Good news for Essex patient fighting for PKU treatment

Daniel Alexander from Harwich in Essex recently contacted NSPKU to ask for help with problems he was experiencing in accessing treatment for his PKU.

Daniel had not been on treatment for many years but began to be concerned about his health. Daniel decided to return to dietary treatment after an MRI scan and consultation with his hospital. However, the NHS funding authority in his area - North Essex CCG - refused to fund any treatment for his PKU. Daniel has been waiting for this decision to be reversed for two years, which he says was very stressful and frustrating.

The NSPKU wrote to Daniel's MP Bernard Jenkin who immediately took the action of writing to the Chief Executive of NHS North Essex CCG about the situation. We are pleased to say that the health authority have now agreed to fund Danny’s treatment.

Daniel said “I am relieved this has been resolved at last. I am looking forward to taking control of my PKU again. If any other people are struggling with getting the treatment or products they need you should challenge the NHS.” 

The NSPKU is raising the issue of restrictions on funding PKU treatment imposed by local NHS authorities in the All Party Parliamentary Group for PKU at Westminster to ensure that all people can easily access the treatment they need. The delay and stress Daniel had to endure is not acceptable.

NSPKU Helpline - 030 3040 1090