NSPKU position statement and Brexit activity

The NSPKU has communicated concerns for disrupted supplies of prescribable products for the PKU community after the planned date for the UK to leave the European Union, on 29 March 2019.

Kate Learoyd (NSPKU Campaign Manager) and Suzanne Ford (NSPKU Dietetic Advisor) wrote directly to Matt Hancock MP, Secretary of State for Health & Social Care, and received a reply on 31 January 2019:

‘The Department appreciate your concerns and those of the members of the NSPKU about the effect of a no-deal scenario on patients living with PKU, particularly getting their prescribed dietary supplements. Ministers know how important these products are for people with PKU. The Department is making extensive preparations for a variety of EU exit scenarios, including planning for a no-deal outcome.

I can assure you and the NSPKU that supply of foods for special medical purposes, including the PKU range of products approved by the Advisory Board on Borderline Substances, is being addressed as part of those preparations. I understand that officials have told NSPKU about the Department’s contingency work, and that they have ensured all suppliers of PKU products have been included in that work.’

Chair of the All Party Parliamentary Group for PKU, Liz Twist MP also wrote to Matt Hancock MP on 15 December 2018 and received a letter on 31 January 2019 from Stephen Hammond MP, Minister of State (Department of Health & Social Care), saying the following:

‘I appreciate your concerns and those of the members of the NSPKU about the effect of a no-deal scenario, on patients living with PKU, particularly getting their prescribed dietary supplements. I know how important these products are for people with PKU.

The Department is making extensive preparations for a variety of EU exit scenarios, including planning for a no-deal outcome, I can assure you and the NSPKU that supply of foods for special medical purposes, including the PKU range of products approved by the Advisory Committee on Borderline Substances, is being addressed as part of those preparations.

Officials are working with the British Specialist Nutrition Association to identify the arrangements being made by suppliers, and to develop contingency measures that will ensure continuous supply.’

Lord Balfe, President of the British Dietetic Association, wrote to Matt Hancock MP on 20 December 2018 specifically requesting information about products for people with PKU and Brexit plans and received, on 21 January 2019, a response from Steve Brine MP, Parliamentary Under-Secretary (Department of Health and Social Care). Steve Brine MP said this:

‘Thank you for your letter about supplies of PKU dietary foods. I appreciate your concerns. The Department is working to ensure that the UK is able to cope with any potential delay at borders that may arise in the short term from the unlikely event of a no-deal scenario. We are in contact with representative bodies for manufacturers of specialist foods, including those for people with PKU, and are monitoring the situation.’

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
  • Control your own stock of prescribable products - this will be important in the coming weeks and months
  • Plan and work ahead for prescription requests or order requests
  • Move to a home delivery service - this 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

15 February 2019

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