One year on: our lay representatives
Meet our lay representatives - Fredelinda Telfer (known as Freddie) and Mohammad Jasim.
Freddie and Mohammad were appointed a year ago to promote the interests of NHS patients throughout the research process, provide patient perspective in our strategic development, and ensure transparency, accountability and probity in the processes and functioning of an organisation that is funded with public money.
They do this by attending bi-monthly meetings of the CRN NT Research Delivery Leadership Group, providing an independent patient/carer/public/service user perspective to the group, and promoting issues or questions which members believe would be important to patients and/or members of the public, among other things.
Find out more about them below…
Tell us about your background
Freddie: I trained as a stage manager at the London Academy of Music and Dramatic Art (LAMDA), and I initially worked in the theatre. But then I changed - lots of friends I had were becoming lawyers, so I decided to retrain.
A degree later, then law school, I qualified as a lawyer, and worked for just over 20 years for a professional regulator.
Mohammad: I am originally from Bangladesh, but I have been in the UK for more than 50 years. I worked the majority of my career for the Commonwealth Secretariat at its headquarters in London, responsible for public sector capacity development of more than 50 Commonwealth countries across all the continents of the world. Principally, I worked in combating anti-corruption, advancing good governance, public sector reform, helping nations build parliamentary democratic capacity, institutional development and poverty alleviation, among other things. In one of the programmes I was involved with, I worked with Grameen Bank to develop micro-credit lending - essentially small loans - for Indian women in more than 18 states in the country. This involved more than a million women borrowers and had the backing of the Reserve Bank of India.
Before working for the Commonwealth, I worked for the Pakistan High Commission and the Bangladesh High Commission, so my career was very much about government and international development.
Where does your interest in health, and in particular health research, come from?
Freddie: I am lucky enough to be part of a society which has a really good healthcare system. I know people who have benefited from really innovative healthcare. During the COVID-19 lockdown, I got very interested in news about the latest breakthroughs in the fight against the virus.
I am also involved in community tutoring medical students, who do a module as part of their first year called Medicine in Society. We immerse them in community settings, something that was not without challenges when we were running the courses remotely. I'm based at my own GP surgery, and it's fascinating to experience the hard work that the partners and staff do behind the scenes there; you really never see this nor think about it as a patient. Well, I didn't.
My dad had Parkinson's disease and he was involved in a clinical trial in Glasgow, so I have seen first hand the benefits of them. Everyone wills it to succeed - families as well! So my interest in health research runs quite deep.
Mohammad: I have had numerous health issues - cancer, heart issues and diabetes - and have been looked after very well by the NHS. When my mother came to the UK in the 80s - I was already here by that point - she could not speak English.
Our GP was of great help to us in helping my mum to assimilate into society, but also later, when she was diagnosed with Alzheimer's. She died in 1997. So when the opportunity came up with the NIHR, I wanted to contribute to societal development, especially the minority ethnic community, by leaving my footprints behind.
Research is in my DNA - I funded research when I worked for the Commonwealth. I like to tinker around the edges of research to find out how we can use best practice in making a positive impact to society- I am very inquisitive, persuasive and think outside the box!
Where did you see the post advertised?
Freddie: I saw it advertised online.
Mohammad: Online.
What did you know about the NIHR before you joined as a lay representative?
Freddie: Absolutely nothing!
Mohammad: Although I was previously aware about the excellent work that NIHR was engaged in from my peer group, I wasn't directly involved. However, I was passionate, given my global experience, about contributing from a minority ethnic perspective.
This is as someone who not only had been a long term recipient (as a NHS patient) of excellent care, but who was also keen to factor the 'voice of the voiceless' into research, to ensure the trickling down of benefits to all members of UK society, whatever race, creed and ethnicity.
What attracted you to the role?
Freddie: It sounded interesting. I was keen to read up and learn more about it. I have been involved in research, with the UK Biobank, for about 18 years, so I was not naive to it.
Mohammad: When I worked for the Commonwealth in shaping and formatting public policies, I was very much involved in capacity development in the health sector by emulating key successes from Commonwealth good practice in my career. For example, the Aids epidemic in Africa, Asia and small states and the advent of SARS in South Asia. These are all examples of the Commonwealth helping these countries build up their ability to cope with these health crises.
I felt I could bring to CRN North Thames the practical problem-solving experience gained in tackling such issues.
I strongly believe in feedback - performance measurement is key to improving. Sitting on these meetings, making constructive interventions, supports that overall goal.
Did you feel supported through your induction?
Freddie: Yes. Christine Menzies [CRN North Thames Patient and Public Involvement and Engagement Manager] was really supportive and pivotal in terms of organising the induction. We were also assigned mentors from NHS trusts, and mine was Kathryn Simpson, Research Portfolio Manager at Whittington Health NHS Trust, who was great.
Mohammad: Yes. Christine Menzies was great. In addition, I would like to thank Dr Sharon Barrett, CRN North Thames Chief Operating Officer, and her deputy, Adeeba Asghar, for their support, as well as that of my peer group and mentors. The FutureLearn course 'What Is Health Research?' was also really useful.
What have the meetings been like?
Freddie: They have not felt particularly hierarchical, which is good. It has been very technical and there is quite a lot of jargon, but I am not scared of it. The meetings are really good; people are very generous with their knowledge and it is good-natured. Again, I can see the amount of work that committed members put into the research programmes at their trusts, the sort of work that is very much in the background but that leads to research success.
Mohammad: It is really diverse and interesting, looking at both the qualitative and quantitative aspects in the application of research for the benefit of the wider community. It really brings home to me that working in a united participative way, we can solve many issues if we put our minds to it. I am very mindful of this in particular - the need to find solutions to resolve things.
The meetings have all been virtual up to now. Are you looking forward to when they revert to face-to-face?
Freddie: Yes. Although virtual meetings are very democratic, it will be good to meet everyone on September 19, which is scheduled to be the first first face-to-face meeting since the COVID-19 pandemic.
Mohammad: Yes. I think face-to-face meetings can be electrifying and positive. I am not sure virtual meetings give you that same energy. I appreciate that during COVID-19, the choices were limited and it certainly has helped keep the momentum alive and kicking.
