Meningitis Now

Welcome/welcome back to The James Tudor Foundation Blog. This month we have teamed up with Meningitis Now to shine a light on the long relationship we have had with Meningitis Now and highlight some of the fantastic work the Foundation has had the pleasure of funding.

Who are Meningitis Now?

When The Meningitis Trust (est. 1986) and Meningitis UK (est. 1982) merged in 2013, Meningitis Now was born. It is the first meningitis patient group in the world and a leading charity dedicated to fighting meningitis in the UK. Since its inception, large amounts of money have been invested in early-stage research, and vital awareness campaigns have been carried out across the UK to raise the profile of meningitis and work towards its eradication.

Meningitis still affects 22 people every day and the charity provide these people and their families with the care and support they need. Meningitis Now’s vision is a future where no-one in the UK loses their life to meningitis, and everyone affected gets the support they need to rebuild their lives.

What is the relationship between Meningitis Now and The James Tudor Foundation?

The James Tudor Foundation’s relationship with Meningitis Now started in 2005. Over the years the Foundation has funded various projects from medical research into potential vaccines, to more recently funding the salary of an Information and Assessment Nurse in the support services team.

Who is the Information and Assessment Nurse?

The lady who fulfils this special role is Caroline Lyons. Caroline has a wealth of nursing experience having spent nine years as a Paediatric Oncology Nurse Specialist followed by 12 years as a community nurse specializing in both children and adults. Caroline is certified as a registered nurse by the Nursing and Midwifery Council (NMC) and her expertise has been an invaluable addition to the support services team.  

What is her role?

Caroline provides support and information to people across the UK, by answering phone, email and online helpline enquiries. She goes above and beyond to make sure every service user feels reassured and informed after contacting the Helpline. Another aspect of her role is to assess the needs of individuals and families whose lives have been impacted by meningitis to ensure Meningitis Now can provide the best and most appropriate support possible. She also develops and writes new support and disease information for the public to help raise awareness of both the symptoms of meningitis and its aftereffects.

Caroline says:

"It is a privilege to be part of Meningitis Now’s frontline support services. The Helpline is often the first point of contact for someone who is worried about the disease or living with its aftereffects.

As a nurse with a longstanding clinical background I enjoy drawing on my skills to support individuals and families, as well as my fellow colleagues.

The James Tudor Foundation have given fantastic support to my role from the start. It is thanks to supporters like The James Tudor Foundation that our services are available for free, to provide an important lifeline for hundreds of families across the UK." 

What impact has this role had for the beneficiaries of Meningitis Now?

Caroline’s role has helped to maintain a 90% service level on the Meningitis Now helpline even throughout the pandemic, as a result of having her expertise there was a 39% increase in referrals to support services.

"I spoke to Caroline who was exceptionally helpful, supportive and understanding and gave me a lot of reassurance. Could not have asked for more. Excellent help. Thank you very much. This is an excellent service that you offer."

In 2021 Caroline oversaw the successful award of 44 Rebuilding Futures Fund applications totalling £17,350.

What does the CEO, Dr Tom Nutt think?

“The James Tudor Foundation has given tremendous support to Meningitis Now for over 15 years now and we’re really grateful for their ongoing support for our lifesaving and life-changing work, as we look to defeat meningitis within a generation.

We are now entering the third consecutive year where the Foundation has helped to fund our Information and Assessment Nurse – one of four qualified nurses within our support team. Our Information and Assessment Nurse has worked tirelessly throughout the pandemic, helping to ensure that our freephone meningitis Helpline remained operational and dealing with online enquiries. This service is an invaluable first point of contact for people seeking help and support as they face the impact of meningitis, and the knowledge, compassion and understanding within the team is such that last year 100% of callers told us they feel more confident in dealing with the issues raised after talking to us.

The Nurse is also a key part of our Rebuilding Futures Fund panel. The Rebuilding Futures Fund provides financial and practical support for people of all ages affected by meningitis.

At Meningitis Now we are unrivalled in the comprehensive way that we support people affected by meningitis in the UK and have been for 35 years now, thanks to supporters like The James Tudor Foundation. With their continued backing we are now working towards recognition as a Centre of Expertise for Meningitis Information and Aftercare within the next five years.”

What does the future hold for Meningitis Now?

In 2021, Meningitis Now launched a new five-year strategic plan. Making a difference everyday reinforces their commitment to saving lives, rebuilding futures and continuing to make a difference in the fight against meningitis. Its three key objectives are to:

·        Fight to defeat meningitis in the UK within a generation

·        Reach out to everyone who needs our help, support and information

·        Be recognized as a centre of expertise for aftercare and support.

The strategy shows Meningitis Now’s commitment to investing in lifesaving research, improving awareness of vaccines and influencing policymakers to improve early diagnosis and treatment of meningitis. It also looks at how they will improve meningitis awareness and focus on promoting our support services more widely, directly supporting those affected by meningitis.

The role of the Information and Assessment nurse will be central in the implementation of this plan in the coming years.

As a Foundation we value the relationships built with beneficiary organisations and hope we can continue to support future projects at Meningitis Now to help them in their fight to defeat this cruel disease in the UK.