Update – NSPKU Brexit related work

NSPKU liaison and advocacy work around Brexit preparations for prescribed products for the PKU community.

Summary of communications...

In August 2019 NSPKU wrote to the Secretary of State for Health and Social Care (Matt Hancock) and the Minister of Health (Chris Skidmore);

NSPKU has communicated with the companies who manufacture and distribute the products and their trade association (British Specialist Nutrition Association). NSPKU has also liaised with the British Dietetic Association. All companies and organisations have been engaged in Brexit planning work.

In September 2019, Liz Twist MP and Ian Austin MP of the APPG for PKU met Baroness Blackwood (Parliamentary Under Secretary of State at the Department of Health and Social Care).

In all our communications and advocacy work, NSPKU has emphasised the need for uninterrupted supplies to PKU prescribed products and that the government must ensure that dietary products are considered in contingency planning.

Summary of government response (letter from Baroness Blackwood to Liz Twist) received 17th September 2019...

·      NSPKU has a “categorical assurance” that the supply of specialised nutritional products are part of the Brexit planning programme and are receiving specific focus.

·      The government is in direct communication with suppliers “to develop contingency measures that will ensure seamless supply”.

·      “My department, as part of our EU Exit preparations, is implementing a multi-layered approach to continuity of supply, which consists of stockpiling where possible, securing freight capacity, changing or clarifying regulatory requirements, procuring additional warehousing, working closely with industry to improve trader readiness and putting in place the National Supply Disruption Response to manage potential shortages”.

·      Baroness Blackwood asks that patients should not change the way they order or use their prescribed products.

NSPKU reaffirms the common sense and practical advice we gave at the beginning of 2019 for families and individuals...

·      Avoid any stock wastage

·      Keep a close eye on all your stock – check use by dates and rotate stock accordingly

·      Make sure you are two weeks ahead, plan and work ahead for script 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

19th September 2019