very many functional support services out there.

Take care of yourself and each other.

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/

Carers week my thoughts ,not holding back ………

It’s great to see blackpool carers and young carers representing what it’s like to live in the roles they do and raise issues in parliament . It’s also so fantastic to see all the support that they are getting from MPs radio stations and lots of charities.

It’s so disappointing that for carers week Barnardos the organisation that is supposed to be supporting Fleetwood Wyre and Fylde launched a fashion magazine.

It’s disappointing that we have no support from our local MP or local people or businesses . The activities planned for young carers in Fleetwood Wyre and Fylde for this week I’m sorry to say are

I’m feel bad and another mum and myself are trying to change it but we really need help.

These kids are important. These kids are missing out . These kids deserve support and a childhood that circumstance has robbed them of.

Nobody seems to care about young carers in Fleetwood Wyre and Fylde or socially isolated families .

Please can someone help this is so wrong.

If we can organise regular events at places once a month say each month. Get enough local companies to offer their services once a month ,then maybe we can get a time table together.

It’s going to need volunteers and community spirit to get it going though. If we don’t believe in these children, who will. They are already in places that there isn’t much to do.

I’m not asking for money, I’m asking for a little time, time and investment into the future of the next generation who are ultimately going to be damaged if they don’t get support and interaction like children should.

Joanne Quinnell