Case study: “I’m searching for that ‘magic bullet’ of a cure”: Norfolk long COVID patient is supporting research in the East of England

Grant Long, a retired managing director of a motor group from Norfolk, is helping to improve research into long Covid.

After taking part in several studies and forming a support group for those living with long Covid, Grant recently became a Public Research Champion (PRC) at Norfolk Community Health and Care NHS Trust (NCH&C).

PRCs are passionate volunteers who work with the National Institute for Health and Care Research (NIHR) to help raise awareness of research and make it easier for people to take part in it.

Grant’s interest in health and care research began in March 2020. He contracted COVID-19 at the very start of the pandemic, when very little was known about the virus and its long-term effects.

Grant now suffers from long Covid, and experiences debilitating and ongoing symptoms including breathlessness, severe fatigue, ‘brain fog’ and memory loss, depression, and tinnitus (ringing in the ears).

Grant was referred to the physiotherapy service at NCH&C to find ways to help manage his symptoms through exercises. It was through this service that an opportunity arose for Grant to form a peer group to support those living with long Covid in Norfolk and Waveney.

In under a year since its formation, the group now has 234 members. Grant produces a quarterly newsletter, which provides information about the latest research on long Covid, and their monthly online meetings often include talks with NHS clinicians. Grant said:

“There is no cure for long Covid currently as it’s such a complex illness, so myself and other patients are searching for that ‘magic bullet’ of a cure.”

Grant has taken part in several long Covid studies, including numerous questionnaires and one looking at the development of an app, in a bid to understand more about his condition and to progress research in finding treatments.

He’s also involved in the LISTEN project, jointly funded by the NIHR and UK Research and Innovation, which works in partnership with individuals living with long COVID to design a package of self-management support personalised to their needs.

As a patient voice, Grant sits on the Patient, Carer and Research panel at NCH&C who meet quarterly to discuss the Trust’s care and services, and has also recently marked medical student papers as a layperson.

Grant is looking forward to contributing his voice as a PRC to help develop better care and treatments and to help spread the word about research. He said:

“I have a natural inquisitiveness for research, and I want to find out more about health conditions and to help other people.” 

“I’m looking forward to exploring this role as I’ve learnt so much from other groups I’ve sat on and the research studies I’ve taken part in.”

Anna Lartey, Research Manager for Community Services at NCH&C, said:

“We are very pleased that Grant has agreed to be our new Public Research Champion at NCH&C. He brings a wide range of skills that will help us promote the importance of research within our Trust.

“I am really looking forward to working closely with him on a range of projects, and luckily Grant is creative, so he has already agreed to help with our new newsletter and promotional material for our admission packs.”

For more information about the role of Public Research Champions visit www.nihr.ac.uk/patients-carers-and-the-public/i-want-to-help-with-research/research-champions.htm.