Annual Conference – 12th Oct 2019

Improving Patient Access to Specialist Services and Treatments
10.00am – 4.30pm, Saturday 12th October
The Studio, 7 Cannon Street, Birmingham, B2 5EP

We would like to invite you to join us at our Annual Conference, this October in Birmingham.  Focusing on the importance of the patient voice and lived experience in decision making-processes to improve specialist service and treatment provision, the conference will:

  • Educate patients and their families on the current key issues with access, help them to understand what the various decision-making processes are and where the opportunities are for the patient experience to feed in, showing different perspectives.
  • Demonstrate the importance of working together to address the challenges with small patient populations and gaps in data and evidence, working in partnership with different bodies, clinicians, industry and patients.
  • Show success stories – how patient experience has made a difference, and empower patients to most effectively share their lived experiences.
  • Provide an opportunity for patients and families to come together to meet, share experiences, and hear from specialist professionals.

Confirmed speakers include Sheela Upadhyaya, NICE, Associate Director Highly Specialised Technologies, sharing the latest updates on the changes at NICE, the decisions it makes and the importance of the patient voice in those decision making processes, and Joan Ward, NHS England, Metabolic CRG Lead Commissioner who will talk about the way metabolic services are organised and the current service review.

There will also be a separate NextGen programme for teens and young adults aged 12-24, as well as disorder specific breakout sessions, including Urea Cycle Disorders.

The event will be free to attend.  Refreshments, lunch, crèche facilities (under 5) and activities for children (5-11 years) will also be provided.

10.00 – Registration and Refreshments
10.20 – Welcome – Lindsay Weaver
10.25 – Session 1: Overview of the Access Environment – Josie Godfrey 
An outline of the current issues, explanation of the different decision-making processes and how patients can participate
10.45 – Session 2: NHS Commissioning for Metabolic Services – Joan Ward, Lead Commissioner (NHS/CRG perspective) and Lindsay Weaver (Patient Representative perspective)
The role of the Metabolic CRG, how metabolic services are organised and the current service review.  The value of patient experience in decision making processes.

11.15 – Q&A
11.30 – Break

11.45 – Session 3: Appraisal Processes for New Treatments – Sheela Upadhyaya, Associate Director Highly Specialised Technologies (NICE perspective), Lindsay Weaver (Patient Representative perspective) and Professor Nick Shaw (Clinician Perspective)
The changes at NICE, the decisions it makes and the importance of the patient voice in decision making processes, including success stories where patient experience has helped positive outcomes. 
12.45 – Q&A 
13.05 – Lunch
14.00 – 16.30 – Disorder/topic specific symposiums:
     1. Urea Cycle Disorder patient and family session
2. Methylmalonic Acidemia and Propionic Acidemia patient and family session
(others TBC)

To book your place and individual sessions, please complete the form at the bottom of this page.

Sponsorship Opportunities
We are looking for sponsors to support this important event, and have a range of sponsorship packages.  If you are interested in sponsoring the conference, please contact


Looking for Accommodation? Please see some options below:

Macdonald Burlington Hotel
Nearest Station: Birmingham New Street Station
Walk to The Studio: 1 minute
Accessible Rooms Available


Staybridge Suites Birmingham
Nearest Station: Birmingham New Street Station
Walk to The Studio: 2 minutes
Accessible Rooms Available


Premier Inn Birmingham City Centre (New Street Station) Hotel
Nearest Station: Birmingham New Street Station
Walk to The Studio: 3 minutes
Accessible Rooms Available


Holiday Inn Birmingham City Centre
Nearest Station: Birmingham New Street Station
Walk to The Studio: 8 minutes
No Accessible Rooms Available

Further accommodations suggestions can be found on The Studio’s website here:

Annual Conference Pre-Registration Form

  • I would like to book my place at the Metabolic Support UK Annual Conference on Saturday 12th October 2019 in Birmingham.
  • **Metabolic Support UK will take every reasonable step to ensure that your child is safe and enjoys their time at the conference. However, Metabolic Support UK is not liable in the event of any accident/incident and the child’s welfare & safety remains the responsibility of the parent/guardian. Parents/Guardians will be able to access the crèche and children's activity session throughout the conference should any medication need to be administered. Please note that Metabolic Support UK staff or crèche providers are unable to give any medications.