Annual Conference 2019

This year’s Annual Conference was held in Birmingham on Saturday 12th October 2019. Over 150 patients, families,  healthcare professionals, pharmaceutical professionals and patient organisations joined us for the day to demystify the ins and outs of how patients can access specialist services and treatments.

Our Annual Conference is the highlight of our year, as we are able to meet our community and to share our knowledge to help improve the lives of those living with an IMD. We were delighted with the attendance of the conference and to hear from our speakers from NHS England, NICE and Birmingham Children’s Hospital about how patients and their families can get involved in important processes and make sure they can access the best treatment and services. Thank you to Josie Godfrey, Joan Ward, Sheela Upadhyaya, Nick Shaw and Lindsay Weaver for helping to demystify how new treatments are approved, and how patients can make sure they can access the newest and best treatments for their condition.  Please click on the links below to access the presentations:

Josie Godfrey – The IMD Landscape

Joan Ward – Commissioning of Metabolic Services in England and the Role of the Metabolic Clinical Reference Group

Lindsay Weaver – Patient Involvement in the Metabolic CRG

Sheela Upadhyaya (slides coming soon)

Nick Shaw – Highly Specialised Technology Appraisals for Rare Disorders – A Clinician’s Perspective

Lindsay Weaver – Highly Specialised Technology Appraisals for Rare Disorders – A Patient’s Perspective

Following the presentations, a Q & A session was held with all of the speakers, who were able to answer your questions about accessing new treatments and specialised services, a good opportunity for our community to ask all those burning questions!

The morning also saw the introduction of our new Chair, Elin Haf Davies, who brings a wealth of knowledge of the rare disease world from her time as a Metabolic Nurse and an employee at the European Medicine Agency. We are delighted that Elin has been appointed to our Board and look forward to working with her. However, we were also very sad to say goodbye to Nigel Eaton, who has been our Chair for 19 years. We are delighted that Nigel will be staying on as a Metabolic Support UK Ambassador and helping us co-ordinate our Service of Remembrance, which we hold every three years, to remember those that we have lost to Inherited Metabolic Disorders.

 

Lunch provided a great opportunity for everyone to meet each other and learn more about the services Metabolic Support UK provides, and visit our stand to see our new Health Passports, and learn about our Friendship and Community Ambassador scheme.

After lunch, disorder-specific workshops were held for patients and families with XLH, HPP, MMA, PA and UCDs. These sessions were a great opportunity for families and patients with these conditions to meet each other and learn from our team and each other about the latest developments in their condition. It was also a fantastic way for us to learn from you about how your condition affects you and how we can better help you.

Simultaneous to our main session, we held sessions for our young people, aged 12-25! Sally, our Young Person’s Project Officer, led the day along with speakers from a variety of healthcare backgrounds. We shall be releasing a separate blog about the NextGen session for you to hear more about their day!

We were delighted that so many people could join us for our conference and we hope that everyone enjoyed it!

If you attended the conference and have some feedback or suggestions of how our conference could have been improved, we would love to hear from you! Please email contact@metabolicsupportuk.org with your thoughts and suggestions.

Your feedback is invaluable to us and will help us ensure that future events are are relevant and valuable.