Can we close the gap in PKU care?

Can we close the gaps in PKU care?

A Report on the ESPKU delegates Croatia Meeting, on 29th March, Westin Hotel, Zagreb.

The spring delegates meeting for ESPKU was arranged this year on the 29th March 2014 at the hotel that the ESPKU annual conference is due to be held in October this year. The hosts, Dalibor and Sonja, as part of the hotel visit, arranged a viewing and guided tour of the facilities and the hotel conferencing arrangements for the delegates at the beginning of the day. Logistical points were discussed and arranged with the conference event staff in preparation of the conference. The venue is suited to the needs of the conference, which promises to be an exciting venue within the inviting Balkan city.

The delegates meeting followed straight after the tour with an overview of the agenda provided at the start of the meeting by Tobias Hagedorn, the ESPKU secretary which in turn followed a warm welcome by Eric Lange the ESPKU president, which outlined a full and varied list of items to be covered in the full day meeting.

The delegate from the Boks organisation in Belgium started off proceedings with a presented overview of the arrangements and organisation of the Antwerp conference, both as a review and also as a way of passing on the experiences onto the hosts to consider for the Zagreb conference. Eric also outlined some of the challenges that the 2013 host encountered in the last few months in the lead up to the conference and thanked Nadia and the team in Brussels in ensuring that the 2013 conference went ahead. During the discussions the dining arrangements and PKU food were discussed, which is always a very important part of any PKU meeting. This included advice from the floor to this year’s hosts to ensure a spread of PKU food that includes countable as well as free foods. The discussions also included ways in which to sign the foods for the 2014 hosts to work on and fine tune.

Dalibor and Sonja from the Croatian society followed on the discussions to explain the arrangements as they stand for the conference and booking at Westin hotel 23-26th October in Zagreb. Registration for the conference will be direct with the hotel and by 15/9/14 latest. The conference programme that will be provided, like the NSPKU conference sessions but with the scientific programme running concurrently, with a common programme at the start and end of the conference. As always the delegates will be meeting separately on the Friday for the committee based work and AGM during the course of the conference weekend. The delegate rates have already been outlined and a draft booking form developed which will be outlined in due course, however reserve the dates in the diary now, as this conference is likely to be well subscribed from the current level of interest.

An outline of the planned 2015 conference was made and is due to be in Berlin in Germany hosted by DIG the German society which is reserved with the hotel and further details will follow in due course.

The next topic of discussion in the meeting was the International PKU day 28th June, and created a wide level of discussion. Following the ESPKU conference in 2013 it was reported in News and Views that a date had been set for a PKU day and this has been developed to be considered as an International PKU day following the French delegates outlining that there has been a an annual PKU day in France in June for many years. A round table discussion outlined the events that have already been planned on the PKU day. Croatia, as the host for the 2014 conference has arranged a pre-

recorded cooking demonstration to be televised as well as a patients meeting and documentary of untreated PKU planned, all as part of the awareness build up in the subject of PKU management in Croatia. It was suggested having a co-ordinated feedback at the ESPKU and French conference simultaneously, with links to the initiatives undertaken at the PKU day

The discussions moved onto discuss the publication of the Patients Perspective Paper published earlier in the year, and Tobias presented the significant interest that this developed around the world and beyond the PKU community into the wider journalism and media arenas. A link to this publication is available on both the NSPKU and ESPKU sites and is a recommended thought provoking read. This also linked and forms the major part of the Closing the Gaps strategy being employed and advocated within the European community by ESPKU and forms the basis of the work being planned going forward following the completion of the European Guidelines which is planned to be completed in 2015.. Tobias further outlined a presentation which will be available soon to outline the key points of the Patients perspective paper with a view to be presented in the delegate countries and around the PKU community, to help with the initiative.

ESPKU is due to communicate this to delegates and offer a template which can be adapted to the member state countries own needs.

A round table discussion facilitated debate and awareness about the common challenges and issues facing the various delegate countries, these broadly covered the issues of re-imbursement of supplements and medical foods and the variations between the various countries. Whilst we are lucky that our NHS system does not present too many difficulties with this, other than some individual GP’s questioning the provision of supplements in some isolated adult PKU cases. , tThe UK does join a small minority of European countries where the provision of BH4/Kuvan is not accepted routinely in those found to respond, however the development of trials as discussed at the recent NSPKU conference session may go some way to help address the issues faced in the UK currently. Another common theme raised by the represented countries was whilst there were national recommendations in several European countries, treatment varied between the PKU centres of treatment and something which the European guidelines, when they are developed and presented, may help to address in establishing a minimum level of treatment and optimal PKU care.

The discussions indicated a consensus in those present, that the development and provision of centres of excellence for PKU was a desired objective and something that links to the rare disease plans, previously outlined, and also to the Patients perspective documentation published earlier in the year. This is an area of debate that will be brought to the table at European level, and if you have a view, why not raise it through News and views and help develop a considered response that can be taken back as the NSPKU view at subsequent ESPKU meetings.

This is also important as the topic discussed in a fair amount of detail, with a brainstorming exercise, was to help develop a 3-5 year plan, and looking ahead of the recommendations work that is maturing, and more to the areas of PKU care provision in the future. This is due to be worked on and developed at subsequent delegate meetings, the next ESPKU conference being in Zagreb, Croatia 23rd - 26th October 2014. If these issues interest you, you can contact me as the ESPKU representative, write a letter to News and Views, learn about the wider European PKU care initiatives, or just wish to share experiences with PKU care from different countries, why not  

consider attending the ESPKU conference. It should prove to be an exciting and informative long weekend in the Balkans.

Duncan Noble-Nesbitt

ESPKU Rep and Advocacy