By Isle of Wight Observer
By Cassidy Ley
I live with multiple terminal and chronic illnesses, the most severe being a rare genetic skin condition that is both life-limiting and accompanied by numerous complications. Among them, the most critical is dilated cardiomyopathy, which has now progressed to end-stage heart failure.
As a result, I have been given only a few months left to live, with a heart transplant not being an option due to the complexity of my condition.
In addition, I face daily challenges including joint dislocations, osteoporosis, scoliosis, recurrent sepsis, severe hypotension, and constant infections. However, the most debilitating aspect is the relentless, severe chronic pain – from my skin, joints, spine, and bones. I have never known a pain-free day.
Over the past 20 years, hospitals have become a familiar reality, I have spent an unimaginable amount of time in hospitals – likely years in total.
First-hand experience
As a patient of both Mountbatten Hospice, and Naomi House and Jacksplace, a children’s and young adult hospice in Winchester, I have first-hand experience of the critical role hospices play and the immense challenges they face, particularly in securing adequate government funding.
Mountbatten Hospice provides exceptional medical care and has been instrumental in managing my symptoms locally, and the commendation it receives is both merited and extremely necessary!
However, adult hospices are not designed to address the unique social and emotional needs of younger patients, particularly in the context of respite care, and this is where young adult hospices come in. But despite providing highly specialised, essential care, these facilities remain largely absent from mainstream discourse, leaving a significant gap in awareness and support.
At 16, when my health declined, and no further medical interventions remained possible, I was referred to Naomi House and Jacksplace. To be told at such a young age that you require hospice care is profoundly daunting. Entering an adult hospice, where the majority of patients are elderly, can feel overwhelming. In contrast, Naomi House and Jacksplace offered an environment specifically designed for young people – bright, welcoming, and equipped with facilities such as a hydrotherapy pool, games consoles, and communal spaces tailored to teenagers and young adults. This compassionate setting made an immeasurable difference in helping me navigate the transition.
I was initially referred to Naomi House and Jacksplace by my cardiac team to initiate palliative care, ensuring that I receive specialised support as my condition progresses. Their primary focus is to maximise my comfort, particularly through expert pain management and symptom control, while co-ordinating my care in collaboration with my wider healthcare team.
Physical and emotional support
Crucially, they also provide respite care – offering not just medical oversight but a compassionate environment where I can find relief from the relentless demands of my condition. For my family, and particularly my mum, these stays offer a rare but essential reprieve from full-time care-giving responsibilities.
During these respite stays, I have access to invaluable resources, including hydrotherapy for relaxation, physiotherapy sessions to maintain mobility, and the opportunity to spend time with others who share similar experiences. These moments provide not only medical support but also a much-needed break from the often relentless realities of living with a complex and life-limiting illness. Naomi House and Jacksplace do more than simply treat patients; they create a space where individuals are seen, respected, and valued. Care is tailored to the individual, allowing young people to maintain autonomy, and a sense of identity beyond their diagnosis in a world that is often overwhelmingly medicalised.
Beyond expert medical care, these hospices provide something equally vital: the opportunity to connect with others facing similar challenges. They foster an environment that is not only less clinical but also deeply personal, homely, supportive, and enriched with moments of joy. The significance of this cannot be overstated. Naomi House also provides essential care for children with terminal and life-limiting conditions, a service unavailable on the Isle of Wight. The breadth of support these facilities offer is often underestimated; beyond medical treatment, they provide family services, specialist therapies, respite care, and bereavement support, ensuring that no family is left to navigate the most harrowing of journeys alone. Their commitment does not end with the passing of a child; it extends beyond, offering lifelong support to grieving families.
Treasuring each moment
Perhaps one of the most critical aspects of hospice care is its role in end-of-life support. As my health deteriorates, I know that Naomi House and Jacksplace will be there to ensure I remain as comfortable as possible, making each remaining moment meaningful and creating treasured memories with my loved ones. Their care extends beyond a patient’s final days, offering bereavement support to families, ensuring they are not left to navigate their grief in isolation.
Knowing that my family will continue to receive care and guidance after I am gone brings me immense peace.
The palliative care and pain management provided by Naomi House and Jacksplace have enabled me to embrace each day with as much comfort as possible. Now, as I confront the reality of having only months left to live, their support is more invaluable than ever.
What makes Naomi House and Jacksplace truly extraordinary is the unwavering dedication of its team.
From specialist doctors, nurses, and physiotherapists to carers, play teams, and volunteers, every individual plays an integral role in creating an environment where patients feel genuinely valued. Their compassion, expertise, and kindness transform these hospices into places of warmth, solace, and unwavering support. If I could express just one sentiment to them, it would be gratitude – gratitude for the memories they have helped me create, for their kindness that has never wavered, and for treating me as a person in a world that feels overwhelmingly medicalised, rather than merely as a patient. Unlike the often sterile and impersonal atmosphere of hospitals, they have always seen me for who I am, not just the illnesses I carry.
They need our help
It is imperative that we support charities such as Mountbatten Hospice, which provides exceptional care across medical, emotional, and bereavement services. Equally, we must champion organisations like Naomi House and Jacksplace, whose work is nothing short of life-changing. Yet, despite the essential services they provide, children’s and young adult hospices receive a mere 14 per cent of their funding from the UK Government, leaving them to rely overwhelmingly on charitable donations, sponsorships, and fundraising efforts. This is not simply inadequate, it is unconscionable.
Hospices are not luxuries; they are necessities. They offer care that is both essential and transformative, not only for those with terminal and complex conditions but also for the families left behind. And yet, these organisations are forced to fight for the funding they need to continue their work. With only three young adult hospices in the entire UK, including Jacksplace, in addition to a limited number of children’s hospices, and around 200 adult hospices, the reality is stark: without financial support, these lifelines will be lost.
Supporting these organisations ensures that young people receive the compassion, relief, and specialised care they deserve, not just in life but in the delicate moments leading up to its end. Without urgent and continued investment, we risk losing something irreplaceable: the ability to provide solace, dignity, and unwavering support to those who need it most.
How can something so profoundly necessary, so vital to dignity and care, be sidelined, neglected, and left to struggle for survival?