The Lily Foundation logo featuring a butterfly, hearts and an 'x' for a kiss

Fighting mito,
finding hope.

Happy birthday NHS!

Support

3 July 2020

This month marks 72 years since the NHS was established. To mark the occasion, we're focusing on some of the ways The Lily Foundation works with the NHS to support people with mitochondrial diseases. It's a partnership we're immensely proud of, and one that brings real, lasting benefit to patients and their families.

A corner of a building with a sign saying NHS

As a nation, we've never needed the NHS more than we do now, or been so aware on a daily basis of the vital role its workers serve in protecting the health and wellbeing of millions. In recent months NHS workers have been literally putting their lives on the line to keep us safe. We've never been more proud and grateful for the work they do.

This month marks 72 years since the NHS was established. To mark the occasion, we're focusing on some of the ways The Lily Foundation works with the NHS to support people with mitochondrial diseases. It's a partnership we're immensely proud of, and one that brings real, lasting benefit to patients and their families. 

This view is shared by many of the leading healthcare professionals we work with. Dr Victoria Nesbitt, Consultant Paediatrician & Clinical Lead for the Highly Specialised Service for Rare Mitochondrial Disorders in Oxford, says: 

"We are delighted to work in close partnership with The Lily Foundation to support those affected by mitochondrial diseases. We are particularly grateful that they have funded a part-time research nurse for our service, and enabled us to provide our patients with mitochondrial disease alert cards and resource leaflets. They have supported us in study days for professionals and at our annual patient information events. We have worked together, along with our other two national centres in Newcastle and Queen’s Square, to provide information and support for patients, and their families, during the COVID-19 pandemic. As a team we are thrilled to support Lily Family Weekends and be part of their Medical Board. It is our pleasure to promote the fantastic work of The Lily Foundation and appreciate the support they give patients and families attending our service."

Here are some of amazing things we've achieved by working together with our NHS partners: 

Lily Exome Sequencing

Since its launch in 2014 this groundbreaking project has been a huge success, providing over 75% of those tested with a confirmed or highly probable genetic diagnosis. Knowing the genetic background of their disorder empowers people to make important life decisions, including family planning and participation in new drug trials. Lily's funding period for Exome Sequencing has now ended, but it is a measure of the project's success that the NHS now include  this type of genetic testing within its service provision.  Find out more

Mental Health Support

Thanks to our partnership with the NHS, young people affected by mito can now access specialist mental health support to help them cope with the psychological impact of their disorder.  The service if available to people with mito as well as family members and carers.  It's provided by The Lily Foundation and available to via a referral service at mito centres around the UK. Launched earlier this year, there are plans to expand this much-needed service once additional funding has been secured. Find out more

Patient Engagement Days

Our co-hosted Patient Engagement Days provide a unique forum where patients, carers and medical practitioners can come together and learn from one another in a safe, informal space.  Sharing information and experiences brings real benefits those living with mito, and helps doctors to better understand the many complex ways that mito can impact people's lives. Currently we are developing ways to hold online Patient Engagement Days and informal 'coffee mornings' using remote video conferencing, with encouraging results so far. 

Professional Education & Trainings

We provide funding for medical professionals to attend the top international conferences on mitochondrial disease, and also use our presence at these events to give patients a voice regarding the provision of clinical services, research priorities and new drug development. This would not be possible without a close working partnership with leading healthcare providers including the NHS. We also play an active role in linking GPs with the specialist support and information they need to treat patients who have a mitochondrial disorder.

Information & Resources

Our charity funds the provision of digital and printed resources, so patients and healthcare professionals can easily access the latest information about mitochondrial disorders. These resources include the NHS Rare Mitochondrial Disorders Service website (which is built, hosted and administrated by The Lily Foundation), brochures in GPs surgeries and clinics, and 'mito alert cards' with emergency contact details that mito patients can carry on their persons in case of being taken seriously ill. 

Covid-19 Crisis Support

Support enquiries to our charity increased nearly 10-fold in the first two months of the pandemic, and our close partnership with NHS services enabled us to respond quickly and in a coordinated way. We provided: 1-to-1 support to vulnerable patients and concerned family members via a 24-7 phone and email service; almost daily email health alerts with advice specific to mito patients; a list of useful contacts including community support, contingency care planning, benefits advice etc; online forums and virtual events for shielding families to help them cope with long periods of isolation. Our charity also acted as a UK coordination centre for all mito patients who had been omitted from the government's shielding register and were therefore not getting the urgent support they needed.  

We could not have delivered this level of support to families had we not been working hand in hand with the NHS. By working together in this way, pulling on each other's strengths and resources, we have been able to deliver an efficient, coordinated, trusteed response, tailored specifically to our mito community. 

Help make a difference - become a Regular Giver today!

Our amazing partnership with the NHS is only possible thanks to the generosity of our supporters. By giving just £10 a month, you can be a regular hero and help bring real, positive change to the lives of people affected by mito.

Donate today

Donate through JustGiving to help The Lily Foundation fight mitochondrial disease and find hope for patients and their families.