Rebecca and her Mum at Inspire

Hayley and Rebecca’s story

Hayley and Rebecca's story

In 1996, sisters Hayley (now 42) and Rebecca (now 39) were diagnosed with a rare neurological condition Hereditary Spastic Paraplegia (HSP). As their conditions deteriorated, they were referred to The J’s Hospice in October 2015.

They now live in accommodation near Clacton together and, although Hayley is now 42 so no longer looked after by The J’s, the help they have both received has contributed to them being able to live fulfilling and independent lives, as well as helping their parents Ann and Joe too.

“When we were told that both of our girls had HSP, it was very scary. My daughters were independent, bright young things who were fully mobile and learning to drive – but their health problems changed all of that.

“We found ourselves working with two care teams, holding double the conversations and finding out that information was not being shared.

“When a palliative care professor recommended that we contact The J’s Hospice, I wondered how they could help; I assumed that hospices only provided end of life care. I was desperate but would it just be adding another layer to these multiple conversations?

“Thankfully, I had no reason to worry. The J’s Hospice instantly understood the traumas and burdens that my girls were going through and gave me someone to lean on – they were just fantastic.

“The J’s Nurses are lovely and will do everything they can to help. They had all the information on Hayley and Rebecca so they could talk to the other healthcare professionals on our behalf to co-ordinate their care. It took that pressure and anxiety off me and gave me back some quality time with the girls.

“When they first started to support our family, they helped us to set up an ‘end of life plan’ for each of the girls. This means that the ‘not so pleasant’ things are in place so we don’t need to worry about having those discussions if the girls get ill – we can just focus on caring for them.”

Ann, Hayley and Rebecca’s mother

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Published in 2019

“The team at The J’s instantly understood the traumas and burdens that my girls were going through and gave me someone to lean on.”

Ann, Rebecca’s mum