PKU in the UK

PKU in the UK

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PKU in the UK


June 14, 2012 in Uncategorized

Hi Everyone again, Just another little message, wondering if there is anyone else here from the UK? Also would love to chat to someone to share experiences of living with PKU both here and in USA (or elsewhere). I know very little about health care in the US but in the UK we have the national health service (NHS), which since the economic downturn has had to endure serious budget cuts. As a result I am finding it a struggle to recieve foods on prescription, as they are expensive and my local GP (doctor) has a limited understanding of the condition and cannot understand why I need to have them. It would be very interesting to hear how the system works in other countries and if the economic climate has had an impact elsewhere. I can't complain too much about our system of doing things as the specialist doctor I see at the hospital is fantastic and so is my dietician and they have been a great help since going onto the strict diet to try for a baby. I go to the hospital every 6 months for a check up and they are very thorough and I have to consider myself very lucky for them and my wonderful mum, who spends lots of time finding low protien foods and baking me tasty treats. I must also mention my brilliant fiance who is a great chef and spoils me a lot. Anyway I look forward to having some feedback and to sharing stories and experiences. Lucy xx

4 Reviews of PKU in the UK

  1. Registered: Jun 17, 2011

    Posts: 0

    Llandeilo, INTERNATIONAL

    Well i’m from West Wales, and have 2 children with PKU, seems we are very lucky as on the whole our health care professionals are great. We are about to start a new supplement so lets see how we go.
    Bes wishes

  2. Registered: Feb 27, 2008

    Posts: 0


    Hi I’m from the uk and have one daughter who has PKU. I am not sure if it’s different with under 18s but if we ever have any problem with our gp refusing to prescribe products our dietician or consultant will liaise with the gp and sort it out. You should not be missing out on products because of NHs funding cuts. Which hospital are you seen at? If the gp carries on being difficult I would consider transferring to a different gp.. This will be especially critical if you are on the maternal PKU diet and this should be emphasised to your gp. Hope you get some luck, but we have not experienced any difference in our low protein product supply since Isla was born in 2007. Sounds like you have a wonderful family supporting you too..l oh and just a thought the nspku may be able to help if all else fails, are you a member? Ruth

  3. Registered: Oct 12, 2010

    Posts: 0

    belfast, INTERNATIONAL

    i am in the u.k. also .thankfully i have no problem getting products from the gp. there are low protein foodstuff available at tesco with some exchanges but can add variety and you do have to count them in. your gp needs to update on pku and the diet for lfe.. . the range is called freefrom

  4. Registered: Aug 31, 2012

    Posts: 0

    birmingham, INTERNATIONAL

    Im from the UK
    and the part about the GP got me to write a comment
    I went to see mine reccently and she had no idea about PKU
    which in some respects I can understand as its not that common. But its just gets so annoying that you go to see them and they are asking you for answers about PKU instead of helping you.
    I have learnt that I have to do this alone!
    Altho I do get some support from my hospital.
    I just wish I was able to find certain meals that I can eat and not have to worry about all the time.

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