Trustees & Governance

The CSF Leak Association is a Scottish Charitable Incorporated Organisation. This means that we are both a registered charity and a body corporate (accountable to, and regulated by, the Office of the Scottish Charity Regulator). The Board of Trustees is responsible for general oversight and the strategic direction of the CSF Leak Association.

Under our current structure, Trustees also make all day-to-day decisions on the management of the charity and its work. Trustees are currently elected/re-elected each year from within the membership at our Annual General Meetings, although a Trustee may also be co-opted by the Board. All Trustees go through an application, election and induction process. To find out more about our AGMs click here.

Clare has worked as a clinical scientist in Medical Physics within the NHS for 16 years and is fascinated by how modern medicine has yet to understand so many aspects of how the human body works. She joined the charity in 2018 starting out supporting the work of the Medical Advisory Committee and later by stepping into the role of chair. She worked on developing the SIH guidelines and continues to work on raising awareness within the medical profession, raising the profile of the patient’s voice in research and designing and developing a CSF leak registry.

She had lived with a hypermobility syndrome and Postural Tachycardia Syndrome (PoTS) for many years before becoming a spontaneous leaker in October 2015. She underwent numerous blood patches and recently had a second spinal surgery to repair a ventral dural tear. Although improved she continues to suffer daily symptoms alongside frequent migraines however, she is grateful for the opportunity to advocate for those who so often feel isolated and voiceless because of the suffering that comes with having a CSF leak.

After helping out as a volunteer, Clare is delighted to have the opportunity to support and implement the aims of the Association working alongside her fellow trustees to deliver the mission, vision and objectives of the charity to improve diagnosis and treatment for everyone who has a CSF Leak. Prior to joining the team she worked as financial controller and company secretary for a successful tech start-up.

She hopes to bring the skills developed over 40 years in the workplace to her role as a Trustee. Her health deteriorated in 2015 and she continues to seek solutions to her symptoms. Although no longer able to be as active as she once was, she enjoys learning French and keeping as fit and healthy as possible.

Bern has recently joined the Association in 2022 as a Trustee. She lives in South Wales and works as a GP.

Bern sustained a sudden dural tear, occurring in the middle of a traumatic stressor she was facing at work. This led to bilateral sub dural haematomas while abroad at a conference.

On returning to the UK, she was alarmed at the lack of local joined up care available, so after locating a suitable expert via the CSF leak website, she paid for diagnostic tests which located the tear at T11. She was recommended spinal surgery which she is waiting for.

Bern would like to assist with a UK patient registry, vital for conducting research into rare conditions, and would particularly like to see an increase in research into the neuropsychiatric symptoms of CSF leaks, how it relates to neuro-inflammation, how it progresses over time, and what might slow or halt the progression other than reversing the ICH.

She would like to see CSF leaks gain in recognition as a significantly disabling condition for its sufferers, and this status to be reflected in patients being able to access support more easily from the state, as well as private insurance policies such as critical illness.

Khadija also joined the Association as a Trustee in 2022 and works as a hospital doctor.

Through Khadija's work, she has come across a handful of individuals who have been formally diagnosed with a CSF leak and is bitterly disappointed many individuals go undiagnosed and subsequently receive a delay in treatment. She came to the realisation CSF leaks are not as rare as one might think, and was for this reason she wanted to become involved with the association as a Trustee.

Khadija wants to assist with a UK Patient Registry, once underway, and would like to see the CSF Leak Association establish itself as a lead innovator in medical pathways, guidelines and research on CSF leaks.

With nearly two decades of experience in User Experience (UX), Anita is a dedicated professional passionate about designing intuitive and inclusive digital solutions. Her career spans leadership roles across diverse sectors, where she has managed complex, multi-market research projects and championed the value of UX within organizations.

Her expertise lies in combining strategic oversight with hands-on research, ensuring digital experiences meet user needs while aligning with business goals. She has worked across sectors, honing skills in UX research, stakeholder communication, and team leadership.

Her connection to the CSF Leak Association is deeply personal. Following the birth of her son several years ago, she suffered a cerebrospinal fluid (CSF) leak due to complications from an epidural. This frightening experience left her with a personal understanding of the challenges faced by others in similar situations. She is now eager to support the association’s mission helping to make it's resources accessible and impactful for those in need.

Jenny is a research scientist who conducted her doctoral research on human cell biology at the University of Bath. She has over 20 year's experience working for a global consumer goods company applying scientific research to product innovation. Through this role she has gained extensive expertise in scientific research, project management and working with industrial and academic partners. She has several publications and patents.

She has volunteered for the CSF leak association for several years, including working on the development of the SIH guidelines and representing the association at medical training events. She is passionate about raising the voice of patients and as a trustee is aiming to utilise her research skills and expertise to work on activities aimed at improving patient care. 

Jenny has experienced the disabling effects of spinal CSF leaks having first suffered a spontaneous CSF leak in 2012. She has experienced several leaks and continues to manage the aftereffects and uncertainty of living with this condition. She tries to keep as active as possible and enjoys art, cultural exhibitions, gentle gardening and is a member of a local choir.

Richard was appointed as a Trustee of the charity in February 2026. His appointment follows careful consideration of how his professional expertise and personal experience could best support the charity’s aims of improving awareness, understanding, and access to information relating to cerebrospinal fluid (CSF) leaks.

Richard has lived experience of CSF leak conditions, having faced significant diagnostic and clinical challenges over an extended period. His journey started with first CSF Leak around 2005, his symptoms were not formally diagnosed for two years, and the potential seriousness of the condition was not initially recognised. A subsequent referral from an ENT department at a local hospital in Kent led to specialist assessment at a leading London hospital, where a CSF leak was confirmed.

Richard underwent surgical repair of the CSF leak, which was successful. Following this, he participated in the television programme City Hospital (2007), in hope of being able to promote the cranial CSF Leak condition to others. During which the clinical risks associated with untreated CSF leaks, including the potential for life‑threatening meningitis, were highlighted by his treating surgeon.

So far, Richard has had a couple of Cranial CSF leaks, contracted Meningitis twice. Had a head shunt operation, along with having the head shunt replaced. While ongoing monitoring remains necessary, Richard is now able to manage his condition and continue with daily life.

Following his personal health journey, he wanted to give something back. Richard sought to build a substantial professional career within the NHS. In 2015, he was appointed to an IT Systems Manager role at a local NHS hospital. In 2021, he joined NHS England as a Senior Systems Programme Manager, where he has contributed to the delivery of a national IT procurement system across more than 200 NHS organisations.

As a Trustee, Richard brings a combination of senior management experience, system delivery expertise, and informed patient perspective. He is committed to supporting the charity in promoting greater awareness of CSF leak conditions among patients and healthcare professionals, strengthening access to reliable information, and ensuring that individuals affected by these conditions are supported to navigate appropriate care pathways.

Our patient representative is not a member of the Board of Trustees and does not have a formal decision-making role within the charity. Their remit is to represent our membership and patients more generally within the organisation and, in particular, on the Medical Advisory Committee.

Patient Representatives are appointed for a set term and anyone within the membership of the CSF Leak Association may apply for the position, after which their application will be considered by the Board who make appointments. The patient representative will normally be a current or former CSF leak sufferer.