My family was referred to Demelza in April 2018 due to my then eight-year-old son having complex medical needs, which means that myself and my husband have to provide care for our son all through the day and night. Due to his needs, we are unable to have any form of childcare outside school hours. Social clubs and activities outside of the special school that he attends are not available to us.
Demelza provides a lifeline to my family and many families like ours because of the fabulous Registered Nurses and Health Care Assistants that can deal with my son’s complex health needs and those of other children.
The Nurses at Demelza understand the medical needs of the children in their care and can provide the lifesaving interventions that children with complex medical needs often need to survive the day.
Demelza’s Nurses and Healthcare Assistants look after our son when we as a family need a break from our caring responsibilities. This means that we can take time to be a couple and have a meal out, or simply relax at home knowing that our son’s needs are being met by highly trained Nurses who have the time to invest in the care of our son and really get to know him as an individual rather than just a name on a busy ward in a hospital.
Our son is cared for in a few different ways, day care in the hospice where he can access daily activities such as art and music therapy. Overnight care where he can spend a few days and nights at the hospice using the facilities and having his own short holiday. We also use Demelza Care at Home service, when Nurses and Healthcare Assistants visit us for a few hours at a time, to play with our son in his familiar surroundings. This gives us the change to get on with jobs around the house, take the dog out for a walk or simply catch up on missed sleep.
When we had a problem with our gas supply in January 2021 which left us without hot water or heating for 24 hours, the Demelza Nurses were able to look after our son at the hospice for the night and keep him safe and warm at very short notice.
One of the many roles that a Demelza Nurse provides is confidence building and training to parents and carers in the different types of care that our medically complex children need. This is a service that I hope as a trustee Demelza can expand as it is something that would have been invaluable to us as a family when we were sent home from hospital with a new drug regime and medical interventions that we were unsure of. We had no one to turn to for guidance and assistance in those first nerve wracking weeks and months.
To be able to spend time with a highly trained Nurse and having someone to work alongside us to build up our confidence in meeting the health needs of our son would have been wonderful.
Another vital role for a Demelza Nurse and another area that I hope as a trustee that Demelza end of life care will be an area of focus in the forthcoming strategy. This is a key service for Demelza that gives families a choice of how they spend their last precious hours, days or weeks with their child.
Demelza’s specialist nursing and care teams mean that hospital is not the only option available to families anymore. Families now have a choice, those final moments, however short, can now be experienced within either the hospice bereavement suite, or at the family home. Whichever environment a family might chose for those final moments, Demelza Nurses will be there as a reassuring team around the child and the family, making memories and giving space and time to grieve.
The services provided by Demelza Nurses can only meet a small proportion of the families like mine in desperate need of their expertise. Demelza wants to reach as many families in the community with children who have complex medical needs as they can, but can only do this if they have enough quality Nurses coming to work for Demelza."
If you would like to support families like Charlotte's by donating, please visit our main page for The Nursing Appeal.