LUPUS UK’s Board of Trustees has recently had some significant turn-over with some trustees reaching the end of their terms and others resigning for personal reasons. Fortunately, we have had an influx of excellent candidates who are keen to volunteer on the Board and help steer the charity along the next exciting part of its journey.

We are very pleased to introduce six new trustees who have joined LUPUS UK’s Board in spring 2022:

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Jacqueline Coulton (North West)
Elected Trustee – Term to end May 2025

I was diagnosed with lupus in November 2020 having been symptomatic for quite some time. I commenced a treatment plan and started to feel well by July of 2021, at which point via a telephone appointment, my treatment was reduced due to an inaccurate weight reading. After a full-on decline in my health, I spoke to one of the lovely rheumatology nurses and my treatment was re-adjusted. However, as all lupus patients know, this then takes 3-6 months to take effect and even then, if it isn’t the correct dose then it will not prevent symptoms from dominating our lives.

As a trustee I would like to support all people with lupus to seek and receive the best care on their very individual lupus journey and to feel safe when they respectfully challenge their treatment options. I want fellow patients to understand who they need to talk to when it’s getting tough because the internet doesn’t provide that individual level of care and support that we all need. 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 to understand which research may offer the most benefit to our community.

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. So why then did I struggle to feel as though I could and should 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. It is always such a relief when we speak to someone who has the same annoying and irritating condition as we do; fellow sufferers offer such a warm welcome!

My professional journey has allowed me to gain experience in many different areas of healthcare; I am a qualified nurse, a midwife (not practising), a health visitor and I moved into a commissioning role just under 10 years ago. I completed a Master’s degree in Leadership and Management in Healthcare at Salford University and am lucky to return there on occasions as an Honorary Lecturer. In my current role I am a member of our Governing Body and lead strategically on all aspects of safeguarding. I work with many different stakeholder organisations both from the health and social care sectors and our third sector providers.

I am an enthusiastic, warm and committed person with strong people skills and a proven track record of effective leadership. I look forward to supporting LUPUS UK using these skills as the organisation continues its journey. LUPUS UK already has a strong, credible voice and I would like to offer my support and clinical experience to my role as a trustee to facilitate that ongoing journey.

I live with my husband, Stephen, and our Border Terrier. I have three grown up children who are all pursuing their own lives and dreams; they are my greatest supporters and just so much fun! My hobbies include gardening, (with full sun protection of course!), walking, travelling, and cooking, amongst many others.

 

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Ricky Chotai (North West)
Appointed Trustee – Term to end May 2023

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. Luckily the team at Lancaster Royal Infirmary did not let that statistic get in the way of my diagnosis.

My name is Ricky Chotai. When I was 25, I was diagnosed SLE and Hughes syndrome. There is a family history of the disease, as my mother also suffered from SLE. LUPUS UK was the first place I turned to help me adjust to living with lupus. Meeting people who either have lupus or cared for people with the condition helped me so much. The support I received from my regional group was so beneficial and I am so grateful to be able to access this support. When you are diagnosed it can be extremely lonely and being able to access LUPUS UK can be lifesaving.

From 2015 to 2021 I was a patient collaborator (one of 18) on the MASTERPLANS study. This was a project that received £4.6m funded by the Medical Research Council and LUPUS UK. This was the largest UK lupus research study to date.

During my career I have spent the majority of time working at National Union of Students (NUS). My role is responsible for engaging members in NUS and supporting the governance and democracy of the organisation. I have a passion for supporting student unions in developing key areas of their governance, digital campaigning, and democracy. This is particularly with an equality, diversity and inclusion (EDI) lens to ensure that marginalised voices are represented.

Outside of work, you can find me watching Netflix, or at a local vegetarian friendly restaurant and spending time with my niece and nephews. I am an adopted Mancunian having lived in Greater Manchester for the last 14 years.

LUPUS UK is at an exciting time with a new Chair and new CEO, and I am really excited to be a trustee and part of the future strategy and direction of the organisation. I am passionate about digital engagement and campaigning, in particular with an EDI lens. As we emerge from a COVID-19 world there is a real opportunity to try new things to expand the reach of LUPUS UK.  I am passionate about the work LUPUS UK does for its members in its variety of forms and I would like to play a small part in helping the organisation grow and develop doing the vital lifesaving work the charity does.

 

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Sue Grewcock (East Midlands)
Elected Trustee – Term to end May 2024

I would like to introduce myself; I am 56 this year and I spent 30 years, up to 2017, in various roles including Project Management and Consultancy services in the IT industry. In 2017 I decided to spend more time with my daughter Megan, helping her through the final months of her degree, so I took some time out from working. 

When Megan completed her degree, I started to look for a role where I could make a difference and be ‘useful’, and I found the perfect job. My role is rewarding; focussing on training adults in procedures relating to importing and exporting goods, and I feel I make a difference. During the last four years I have taken two International Trade qualifications studying with the Institute of Export and graduated in 2019 and 2021.

In relation to my link to lupus, it is my daughter Megan who was diagnosed with SLE in 2016 whilst studying for her degree. Her diagnosis took time; she had a low white blood cell count and joint pains, and it was only when seeing a locum that the ANA test was requested. This came back positive, and Megan was referred to the rheumatology department at the Nottingham Queens Medical Centre (QMC).

The lupus journey can only be described as heart-breaking and difficult, not only for Megan but the rest of the family. The team at the QMC quickly diagnosed lupus and talked us through the condition and how it could be managed. I had never heard of lupus so I started my research and got a feel for what could happen to her – very scary times. 

Various drugs were tried to manage the lupus, including hydroxychloroquine and methotrexate; both were not suitable. In July 2017 Megan graduated from university with a 1^st and we were so proud of her achievement, but her graduation was overshadowed by her illness; she did not enjoy the day at all. In August her hair started to fall out and it became difficult for us as parents to understand how to deal with this. Later in 2017 we found a company in Birmingham that specialised in hair loss and Megan now has a hair system – this we now think of as normal, but it was not then – how does a 21-year-old deal with hair loss?

Then some great news for Megan, she started working full-time at Sainsbury’s Head Office and Dr Peter Lanyon put her forward for the belimumab trial. From October 2017 to this day that monthly infusion has been her saviour. It is controlling Megan’s lupus and it is at a normal level allowing her to work full-time as a Merchandiser at a company based in Tugby. Her tiredness never goes away and the drug, we believe, has affected her in other ways such as having a sensitive stomach and weight gain, yet again we deal with this as a family. 

The last five-and-a-half years have been tough and as a parent of a ‘child’ that has lupus I have learnt a lot about myself and have had to work out how to support my daughter. I believe that what I have learnt may help other parents and I am keen to make sure that this ‘invisible’ disease is understood, there is a greater awareness and a faster diagnosis. Also, the skills I have acquired over my working life I am sure can be used in a Trustee’s role.

 

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Lucy Manning (Thames Valley)
Appointed Trustee – Term to end May 2023

I was diagnosed with lupus 14 years ago when I was 17, just about to sit my A-levels and excited to go to university. My diagnosis, flares and treatment changes have been challenging, both physically and emotionally, and have had a significant impact on my university life, subsequent employment, and my relationships with family and friends. Over time I think that learning to manage the ups and downs of lupus has made me a stronger and more motivated person, and I’m really keen to do what I can to help other people with lupus to live fulfilling lives and feel part of a supportive community.

Throughout my lupus experience, LUPUS UK resources have been invaluable to me and my family. Knowing that there are people working hard to help improve diagnosis and treatments, and that there are people at the end of the phone willing to share their experience and support, is an amazing comfort. It’s a privilege to be able to contribute my skills and time to such an excellent cause.

As I’m immunosuppressed, I’ve spent a lot of time ‘shielding’ in the last couple of years and I would particularly like to be an advocate for those who are most vulnerable to COVID-19 and are still navigating additional risks. Raising awareness of lupus and ensuring a bright future for LUPUS UK is so important as the UK and the rest of the world rebuild after the disruption caused by COVID-19, to ensure that people with lupus are able to live full lives safely.

I work as a regulation manager for a large energy infrastructure company. In that role I’m responsible for ensuring compliance with relevant regulations and maintaining good governance. I manage a large budget; keep track of liabilities, risks and mitigations; ensure policies and procedures are fit for purpose; check that the company’s actions are aligned with its goals; and plan in case things go wrong. I also have an eye on future energy policy and potential regulation changes, to help the company prepare for the long term and support a cleaner and greener world. I think that my skills and experience will be very relevant and useful in the role of Trustee for LUPUS UK, where I can help ensure that the charity is fulfilling its purpose and making appropriate decisions.

I’ve just written my PhD thesis (in philosophy), and with that chapter of my life coming to a close I’m excited to direct my time and energy into helping LUPUS UK as best I can.

 

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Kimberley Sharrier (North London)
Associate Trustee – Term to end May 2023

I’m a lupus warrior who is also a mother to an amazing little lupus warrior. Between my daughter and I, lupus has been a major part of my life for a combined duration of 25 years.  This unfortunate reality has placed me in a unique position of being on both sides of the ‘lupus coin’, viewing the extreme effects of it from both an internal, and external perspective.

I was diagnosed with lupus over eighteen years ago at the age of fifteen. I remember while waiting in the Louise Coote Lupus unit at St Thomas (which is now based in Guys) being attracted to a purple butterfly decorated corkboard filled with all the amazing accomplishments from LUPUS UK. This was my introduction to the incredible work that the charity was a part of, from fundraising to the multiple support groups it provided. It was the information provided by LUPUS UK online which helped me both understand and become comfortable with my diagnosis and how to explain it to others.

I have both witnessed and had experience of how aggressive and scary this illness can be. Although being diagnosed almost two decades ago, I have found that the reaction of those unaware of what lupus is has not drastically changed. This is a driving tool for both my daughter and I to help create awareness of the illness to make living with lupus easier for future sufferers.

Having gone through so much with my own diagnosis from a teen, it had prepared me for my daughter having been diagnosed at the age of six. Being a mother and daughter dealing with lupus together, I have learnt, is a rare occurrence. It’s this which is a contributing factor to me being so incredibly privileged and honoured to be a part of the LUPUS UK Board of Trustees.

I hope my extensive experience of dealing with this illness as both a patient and a mother of a patient, can help me contribute towards the fantastic work LUPUS UK provides in any way I can to help aid others deal with this illness.

 

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Julian Zbar (East London)
Elected Trustee – Term to end May 2025

My motivation to act as a Trustee at LUPUS UK stems from wanting to contribute to the growth of lupus education amongst the public and the medical community and to help improve how people manage life with lupus and have as fulfilling personal and professional lives as possible.  I want to help expand the influence of the charity to reach as broad and diverse of an audience as possible. I feel confident that the best way for me to contribute to these objectives, given my professional and personal experiences, is through the position of a Trustee at LUPUS UK.  

I was diagnosed with lupus when I was 12 and have been through flares at various stages of my life (childhood and now c.10 years into my professional career). I have been treated for lupus across various countries I have lived in and with a wide array of the different drugs available to lupus patients – yet still have a couple to tick off my list…I have also lived through a long period of remission, free from any symptoms whatsoever. All this considered, I think I have a fresh, wide-ranging, and still expanding perspective on what it means to have lupus which I hope to channel for good through a Trustee position at LUPUS UK.

I currently work as an analyst for an investment fund in London, which involves financial modelling as well as assessing corporate strategy and accounting information. I think that this professional background will cater well to the role of a Trustee, working to ensure LUPUS UK is well positioned to continue on its mission in perpetuity and helping the charity to maximise its impact.

I look forward to contributing my perspective to the charity, to help expand its reach to as broad and diverse an audience as possible and to ensure the continuation of the many years of amazing work that LUPUS UK has put into improving the lives of those affected by the disease.

 

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We are excited to work with all the new trustees and hope that you can join us in congratulating them and wishing them good luck!