LUPUS UK’s Board of Trustees is composed of up to twelve members, appointed for terms of up to three years. They have responsibility for the legal and financial oversight of the charity, meeting regularly with the Chief Executive to review the finances, set strategic direction and make funding decisions.

If you have any comments or questions for the Board of Trustees, you can contact them using our online form HERE

KEVIN WESTON

TREASURER – APPOINTED UNTIL MAY 2025

I Joined LUPUS UK and the North Wales Group in 2001, when my eldest daughter was diagnosed with lupus.

I was elected as a Trustee of LUPUS UK from September 2014. It was a privilege to have been elected Chair in 2015 for two terms. Over the six years the Trustees worked together to prepare the charity for the next 25 years. I am pleased as Treasurer that I can continue to support the work of LUPUS UK.

JULIAN ZBAR

TRUSTEE – APPOINTED UNTIL MAY 2025

Hi, I’m Julian and I became a trustee of LUPUS UK to contribute to the growth of lupus education amongst the public and medical community. I want to help improve how people manage life with lupus and have as fulfilling personal and professional lives as possible.

I’ve had lupus for the majority of my life as I was diagnosed with SLE when I was 12. I’ve been through flares at various stages of my life and have been treated for lupus across several countries I have lived in (Argentina, Switzerland, Scotland and England). I’ve had many different treatments available to lupus patients and have also experienced a long period of remission, free from any symptoms.

I currently work as a Financial Analyst for an investment fund in London, where I regularly analyse long-term financial plans, corporate strategy and accounting information. This analytical professional background caters well to the role of trustee, ensuring LUPUS UK is well positioned to continue on its mission in perpetuity and helping the charity to maximise its impact.

RICKY CHOTAI

TRUSTEE – APPOINTED UNTIL MAY 2026

I’m Ricky. Lupus is nine times more common in women than it is in men and it is because of this overwhelming predominance in women that men tend to be rather forgotten about. At the age of 25, I was diagnosed with lupus. My mother also was diagnosed with lupus in her mid-twenties and LUPUS UK has supported my family since its inception. It is a real honour to volunteer for the Board of Trustees. From 2015 to 2021 I was a patient collaborator (one of 18) on the MASTERPLANS study.

During my career I have spent most of the time working at National Union of Students (NUS). I am based in Manchester and outside of work, you can find me visiting local eateries in Manchester, watching Netflix and spending time with my niece and nephews.

JACQUELINE COULTON

TRUSTEE – APPOINTED UNTIL MAY 2025

I was formally diagnosed with lupus in November 2020 having been symptomatic for quite some time previously. As a trustee, I want to support all people with lupus to seek and receive the best care on their individual journey and to feel safe when they respectfully challenge their treatment options. I would also like to support the organisation when speaking to our clinical community, to understand and interpret the complexities our clinicians face when dealing with such a myriad of symptoms and what they mean.

My day job is as a Chief Nurse working in a commissioning organisation, so it’s safe to say that I can navigate my way around our wonderful but very complex healthcare system. Despite this, I struggled to feel as though I could question the treatment plan offered. This has made me realise that we all need to be our own wellbeing advocates, but that is not an easy journey and we all need some support.

The Board meets at least four times a year, typically in February, May, September and November. These meetings last most of the day and are a mixture of face-to-face and virtual formats. Trustees are also expected to attend our National Council meetings in February and July.

The Board receives weekly reports from the Chief Executive, which they are expected to read, and there is regular communication by email.

The Board also has several Committees working on important topics (such as Welfare, Measuring Impact, Ambassadors and Equality, Diversity & Inclusion) that Trustees have the option to join and participate in.

You can read and download the Role Description for a LUPUS UK Trustee here:

* Incorporation

* Key Performance Indicators & Measuring Impact

* Patient Involvement & Engagement in Research

* Welfare

* Young People & Families

Firstly, I would say that having a basic understanding of how LUPUS UK works before becoming a Trustee is a good starting point. if you are a Member, you will receive our News & Views magazine or you may be a member of a Regional Group, attending support group meetings, these would be a good place to gain some knowledge.

I had come from a regional group background and attended a few National Council Meetings which really helped me. I had also been campaigning for better care in Wales for a few years. I knew about the LUPUS UK-funded Specialist Lupus Nurses and research grants, along with the online support forum HealthUnlocked. I had also used the website myself to learn about my lupus symptoms, from my diagnosis onwards.

I have loved being a Trustee and now Vice-Chair. After being diagnosed towards the end of 2013, I had never heard of lupus and it has been an emotional rollercoaster ride. It is extremely frightening to start with and you have so many unanswered questions, however now my disease is well-controlled and I am extremely fortunate to be living a better life than I expected in those early days.

My driving force is hoping to make this whole process better for those that follow. Raising awareness, educating and bringing down the diagnosis time for all. All of us are passionate about LUPUS UK.

We ask that potential Trustees familiarise themselves with our policies, in particular our Diversity, Equality and Inclusion Policy and our Code of Conduct. We are committed to ensuring diversity and representation throughout our charity, including at Board level. We also strongly believe that Trustees behaviour meets a high standard to ensure that we can work together for the best outcome possible for LUPUS UK.

There are generally four Trustee Board Meetings a year. They are around four hours long, with comfort breaks worked in. They tend to be held on Fridays or Saturdays, depending on availability of the majority. However, during the last two years we have had a couple of extra meetings, to discuss important issues that could not wait for a normal Board Meeting.

All meetings were virtual during the pandemic, however we are now moving forward and planning two face-to-face Board meetings a year and two virtual. That being said, those face-to-face meetings are to be hybrid for the time being. If we are attending a face-to-face meeting, that does involve travel for most and so you must take this into consideration when thinking about becoming a Trustee.

As well as the four Board meetings a year, we have two National Council meetings and we invite our Trustees to attend these. National Council has a larger attendance, with representation from our Regional Groups and Coffee & Chat Hosts. These were previously all face-to-face, but going forward, one will be virtual and one face-to-face each year. These meetings also help to understand how our network of volunteers work and the issues that people with lupus experience around the country.

The most time-consuming part of the role of a Trustee is preparing for our Board Meetings. Paul Howard, CEO, distributes a weekly State of Play Report for Trustees which gives us an overview of what is happening at National Office. This is normally one to two pages, giving an update on staffing issues or projects being worked on. There are sometimes other papers attached and an invitation to give feedback. This might represent thirty minutes to an hour each week to consider and respond to. These State of Play Reports really do help when it comes to reading for the Board Meetings, as they keep your finger on the pulse. It also reflects the importance of the role, as we are legally responsible for the Charity and therefore are expected to keep abreast of all issues.

Preparing for the bigger meetings is all about reading the paperwork beforehand. We do expect everyone to have read the necessary documentation and be ready to discuss the issues involved at the meeting. The CEO tries to give us as much time as possible to prepare and documents are shared about two weeks before the Board Meeting. As some of us have lupus ourselves and everyone has work/family commitments, it is then up to us to get that reading and preparation done before the Board Meeting. I personally try to read some a week or so before, but mainly I will leave it until one or two days before to go over the documents thoroughly. I get brain fog and retention of information can be an issue.

We also have Committees to lead on certain projects or aspects of our charity. These are optional; some Trustees are members of just one Committee and others join many. These Committees can meet anything between twice a year up to five or six times a year, depending on current projects or demand. These are all virtual and generally no more than an hour long. The Chair of the Committee then feeds back to the full Board at Board Meetings. This enables the Board to look at some issues in much more depth, with a Committee whose skill set is most suited to a particular project and prevents Board Meetings becoming any longer. Membership of some Committees may involve more travel.

Being a Trustee takes, on average, ten hours a month. Sometimes more and sometimes less.

Ultimately, a Board of Trustees is a team effort and we all have the best interests of those with lupus at our heart. We all either have lupus or have been impacted by lupus, with either a relative or friend suffering. We have an induction process for new Trustees as we believe that it is imperative to clarify our role and expectations before someone comes aboard. We expect you to participate fully, be motivated and we expect commitment. We are a very friendly and approachable group, and we hope this shows. If you are not successful in being offered a Trustee position, then we would ask you to consider what other ways you can contribute to strengthening our beloved charity. Can you volunteer at a local level, by running Coffee & Chat meetings? Can you spare an afternoon to attend the Lupus Clinic at your local hospital to disseminate our literature and information to patients who need it?

Trustees are appointed for terms of up to three years. We plan for succession and sometimes people leave before their three-year term has expired, so please get in touch if you would like to hear more.