CONSIDERATIONS FOR PEOPLE LIVING WITH PKU
People living with PKU may be concerned about the impact of Coronavirus (COVID-19) and potential disruption. People with PKU are not considered a group at increased risk.
Coronavirus (COVID-19) and underlying health conditions.
Is PKU an “underlying health condition” which increases your risk to becoming very ill?
No.
There is no evidence to suggest that PKU reduces immunity. There is no evidence that people with PKU are at a higher risk of getting very ill from Coronavirus (COVID-19). People on a restricted low protein diet do not have reduced immunity, all the nutrients you need are in the protein substitute and it is important to take the prescribed amount each day.
If you experience symptoms and are concerned then it is important to follow the most current national health advice: –
https://www.nhs.uk/conditions/coronavirus-covid-19/
https://www.gov.uk/government/topical-events/coronavirus-covid-19-uk-gov…
And, as usual, your metabolic team can also be used for advice but please be mindful they are likely to under increased pressure at this time.
CONTINUITY OF PRODUCT SUPPLY
Family and patient activity; what can carers or individuals living with PKU do now?
We are not aware of any current disruption to supplies. There is no need to be concerned or to change your ordering habits (see below for individual company statements).
However, please consider sensible forward planning for your prescribed products:
- Consider ordering a slightly wider range of prescribable products as you may be eating slightly differently due to reduced choice in the supermarkets
- Controlling your own stock of prescribable products will be important in the coming weeks and months
- Keep a close eye on all your stock to avoid any stock wastage – check use by dates and rotate stock accordingly
- Make sure you are two weeks ahead; plan and work ahead for prescription requests or order requests
- Try not to over order as it could leave another person without. The manufacturers of low protein foods state they have no product shortages at present.
- 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
In these unusual and challenging times uncertainty can cause anxiety. We know the PKU community is strong at supporting each other often from a distance
If you feel particularly worried we are here:
NSPKU helpline – 030 3040 1090
Email – info@nspku.org or suzanne.ford@nspku.org
And on twitter – @nspku
The NSPKU has produced a letter to supermarkets which explains that people with PKU should have access to the supermarket during the times set aside for vulnerable people. You can request this letter by emailing the NSPKU or by calling the helpline.
CONTINUITY OF PRODUCT SUPPLY FROM INDUSTRY PARTNERS
Cambrooke:
We routinely carry several months of inventory of the raw materials required to make our products and also keep several months of finished products on-hand at our distribution partners’ facilities. In addition, we have increased production schedules and ordered even more raw material inventory. We will continue doing all we can to ensure we have sufficient supply available for you.
Firstplay:
Firstplay are making a big effort to increase our stock levels of Promin, Taranis and Metax products for our customers in the UK, to make sure we’re able to meet supply to customers who order through their chosen pharmacies. We also have several contingency plans in place to make sure we can still deliver both the orders and our usual levels of customer service in worst-case scenarios.
Our home delivery partners Dial-a-Chemist have put into place a number of business continuity plans to minimise the chance of any disruption to the day to day functions of the home delivery service and are currently well stocked with Promin, Taranis and Metax products.
Galen:
Galen has been continually monitoring the situation relating to the Coronavirus (COVID-19) pandemic outbreak and its potential effect to our operations and supply. Galen’s business continuity plans have been in place for some weeks. Our priority is to provide as unhindered and uninterrupted a service to our clients and patients as we possibly can.
To secure supply of PKU EASY Microtabs product for ongoing prescription to patients we plan to temporarily reduce the sampling service for the product in the UK. This reduced sampling measure will only be in place for a few weeks and we plan for normal sample supply to resume following this period. We apologise to any patients awaiting a sample of our new PKU EASY Microtabs and want to assure you that this is a short term delay and that you will receive your sample as soon as possible.
Mevalia:
Mevalia is closely following developments in the outbreak of Coronavirus (COVID-19) and the continuity of supply to our patients; meeting your needs is our priority. Deliveries have been arriving from Europe since the start of the outbreak and deliveries have been unaffected.
Please be assured we have robust measures to ensure patient care needs are met, both through wholesalers and our delivery partner Dial-a-Chemist. We recognise that the current situation can cause anxiety and we want to reassure you we are committed to the best patient care.
Nutricia:
We would like to reassure you that the availability of our products and the continuity of patient care through our Nutricia Homeward Service is a priority. We are fulfilling orders as usual and have supplies for everyone who has been prescribed our products. Please continue to order your products in their usual quantities as this will help you, and everyone else, get regular, uninterrupted supplies.
We have been monitoring developments closely since the beginning of the Coronavirus (COVID-19) outbreak and working hard to ensure the continuity of our products and services. We are in regular dialogue with our factories and suppliers so that we are in the best possible position to respond quickly to the evolving situation. We recognise this is an extremely anxious time for everyone so please be assured we are doing everything we can to make sure that you get the products you need.
Vitaflo:
Vitaflo is closely following developments in the outbreak of Coronavirus (COVID-19) and is working in close cooperation with the wider Nestlé Health Science group. At the present time, we do not foresee any potential impact on the supply chain for Vitaflo products.
Vitaflo is in regular dialogue with its co-manufacturers and raw material suppliers so that we are in the best possible position to respond quickly to the evolving situation whilst ensuring continued supply of Vitaflo products to our customers. In the meantime, please help us to ensure that supplies are not disrupted by continuing to order Vitaflo products in their usual quantities.
19th March 2020
NSPKU Medical Advisory Panel
