What we have to say Your stories Being a parent-carer for an adult child Mo cares for his adult son, Nav, full time. He talks here about managing Nav’s nutritional health. I’ve been a parent carer for my disabled 25-year-old son, Nav, on a full-time basis for the last 14 years. Nav was born with a heart defect and spent most of his young life in hospital having corrective heart surgery. With the heart condition, the surgeries, and a developmental delay caused by a rare genetic problem, although he’s 25 years, looking at him you would think he’s a young school pupil. But Nav has a tracheostomy breathing valve with oxygen link, a nasal gastric tube for feeding, and complex hourly medication routine. Because of his complex health conditions we’re always learning to better understand his health and lifestyle; it’s a case of keeping up with the research. Work in progress Nav has had so many procedures and his nutritional health was at the forefront. However, there was a sense of uncertainty as to how things would progress after each procedure – that came with everything including nutrition. Looking back, his life and care he received when under paediatric services were at a higher level than now as an adult. We have to chase HCPs, look up information, carrying out our own research to find out what’s best for our son. This will always be a work in progress. Taking part in the focus group When people first meet my son, the questions are always – What’s his age? He’s underweight, how much does he eat, what is he fed?? The nasal-gastric tube makes it hard to eat, although he loves his food. Because he’s small he needs to eat little and often, and because of a medical condition his body burns calories in different way to that of a healthy 25-year-old. I think one of the many reasons I took part in the Patients Association’s focus group on disease-related malnutrition was to educate myself and be able to pass that knowledge onto my family, the care team and my son's long list of consultants. Also, there was an element of wanting to find out if our mixed experiences were only linked around my son's complex combined health conditions or if this was a pattern; that it was hard to get information or help of any kind on nutritional health. The need for education Hearing group members’ stories made me feel humble, as they are sharing their most heartfelt issues. Sadly, it confirmed that the problems my son faces each day are real and very similar to other people’s. The focus group’s discussion showed there is a huge need for health professionals to educate patients and carers, but in a language that is very simple, easy to understand. In disease-related malnutrition, we want to know what signs and issues to look out for, clear steps to follow, and to be guided to the right path to ask for more advice to the right people. Easy to understand These new resources are in simple easily understandable language, with directions to further information, or where / who to ask for help. They’re useful, too, for anyone who is simply not sure if they have an illness that is affecting their eating habits or weight. It looks small but it’s a huge difference for people to have the confidence to reach out, to self-educate, to self-care, to ask, to seek, to know when they should ask for help looking at the signs and symptoms written in the guidance. I’d make a humble request to all, to look at these new resources read, follow, try the advice and as a must - pass on your comments to the Patients Association. Mo was a member of the focus group that helped developed our disease-related malnutrition resources.