“Just knowing I can call and speak to a nurse day or night is a comfort. They are all so kind and understanding.”
– Tina, Mother of HPN patient, Dalcie
Dalcie is 22 and a lovely young woman from Tenbury Wells. She has been receiving Home Parenteral Nutrition (HPN) at her home for the last 2 years. Dalcie has a learning disability and is cared for by her mum, Tina. Tina shared their family’s story and told us what it’s like being referred by the hospital team and adjusting to seeing your home up for a specialist clinical treatment.
Dalcie is the youngest of my three children, with an older brother and sister. She has a learning disability which means she has a mental age of two and has no speech – so I am her eyes, her ears and her voice.
Dalcie was born with a learning disability and we have cared for her, her whole life. One day, when she was 18, we realised that something was seriously wrong. She had gangrene of the bowel and over the next three years she developed a hernia which then resulted in an ileostomy. It was then that Parenteral Nutrition started at University Hospital Coventry and Warwickshire, with their specialist team.
After two months, they said we could go home. I didn’t even realise Dalcie could have Parenteral Nutrition (PN) at home. It all happened so quickly. It’s a lot to take in. It’s life changing and it’s a huge condition to understand. Because I am Dalcie’s ears, eyes and voice, I take in all the information, as if it’s my body and so I can explain to the rest of the family.
When they told me about Lloyds Clinical and having treatment at home, I was thinking, ‘we’re not clinical at home’, ‘how do I keep everything clean’, ‘I’ve still got my other two children, how is this going to work?’. So, when they said we could leave hospital, I was pleased and scared.
One of the nurses from Lloyds Clinical, contacted me to start to explain everything. She was great – you really need someone to talk to, as there are so many questions at the start. This bit is really important, as we needed a lot of nurse support and reassurance. They told us that 16 boxes of medical equipment would arrive – and that’s quite overwhelming. It’s a really big change. We had to find somewhere to store all of the medical supplies and find somewhere in our home that the nurses could work from when they call. I didn’t understand any of the medicines, but the Lloyds Clinical nurses are there to help you and they work very closely with the hospital teams to explain everything. They are very kind and understanding.
In the beginning it was scary, but it was always a relief to see a familiar face – that is so important, seeing and speaking to someone you know. The familiarity is reassuring, especially when you are feeling raw and upset. It’s a very personal, big thing to have people come into your home. I want them to know me and Dalcie and I wanted to get to know them – they are in my house and it’s a personal thing.
They really understand my family’s circumstances and they listen to us. It’s very important for us that I know exactly when the nurses are coming, because Dalcie has a routine. And all the nurses know now, what our routine is – Dalcie is in bed by seven o’clock, so they come to us between 4pm and 6pm. They’re all very thoughtful and when the nurses are here, if something takes longer, they always stay as long as it takes and they won’t leave until it is sorted.
They are a safety net and just knowing someone is there when you need them, makes me feel safe. In the early days it’s a lot of worry. To feel safe at home with a medical intervention is the most important thing. Dalcie is hooked up for 12 hours and I know that there is a number I can call if I need to speak to someone. So just knowing I can call and speak to a nurse day or night is a comfort. They are all so kind and understanding.
Dalcie has now put on weight and she’s doing well. We started with support six nights a week and she is now down to four nights – so we have Monday, Wednesday and Saturday to ourselves as a family.
Lloyds Clinical have been amazing and they are keeping my daughter alive. Having treatment at home is a way of getting life back together. The nutrition team at University Hospital Coventry and Warwickshire work very closely with Lloyds Clinical and they are amazing too.
We love them all and everyone has pulled around Dalcie. Without them, we wouldn’t be home. My message to other families is, don’t be scared, it takes time to get used to it, but it works out in the end. We feel so lucky that Dalcie can have her treatment at home.
We know home parenteral nutrition (HPN)
We’re one of the most experienced providers of clinical care in the UK providing specialist clinical support at home to paediatric and adult patients with conditions resulting in intestinal failure.
Our dedicated team of healthcare professionals understand patient conditions and work to the highest standards set by the NHS. Our specialist HPN nursing teams, provide expert training and support to give patients the knowledge, flexibility and skills to manage their nutritional needs.
