Latest News

Monday 7th June 2021

Changes to NHS England Data Collection

NHS Digital will be requesting patient data from GP medical records kept by GP practices in England as part of a new General Practice Data for Planning and Research data collection process. All patients will be automatically opted into this service and data will be collected from GP records commencing on Thursday 1st July 2021. You can read more about this process here.

If you do not want your patient data shared with NHS Digital, you can register a Type 1 Opt-out with your GP practice at any time. You can also change your mind at any time and withdraw a Type 1 Opt-out. To register a Type 1 Opt-out, you must complete the form here and submit this to your GP Practice by Wednesday 23rd June 2021.

If you require any additional/further information, please contact Jess Doyle on, who will be happy to assist.


5th October 2020

Lindsay Weaver leaves Metabolic Support UK after nearly six years service and dedicated commitment as our CEO

Metabolic Support UK (MSUK) staff and Trustees are sad to announce that our CEO Lindsay Weaver will leave her role at the end of this month due to ill health.

Lindsay has worked immensely hard to evolve and navigate MSUK through rapidly changing and at times incredibly challenging circumstances.  Lindsay has been instrumental in bringing forward an ambitious new strategy with a focused drive to meet priority needs, and develop collaborative evidence-based empowerment and advocacy programmes to ensure the maximum impact for individual patients and caregivers, collective patient communities and the wider stakeholders in the IMD community.

Board of Trustees Chair, Dr Elin Haf Davies “On behalf of all at MSUK, Board, staff, partners and the wider community I want to express my sincere thanks to Lindsay for all that she has done. Her vision and drive will serve MSUK well into the future. I wish her well for the future, with restored health and happiness, and much gratitude for all that you have done in serving our community.” 

The decision to leave has been a difficult one for Lindsay, as she shares her thoughts “After much soul searching, I have made the difficult decision to step down as CEO of this wonderful charity. I am full of emotions as I write this and reflect on my own personal journey from my first few days on the job up to this point now. It has truly been an honour to have served as your CEO for the last 5 and a half years. I did not know back then just how much I would come to love those people that I have had the privilege of working alongside every day. Like most journeys it hasn’t been a straight line but at the other side of every challenge was a success worth waiting and striving for.  I am proud of all that we have achieved together.

Of course I am filled with sadness that I will not be the person who leads the charity into its future, but I have no doubt that the incredible Trustees and amazing team of staff with their collaborative spirit and pursuit of innovation will ensure that the best days of this charity lie ahead of it. I have no doubt that the needs of patients and their families living with these immensely difficult disorders will remain at the forefront of all this charity does.

I leave with nothing but good wishes for the future and will always remain a supporter and champion of this great cause”.

Chief Operating Officer Joanne Byrne will step up as interim-CEO with immediate effect.