First Patient Workshop

26-Jun-2013

We’re excited to announce that on the 26th of June we will be holding a free patient workshop. Patients and caregivers will have to chance to meet up with each other, learn low protein baking recipes and receive advice on the upcoming disability benefit changes.

Our Patient Support Officer, Lesley Harrison, has been speaking to Fate Special Foods, a small family company who produce baking mixes suitable for those on a low protein diet. It was founded by Eileen and Martin Green after their two daughters, Faye and Kate, were diagnosed with Phenylketonuria (PKU) – a rare and inherited metabolic disorder where treatment is a low protein diet.

At the one day workshop, Fate Special Foods will demonstrate their cooking, baking up some delicious recipes low in protein. This will be especially helpful to anyone on nitisinone in the UK, as those receiving it from the National Alkaptonuria Centre have been advised to undertake a protein-modified diet. The demonstration will show how diverse the products are and how they can be adapted within an individuals' own diet. The company will be able to answer any questions you may have about the products.

Lesley has also spoken to Disability Rights UK, who will speak at the workshop. They will be discussing the disability changes taking place in 2013 for the UK, giving advice about Personal Independence Payment (PIP), which is replacing Disability Living Allowance (DLA), and future welfare reforms.

Shirley Judd, a specialist dietician working at the National AKU Centre in Liverpool, will be holding a session discussing how to maintain a healthy diet with AKU. It will be based on the latest advice for an AKU patient's diet, including what considerations need to be taken when modifying your diet whilst taking nitisinone.

Last but not least, the developers of Patients Know Best (www.patientsknowbest.com) will be explaining how to use the online platform, which allows patients access and control of their medical records. Patients who attend the National AKU Centre in Liverpool are given access to the system. They will be discussing the benefits for a patient, with a question and answer session. Attendees will also have the opportunity to suggest how the system could be improved to meet the individual needs of AKU patients'.

Those who attend the workshop will walk away with a bag full of goodies! These will include:

-  Samples of baking products from Fate Special Foods
-  A low protein cook book
-  Booklets on benefits in the UK
-  Leaflets on the National Joint Registry

-  Patients Know Best brochure

The workshop will take place on Wednesday the 26th June in Peterborough in the UK and lunch will be included. It is open to all patients and relatives who would like to attend. More details of the event, including timings and the venue, will follow soon but if you would like to know more right now, please contact Lesley by emailing her at [email protected].

Further patient workshops and events in different parts of the UK will hopefully be organised soon, so please do get in touch with us if you have any suggestions.

We look forward to seeing you there!




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