Graham Flint: What does it mean to be a trustee, and how did I get here?

My association with this Charity began some 25 years ago, when I inherited the syringomyelia service that had been set up, in Birmingham, by the late Bernard Williams. Ann Conroy had been one of Bernard’s patients but she, too, had died, a few years before him. I still recall my first encounter with members of what was then known as ANTS (Ann’s Neurological Trust Society). This was on a Saturday afternoon, in the main lecture theatre of the Midland Centre for Neurosurgery and Neurology – now, sadly, demolished to make way for a housing development. The room was full, occupied by people who were clearly distressed at having lost the services of an internationally renowned expert in the treatment of syringomyelia and hindbrain hernias – as Bernard preferred to refer to Chiari malformations. One gentleman stood up, clearly worried, and asked “who is going to look after us now”. I realised that, standing there on the platform, dressed as I was in collar, tie jacket and trousers, I was being seen as a representative of an official service, which had a duty to care for all those assembled. In truth, the Charity then, as now, had no direct connection with the NHS. All those who worked for it, including former friends of Ann Conroy, were giving of their time voluntarily. It was nevertheless quite apparent that, if I were to develop an interest and, hopefully, some degree of expertise in managing this uncommon and somewhat enigmatic condition, to which Bernard Williams had devoted so much of his professional life, then I would need to work with the ANTS team.

What followed were a number of years, during which I attended further Saturday afternoon meetings, encouraged to do so and chivvied along by Anne Lane, the then syringomyelia secretary. I listened to, what I referred to at the time, as “customer complaints”, noting some common themes. These included “why is it that nobody (i.e. no doctor) seems to know anything about these conditions” and “ where can we go to learn about them ourselves”, as well as “who can we turn to for help”. In discussion with the trustees at the time, I concluded that we needed: 1) to set up a website to provide a source of information, 2) to fund the appointment of a nurse specialist who could advise individual patients and 3) to set up a database of clinical cases, to facilitate subsequent research. These three objectives became “pillars” that would subsequently underpin the Charity’s objectives – support, education & research. I was indebted to several members of the Charity at the time, for their help and support in establishing these new foundations. I have, in particular, fond and grateful memories of the help and encouragement given to me by Janet Beasley, Elaina Morris, Jacqui Dutton, Lisa Meredith, Keith Jackson and others, together with the original ANTS trustees, including Margaret Rouse, Lysbeth Graham, John and Wendy Walker and Barry Coleman.

The first person to occupy the position of Syringomyelia Nurse was Alison Waldron. The charity funded her part-time post for a couple of years. In due course Alison moved on to another position, treating patients with other neurological conditions. By then the Charity’s funds had become depleted as it was also still paying for Anne Lane to continue in her role as syringomyelia secretary. I therefore approached the hospital management, pointing out how effective these two members of staff had been, in providing a service to people living with these uncommon neurological conditions. Happily, they accepted this fact and agreed to take over the funding of both posts, on a permanent basis. After an interval of a year or two, Karen Thacker took over from Alison Waldron. Eventually, Karen also became a trustee of the Charity. She was followed, as nurse specialist, by Kat Phillips (now Sethi) and then Hollie Murphy, who worked with me for over five years. By then it had become necessary for us to re-define the role of the post as being clinical nurse specialist (CNS) in CSF (cerebrospinal fluid). This broadening of the role ensured its continued funding by the hospital. The role was taken over, some two years ago, by Marian Byrne, who occupies the post at present.

After the hospital took over the funding of the secretary and the nurse specialist posts, the Charity was able to recover a little, financially. I nevertheless felt that we needed input from somebody with a business background and was therefore keen to accept the offer of support from Tony Kember and his wife, Sue. Tony duly took over as chairman, for the next ten years. During this time the Charity changed its name to the Ann Conroy Trust and embarked upon a series of highly successful ventures, from which many people still benefit. These included the establishment of the British Syringomyelia Group, the organisation of the international conference “Syringomyelia 2007” and the publication of the monograph “Syringomyelia, a disorder of CSF circulation”. Charity finances were also put on a sound footing and we remain, today, well placed to embark upon future projects.

Tony Kember handed over the reins to Lynn Burton, in 2013. From the outset Lynn devoted the greater part of her waking hours to the Charity, both directing various activities and providing support on a personal, one-to-one basis, for callers on the Charity helpline. Her untimely death was, in common with that of Bernard Williams, a blow to the cause.

So where does this leave me now? Along with my job as consultant neurosurgeon at the Queen Elizabeth hospital Birmingham, Tony Kember and Lynn Burton in turn have kept me busy over the past 25 years. At no time did I have ambitions to take over the running of the Charity myself and I was quite happy to be just a medical advisor in the early days. Tony Kember persuaded me to become a trustee and, as the years passed, I developed a sense of stewardship towards the Charity. Initially I tried to protect my family and friends from taking on Charity duties but, as many know, my wife Marian, as well as my daughter Alicia, have carried out increasing amounts of work for the Ann Conroy Trust, particularly over recent years. When we learnt of Lynn’s illness and her need to spend time in hospital undergoing chemotherapy, I felt that the only practical solution was for me to stand in, on her behalf, as acting chairman. After Lynn died, we held a trustees meeting, this time by Teams in view of the Covid pandemic. I had asked, beforehand, for nominations from my fellow trustees, as to who might take over the chair. So here I am.

I have been asked what it means to be a trustee or, as in my case now, a chairman of the Ann Conroy Trust. At a superficial level, it is about having something to keep my brain active, now that I am retired, having been “a student of medicine” for half a century. I can at least draw upon what I have learnt during this time and do not need to learn new skills – although perhaps I am being lazy in this regard. I cannot say that I will miss the agonies that sometimes go with being a neurosurgeon, emotions well highlighted by my colleagues Henry Marsh and Jay Jayamohan in their respective autobiographical accounts. Recent television documentaries, showing the day-to-day work in various UK hospitals, have also highlighted such issues. At a deeper level, my role now is, as it has been for so long, about trust, as the word “trustee” implies. I have always been keenly aware that patients have little choice but to put their trust in their doctors, particularly their surgeons. It has been a great honour and privilege to have been in receipt of such trust over the years. A charity trustee has financial duties of care, of course, but I also feel a duty towards those who have put in so much effort in the past, to bring this charity to where it is now. With our recent loss of two valuable trustees, in the year also lost to Covid-19, we have needed to slow down. We remain a small charity, funded, run and supported entirely by volunteers, who give of their time willingly, as their own lives permit. In this context, what the Ann Conroy Trust has achieved to date has been quite remarkable and I like to think that Ann Conroy would approve of what has been done. To some extent we have outgrown our roots and a degree of pruning has been needed in 2020 but I hope that this will permit new and healthy growth in the years to come.

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