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Mikey’s story: Mum Chevonne and dad George are exhausted.

Every day is a bit different with Mikey, he has an undiagnosed condition which was discovered after birth. The first signs that there was something going on, were shortly after birth when Mikey was struggling to breathe and feed.

For the first two years of his life, Mikey lived in hospital whilst all the experts were trying to understand what was going on. Mikey, now has many care needs including a tracheostomy, which he relies on for his breathing and a feeding tube directly into his veins.

Mikey’s mum Chevonne and dad George are exhausted. It has been recommended that Mikey needs two to one care with someone with him 24/7. They have been given a care package, which the family explain has never been fulfilled or met.

There is no back up for us, if a nurse phones in sick for us in the evening, last month for instance no one turned up for the shift at 8’oclock so I didn’t get time to have even half an hours sleep. I was awake for nearly 48 hours in the end, caring for Mikey

Mikey's mum, Chevonne

What happens when the  24/7 palliative support isn’t there?

Mikey’s parents have struggled to get the right care they need, Chevonne explains “I was left for nearly 48 hours with literally no sleep. A lot of Mikey’s care needs are quite invasive and you have to be on the ball to do it, it was quite scary. We have had nothing but trouble trying to get the care we need.”

What impact does this have?

This has a big impact on their family. Mikey’s mother Chevonne explains, “On Tuesday, I did a full night shift and a day shift with Mikey by myself. I still had to get the other children off to school and do the normal house work, as well as care for Mikey. We have two other daughters and older son, so we are trying to be a normal family and caring for Mikey as well.”

Not having enough care, the family are under extreme amount of pressure, Mikey’s mum explained “We are all under a lot of stress and I rely on my two daughters to help me with a lot of Mikey’s care, when they come in from school and before school. They should not have to worry, they should be able to live a normal life and they shouldn’t have to constantly worry before they go to school that Mikey is going to be OK. They should not have that worry on their shoulders.”

“The whole system needs looking at. There are so many others that are in our boat too. It shouldn’t be that way, you should be able to concentrate on being a family and not just the care side things.”

Families like Mikey’s need your help, so every child can get 24/7 end of life care in England.

Worryingly, our new report highlights that not every family is getting the support they need. Our interactive online maps show that the extent to which seriously ill children and their families can access services which achieve these standards is very patchy and depends on where they live.

We are particularly concerned about children and families’ access to end of life care at home, 24 hours a day, seven days a week, supported by nurses and senior consultants who have the knowledge and experience to meet their often complex needs.

We need your to help. Use our maps to find out the situation in your area. Sign our open letter to the government to ask them to take action.

Family stories