We are fortunate to live in a place where PKU is diagnosed early, is relatively well understood and where patients benefit from a hard working and dedicated expert team of healthcare professionals.
However, as a rare disease, PKU competes with numerous other healthcare demands on the Irish state and health system. We believe that the fact that the condition you or your family member suffers from is rare should not mean that the treatment or care you receive is of less quality or priority.
Some of the areas that could make a big difference to the PKU community include;
- More research and scientific development into PKU and other similar metabolic disorders
- Access to all new food products and medicines
- An holistic treatment approach throughout childhood, including socio-psychological assessment and support where appropriate
- Effective transition from adolescent care through to adulthood and a properly resourced adult clinic.
These goals will only be achieved with widespread support and pressure from across our communities. We would like to support our members in helping to drive forward these and other initiatives, so do get in touch email@example.com if you have ideas, or want to know more about our campaign activities.
- Better food choice will mean all children having access to a better diet making it easier to follow
In Ireland, a diagnosis of PKU entitles people to a small range of supplementary foods paid for by the state. However, the list of products this applies to is not regularly updated and includes some that are now discontinued and excludes some of the newer, more appealing products.
Though some patients are able to get some of these products online or in larger stores, only those able to afford it will have access to this wider choice.
- Medicines must be considered a viable and reasonable option. Kuvan should be a treatment option for PKU children in Ireland.
Kuvan will not be effective for everyone with PKU, but for those that do respond to treatment with it, their diet and therefore their overall health and quality of life can be significantly improved.
At present, Kuvan treatment is not available through the Irish national health system. Kuvan is available across USA, Australia and much of Europe. We are urgently asking the government to fund treatment with Kuvan where doctors recommend it.
- More proactive holistic care of PKU throughout childhood and into adulthood is required.
It is widely recognised that rare diseases such as PKU are best treated when they are seen as part of a wider strategy. Ireland has a National Rare Disease Plan (2014-2018) with its own dedicated office, but there is little transparency or scrutiny of its progress.
Gaining a full understanding of the effect of PKU on a person’s physical and mental health requires a strategy that includes research and whole-person healthcare planning, so that patients receive optimum treatment, care and support.
Your TD (Teachta Dála) represents everyone who is entitled to vote within their constituency. They hold regular advice clinics so that voters can meet them personally. They can provide assistance to their constituents with a family or personal problem relating to a government department.
It is worthwhile telling your TD about your experience with PKU. Should you feel that there is something that could be done relating to your PKU care that may make a difference to your family’s life, your TD may be able to help.
Here is a sample of a type of letter you may want to send to your TD. It makes 3 main asks; i) access to more food choice ii) access to Kuvan iii) a better focus on the treatment of rare diseases.
Please copy it, use it and amend as you wish. Your TD will appreciate your personal stories and is more likely to respond with this approach. Please let us know if you send a letter, and in particular if you get a response.
Here is an example letter one PKU parent recently wrote, with help from our PKUtemplate letter, to a Minister.
If you have already written to your TD, and you are unsatisfied with his/her response, please see the TD follow up letter. It is from another PKU parent and can be used for some guidance on how to further communicate your issues.
Please see a copy of the recent correspondence sent from one PKU mum to Michael Healy Rae TD. This correspondence will be used by Michael during Leaders Questions in The Dail on Thursday 9th March 2017
PKU Leaders Questions Michael Healy Rae TD-1
Emailing your TD is easy. Everything you need to know can be found at the ‘Who is My TD’ website https://www.whoismytd.com
Alternatively please get in touch with us firstname.lastname@example.org to ask our advice.