Welcome to the Lucy's Light blog

More Questions, More Tests But Hopeful For Answers – Health Update 10-11-16

Today I had a very successful hospital appointment at the National Hospital for Neurology and Neurosurgery with the neuromuscular team, seeing Dr Ros Quinlivan. The outcomes of the appointment could be crucial for myself and my family, and turn everything…

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#ANurse4TheJs – Help Me Raise £40,000 To Fund A Nurse For The J’s Hospice

The #ANurse4TheJs fundraising page is located here: https://mydonate.bt.com/fundraisers/anurse4thejsHere is our campaign video: The J’s Hospice have been supporting me since April 2011, and within the first fortnight my hospice nurse saved my life. Since then they have supported us in a…

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Be Your Client’s Hero – National Advocacy Conference 2016

On Thursday 13th October I attended the Be A Force For Change - National Advocacy Conference 2016 run by Kate Mercer Training. I delivered the first keynote speech on my experiences with advocacy, titled “Be Your Client’s Hero”. It was…

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World Hospice & Palliative Care Day 2016 – Living & Dying in Pain: It Doesn’t Have To Happen

Today is World Hospice and Palliative Care Day, celebrating supportive/palliative and hospice care around the world. This year's theme is Living And Dying In Pain: It Doesn't Have To Happen. Palliative care has been a part of my life since April…

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Home Artificial Nutrition Week 2016

Most people have heard of feeding tubes, seeing kids with cancer and other illnesses with a NasoGastric Tube taped to their face. People know it’s possible to be fed through a tube in your nose down into your stomach. However,…

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Social Media and Chronic Illness – A Blessing Or A Curse?

Let’s face it, we live our lives online nowadays. We post, tweet, upload photos and videos and update our status whenever we see fit, detailing our lives for our friends and followers to see. We post about what we do,…

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NHS Wheelchairs, Complex Needs & Specialist Wheelchairs

On Tuesday 28th June 2016 I participated in a TweetChat with NHS PHB and others, discussing PHBs for wheelchairs to replace the inadequate wheelchair voucher system and hopefully improve the postcode lottery that currently exists. It was a wonderful debate…

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