NSPKU position statement and Brexit activity

The NSPKU have been reviewing the preparations being made by government for the possibility of a “no-deal” Brexit to prevent disruption to the supplies of prescribable products for the PKU community after the planned date for the UK to leave the European Union on Thursday 31st October 2019. 

We have some concerns that the ACBS group of products – prescribable products regulated by the Advisory Committee on Borderline Substances do not necessarily “fit” the strategies so far proposed by the Department of Health & Social Care for ensuring continuity of supplies in medicines generally. For instance, exchanging or substituting equivalent products or medications is a potential strategy for medicines that would be less effective in prescribed dietary treatment. We have been seeking detailed assurances from the Department of Health on the plans made for the products used by people with PKU.

The NSPKU have been working on Brexit since last autumn and are continuing to communicate with other parties such as low protein food/protein substitute manufacturers, the Department of Health and other professional bodies. We will continue to review our position as we anticipate getting further detailed assurances from these parties. The NSPKU have contacted low protein food/protein substitute manufacturers and have received assurances that they are making their own contingency plans.  

Family and patient activity: what can carers or individuals living with PKU do now?

  • Keep a close eye on all your stock – check use by dates and rotate stock accordingly
  • Avoid any stock wastage
  • Try and plan and work ahead for prescription requests or order requests
  • Being on a home delivery may enable companies to calculate supplies needed and enable better stock control
  • Keep your dietitian informed of any stock issues and let them know of any concerns or problems as soon as they arise

30th August 2019