I was at London South Bank University giving a guest lecture to School Nurses the other day: Managing Health in the Digital Age. Explaining to them how useful Patients Know Best (PKB) is for school aged children with chronic long-term conditions like Asthma and atopic conditions such as eczema and anaphylaxis, diabetes, epilepsy, juvenile arthritis.
Young people hate other people telling them what to do. PKB holds all they need to know about their condition, and this helps them to become the expert in their condition and rather than the clinicians/parents/carers talking over them. They can be part of the team and offer suggestions as to how to manage their condition. Everybody learns with PKB. The key thing about PKB is that the patient is at the centre and every piece of information that goes through their portal is seen by them: Test results with guide range, Xray reports, prescriptions, communications between clinicians, inlcuding consultant, GP and specialist nurse… Most consultants create Personal Health Plans so the patient knows what to do to maintain their condition, what to do if it deviates from the norm and what to do in an emergency.
In the second part of the session I showed them some of the really useful sites that they could refer their patients to: HealthUnlocked and ‘Patients like me’ being the best places for patients to go for safe forums to help cope with their emotional acceptance of having their condition. Other notable sites include Contact a Family. I also told them about really cool apps to help with emotional wellbeing: Moodscope and Mind Apples. As they get the message across that you have to manage your emotions to have good mental health.
Most conditions have a charity to help and the school nurse is the ideal person to introduce these to the patient/family. For instance: Asthma UK, Diabetes UK, Anaphylaxis Campaign, National Autistic Society, Epilepsy Trust, Arthritis Care and these sites are the best to give advice on what Apps for Mobile phones some have even got their own apps. If these sites don’t have apps I advised them to keep an eye as most institutions are now developing apps now.