Read on Twitter
Things I’d want to say if @NHSEngland had not abolished patient impact reports for the Kuvan decision: (thread)
1. That loving parents risk having their children removed into care because their children do not co-operate with dietary treatment for #pku.
#kuvanPatientImpact
1. That loving parents risk having their children removed into care because their children do not co-operate with dietary treatment for #pku.
#kuvanPatientImpact
2. Some adults with #pku were told in the past to could come off diet by the NHS. Now they have brain damage and cognitive impairment but the NHS won’t pay for modern treatment either. And it’s hard to weigh kale on digital scales with impaired cognition.
#kuvanPatientImpact
#kuvanPatientImpact
3. That children with pku can be bullied for their strange food and strange supplements and feel peer pressure to fit in, don’t manage their pku treatments and lose their educational potential. Kuvan gives teens more headway to cope.
#kuvanPatientImpact
#kuvanPatientImpact
4. Some families put locks on cupboards to stop kids stealing food. Families argue about teenagers eating crisps. Being the food police is not great for family relationships. Kuvan lifts the pressure.
#KuvanPatientImpact
#KuvanPatientImpact
5. People say the pku supplements are unpalatable but many find them nauseating or give them stomach ache, or mouth ulcers, or the runs. Try having one with pregnancy morning sickness. Kuvan reduces or eliminates pku supplements.
#kuvanPatientImpact
#kuvanPatientImpact
6. The effects of high phenylalanine can be different person to person. But commonly kids can get emotional or lose concentration. Adults report feeling foggy, unable to concentrate. Some describe feeling like everything being behind dirty glass.
#kuvanPatientImpact
#kuvanPatientImpact
7. A parent reported their child asks for crumbs off their plates or they catch her licking their plates.
#kuvanPatientImpact
#kuvanPatientImpact
8. The #pku diet is precise. If your toddler chucks peas on the floor, you should sweep them up and weigh them and record the unconsumed phe units.
#pkupatientImpact
#pkupatientImpact
9. When it’s so hard to deliver the diet and the cost of failure is brain damage is it any wonder that 59 percent of maternal carers have clinical levels of stress. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5740045/
These are real cases from the @NSPKU survey conducted in 2018 or from our helpline casework. I could go on for a long time! It’s frustrating we can’t say even any of it to the people who will decide whether to fund Kuvan. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6198120/
Maybe you could tell our story @ChrisMRiches
PKU is a rare disease. The impact is often invisible, or embarrassing or untold but it should not be ignored by the NHS. That is not how this is supposed to work.
Our families should have a voice. @LizTwistMP
PKU is a rare disease. The impact is often invisible, or embarrassing or untold but it should not be ignored by the NHS. That is not how this is supposed to work.
Our families should have a voice. @LizTwistMP
