Coronavirus

Our coronavirus response

The current coronavirus crisis is a global pandemic and health emergency.  Patients living with Inherited Metabolic Disorders, and their families, need to take extra precautions to ensure that they stay well during this time.  Many are considered extremely vulnerable and have spent several months shielding.  The demand for our services is greater than ever.  

Our small team quickly adapted to working in new and different ways to address the needs of our patient community.  We continue to work tirelessly to provide a frontline response to the crisis by:

  • Reducing the pressure on the NHS by answering queries and providing advice and information at point of contact, reducing the need for them to contact their metabolic teams.
  • Working closely with metabolic centres and the BIMDG, and keeping up to date with the latest Government guidance to keep patients well informed by providing the most up-to-date information specific to those living with IMDs.
  • Supporting patients and families individually to help alleviate anxiety.
  • Bringing patients and families together as a community to reduce isolation and encourage peer support.
  • Working with the patient community to empower them to take control of the situation and live within the social distancing/self-isolation/shielding guidance in a way that is practical for their family.
  • Providing patients and families with the opportunity to share their experience during the crisis via our online survey so that we can keep on top of the most pressing concerns and identify the best ways to advocate for patients.
  • Increasing our digital presence, delivering webinars and our online annual conference in collaboration with medical professionals and patient organisations, to reach as many patients as possible and address their common concerns.
  • Developing patient insight videos, providing a platform for patients to share their important but often unseen experiences of accessing routine healthcare, remote appointments, emergency care, clinical trials, managed access agreements and more.
  • Supporting the patient community through the long period of increased isolation via weekly virtual coffee mornings

As the situation evolves and we prepare for the new normal, we will adapt our support to meet the changing needs of our community, and develop new ways to keep patients and their families informed and involved.

We will continue to create new pathways to work with medical professionals and learn from the experiences of our patients and families to help the wider community and shape our work in the coming months.  We will advocate for equality for patients living with Inherited Metabolic Disorders in access to care, treatment and medicines.

However, the reality is that this pandemic is having a financial impact on us as a charity and as a result, the support, services and advocacy that we deliver is at risk.  We need your help more than ever, please support our vital work if you can.

Funding from the Coronavirus Community Support Fund, distributed by The National Lottery Community Fund, has helped us to continue our vital work supporting patients living with Inherited Metabolic Disorders and their families through this challenging time. Thanks to the Government for making this possible.