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Lucy Watts MBE on her battles to get the care she needs

Author: Leila Hawkins
07 September 2017

In this moving video 23-year-old Lucy Watts MBE talks about the battles she has faced with her mum to get the support they need while she struggles with complex life-limiting conditions. Her story echoes that of many other carers across the country except that as she explains here, in a cruel twist of fate her mum became seriously unwell.

Lucy, who lives with her single mum, Kate and older sister Vicky, is confined to a wheelchair and is forced to spend most of her time in bed. She also has to be hooked up to an IV drip for at least 21 hours a day as she is unable to eat and digest food properly.

Lucy was born with health problems that affected her muscles, bowels, eyes and joints, but despite many trips to the doctor her conditions went undiagnosed until she was in her teens.

These problems became worse over time, and she was initially diagnosed with hypermobile Ehlers-Danlos syndrome, a condition that affects the joints, skin, and internal organs.

However in 2016 she was diagnosed with a neuromuscular condition, but doctors were unsure whether it was a mitochondrial disease or a form of Muscular Dystrophy.  

In the video she says:

“In January 2008 at the age of 14 my life came to a halt. I stopped being able to walk. I became dependent on a wheelchair, I needed help with everything. I could no longer go to school so I had to continue my education at home, and we had to fight to get this. This was the first of many battles."

“You would think that when I became ill I would automatically get the healthcare I needed but we had to fight for that as well. I was accused of being lazy and my mum was accused of allowing me to be sick. "

"In March 2009 I stopped being able to eat. My gut could not tolerate, digest or absorb food properly. After losing six stone in six months, and fighting again and again for support as well as nearly suffering organ failure, I eventually started tube feeding.”

While Kate had been caring for Lucy singlehandedly while going to work at the same time, once she started tube feeding she was completely dependent on her. Lucy explains:

“I could not be left at home during the day on my own, so we had the first battle for a care package. Fortunately we won that battle and I had a carer come in while mum was at work."

But as soon as her mum returned home she was once again solely responsible for her care with no support, financial or otherwise.

Her condition continued to deteriorate, and on the week of her 16th birthday her paediatrician discharged her with no adult team to take over.

"Mum and I were once again on our own, fighting the system."

In 2011 she suffered a heart attack and almost died from malnutrition.  Eventually Lucy and her mum came across the J's Hospice in Essex who have provided care for her. One of the nurses was horrified at Lucy’s condition and got her admitted to hospital straight away.

Kate was trained to use intravenous equipment to administer Lucy’s medication for when they returned home, which made her even more dependent on her. At night Kate would drag a mattress to be next to her bed.

Then disaster struck when Kate developed a brain tumour that required surgery. Following that she suffered a stroke, and several seizures resulted in a diagnosis of epilepsy. Lucy says:

"I was facing my worst nightmare, the fear of losing my mum."

Now as Lucy's condition has worsened again her care package has become inadequate, and Kate is once again expected to care for her for free.

"My mum has not been appreciated for the millions of pounds she has saved the Clinical Commissioning Group in the time she has cared for me.”

“I should not have made it to the age of 23, but I squeeze out of life all that I can.” 

Lucy is a People in Partnership Member for Hospice UK.  

For more information visit Lucy’s website and Dying Matters

This article was originally published on the UK edition of ehospice

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