A rider who has been under palliative care for 10 years owing to her progressive, life-limiting illness said that for the hour she spent with her “heart horse”, “I felt like me again”.
Lucy Watts MBE had a special visitor in the form of 17hh mare Edwina, also known as Eddie, at Fair Havens Hospice, Southend-on-Sea, on Easter Monday (5 April).
Lucy told H&H she was the first person to ride Eddie other than her owners, who bought her as a three-year-old.
“I’ve always had a different connection to her than to other horses,” she said. “I can go up to her in my wheelchair and she isn’t bothered, she’s so gentle. She just lays her head on me and lets me stroke her.”
Lucy, 27, said that “horses were her life”; as a child, she begged for lessons, and convinced her father to that end when she was five.
“They were my passion; I spent more time at the stables than with my mum,” she said. “I never had the joy of owning one but I had shares in about 20. My teacher would give me rescued horses and project horses and I’d bring them on; it was great fun.
“It wasn’t just the riding though, it was everything about being with horses, and they were my therapy.”
Lucy had health problems throughout her childhood; with her breathing, digestion and joints, and saw various doctors but “no one ever tied them together”.
“Then, when I was 14, I was life-threateningly poorly, and ever since, my life’s taken a different path,” she said. “I’m terrifying on paper; you look at it and say ‘Bloody hell, all of that!’ but they still don’t know what it is.”
Lucy suffers from a wide range of issues, including progressive muscle wastage, weak lungs and chronic pancreatitis.
“It’s a syndrome without a name,” she said. “There’s something that ties it all together, they just don’t know what it is. Almost every organ in my body is affected. My bones are weak, I have problems with my liver, and I get a lot of infections that they struggle to manage.
“I’m already 10 years beyond my original prognosis and have been able to live an amazing life with the great NHS, palliative and hospice care I’ve received.”
Lucy, whose MBE was awarded for her services to children with disabilities, has worked extensively with the NHS. A campaigner and advocate, she has helped the service in the areas of patient experience and personalised care, and helped other patients secure their personal care budgets. She has worked with charities and organisations including the World Health Organization (WHO), on palliative care and access to it, to the point that when WHO announced funding to improve access to palliative care, the organisation’s director general shared her story.
“I think my story really touched him,” she said. “A lot of my work has been on disability rights, and people being able to get access to the things they need.”
“I was told at 16 that I wouldn’t live to my 18th birthday, but I’ve far outlived my prognosis, having 10 years I should never have had and surviving against the odds dozens of times. I’ve lived an amazing life, giving back and making a difference through charity work, campaigning, consultancy, public speaking, training, independent advocacy, co-research and running my own business, which was only possible thanks to great NHS and palliative care.
“That was until September when my health took another turn, one that I’ve sadly not recovered from, and it is this change and rapid deterioration in my health that has led to me being an inpatient in Fair Havens now.
“The team are working hard to get to the bottom of things and keep me comfortable. The hope is we can figure out why I have so many infections and why they don’t respond to treatment as they should, and get on top of them, but we may not be able to do so and so I will have to accept things as they are.”
Lucy was full of praise for the hospice, whose staff try their best to “bring joy” to patients.
“They always ask what would make me happy,” she said. “I couldn’t really think of anything, but then I texted my riding teacher to say would she be able to come, and she replied to say she was going to ask anyway. I asked on the Friday, and everyone needed for permission was off for Easter, but they made it happen in three days.
“The staff here have gone above and beyond to make me comfortable. For them to work with [Eddie’s owners] Re and Dan to make this very special visit happen means everything to me. This truly embodies what hospice care is — living life and making memories.”
“MND has devastated lives for decades — it’s destroyed my life — and it’s something money can help with, but
‘If something does happen, I know I’ve had a fulfilling life; that’s all anyone can ask for’
Lucy said Eddie took the visit in her stride.
“She loved it,” she said. “She also met another lady, who’s very imminently end-of-life; Eddie’s made my life better and brought me so much joy, and she did to this lady too, she said it was a magical experience. You know how horses can get under your skin, and talk to you while saying nothing, but she does it more than most.”
Lucy said Re had often ridden Eddie to her house to visit before her hospice admission, but she had not seen her for two years.
“I haven’t done the things I enjoy for so long, and to see the horse I love so much when everything’s so difficult, and I get so frustrated and upset, was like going back to who I really am,” she said.
“It’s almost like a bereavement, not being able to see the animals I love, so it was a special moment for me, and for Re and Danny. For that hour, I was just me; not a patient, not a medical condition; I was just Lucy again.”
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