Trustees of LUPUS UK
Trustees of LUPUS UKLUPUS 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
Hi! I’m Elaine Holland. I was diagnosed with lupus in 1998, when I was 24 years old. Over the years, I have had several major flares that have required aggressive treatments. Despite being diagnosed with lupus while I was training, I was able to fulfil my dream of being a teacher for five years and I have also worked in IT within the NHS. The information and support from LUPUS UK has been invaluable to myself, family and friends over the years and I am glad that I am able to give something back by volunteering for the charity. I live with my husband, Scott, who I married in 2007 and we have a crazy Patterdale Terrier called Prince, who we adopted.
I am currently Vice Chair, Trustee and Regional Group Coordinator for Pembrokeshire & Carmarthenshire. I was diagnosed with lupus in October 2013 and so have been living with lupus for 9 years. I live in Pembrokeshire with my husband Ben and three teenage children. I feel very strongly that all lupus patients should be able to access expert, multidisciplinary care.
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.
I have been a Trustee of LUPUS UK for several years and I'm very interested in improving support for children, young people and families who live with the lupus.
I'm also Chair of the young person led charity, RAiISE which supports children and young people living with an invisible illness in school.
My daughter Sophie was diagnosed with lupus at the age of 14.
I work at NIHR NHS Trust Alder Hey Children’s Hospital in Liverpool where I am the Young People and Family research Co-ordinator for the Clinical Research Facility and the Experimental Arthritis Treatment Centre for Children. My role is to involve parents and young people in the design and dissemination of research and healthcare. I am also one of the founders of World Young Rheumatic Disease Day (WORD Day) , which spreads global awareness that children and young people are diagnosed with rheumatic diseases such as lupus.
Hi! I am Shaista and am humbled to have been appointed as a LUPUS UK Trustee. I have a great passion to serve humanity and make a difference in the lives of others. I am excited to get involved in raising awareness of the challenges faced by those with lupus especially individuals from ethnic minorities and supporting the charity to reach new heights.
Working within the healthcare sector, I have also been involved in delivering several projects to improve healthcare for patients and their families. I am currently working as an NHS Manager to provide workforce expertise and support the diagnostic workstream in delivering our national elective targets.
Outside of work, I love travelling and exploring different cultures and am still working on my desire to travel the world. I also have a sweet tooth so naturally love baking. Aside from this I love exploring nature, walking, and trying my hand at photography.
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.
Hi everyone, my name is Sue Grewcock. My daughter Megan was diagnosed with lupus in 2016 at the age of 20. She has been fortunate in finding a treatment that suits her, allowing her to graduate from university and work as a Merchandiser. I am a very proud Mum and live with my husband, Mark. I currently work as an International Trade Training Manager supporting companies that import and export goods. I changed my career 6 years ago as I wanted to help people, have a better work life balance and spend more time with my family. The role of trustee means I can continue to help people as well as raise awareness of lupus.
Hi, I'm Jolene Cheung and I have over 10 years experience in finance, project management and strategy. In addition to my corporate experience, I also have over 10 years of lived experience with lupus, where LUPUS UK has been a cornerstone for information and support during the entire journey. With my background, I hope to bring my experience, knowledge and respect for the charity to help the team at LUPUS UK to continue to inform the public and enhance the lives of those with lupus. Outside of work, I enjoy pottery (I am enthusiastic rather than competent) and hanging out with my miniature schnauzer, Gilbert (who is similarly enthusiastic rather than competent at times).
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.
Colin Da Silva
I was diagnosed with lupus in 1992 at the age of 27 and had never heard of the condition before then. My mother was diagnosed 10 years later, in her fifties and sadly passed away in 2015 from complications of the condition. I have recently finished a 39-year career in the RAF and am delighted now to have been selected as a trustee of LUPUS UK. I look forward to working with everyone and using the experience I gained as a member of the RAF Board to help LUPUS UK raise awareness of the condition and support the lives of those living with it.
Hi, I’m Matt Stinchcombe. I was diagnosed with lupus 18 years ago when I was 29. It was a scary time for myself and my family and something that is still fresh in our minds. It was also a massive learning curve as there was very limited information available on lupus and especially with men.
I live with my wife, Vanessa and have been married for 12 years. We also have a lovely Cavapoo who rules the house. I work for an Asset Management company as a Sales Director and have been working in London since my early twenties. I hope that the skills that I’ve learnt in my career can help build on the great work that LUPUS UK already does.
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.
What is a Trustee?Charity Trustees are the people who share ultimate responsibility for governing a charity and directing how it is managed and run. Trusteeship is an unpaid, voluntary role.
Trustees use their skills and experience to support their charities, helping them achieve their aims.
According to the Charity Commission, the six main duties of a Trustee are:
1. Ensure your charity is carrying out its purposes for the public benefit.
2. Comply with your charity’s governing document and the law.
3. Act in your charity’s best interests.
4. Manage your charity’s resources responsibly.
5. Act with reasonable care and skill.
6. Ensure your charity is accountable.
You can read about what each of these duties means in more detail on the Charity Commission website.
What is involved in being a Trustee of LUPUS UK?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:
READ/DOWNLOAD TRUSTEE ROLE DESCRIPTION
How can I apply to be a Trustee?If you would like to apply to become a Trustee of LUPUS UK this spring, please send a personal statement by email to [email protected] or by post to National Office. Within your statement, you should provide details of any skills or qualifications you have that could be beneficial for the charity, along with any relevant personal and/or professional experience.
Applications for spring 2023 must be received by 5pm on Friday 14th April.
When we receive your application, the Chief Executive and Chair and/or Vice-Chair will arrange a chat with you to provide and overview of the role and answer any questions. You will then be given the opportunity to confirm your candidacy.
The candidates will be reviewed by the Board of Trustees when they meet in mid-May. At this meeting, they will decide who to appoint. Trustees are appointed for terms of up to three years.
Current LUPUS UK Trustee Committees
* Centres of Excellence
* Devolved Nations
* Equity, Diversity & Inclusion
* Finance & Resources
* Key Performance Indicators & Measuring Impact
* Patient Involvement & Engagement in Research
* Young People & Families
Words from some past and present Trustees
Becoming a Trustee by Wendy DimentFirstly, 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.
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.