British Syringomyelia Group

I have been asked to explain to our members the aim and function of this group. The Ann Conroy Trust is and will remain our parent organisation. It oversees all the activities and projects which the Charity undertakes. For most of you, the help lines and, increasingly, the Facebook site provide major sources of support. The main event, as such, for members, is the annual AGM/Late Summer Meeting, held in the late summer/early autumn.

We also established, some years ago now, a network of affiliated neurosurgeons. This group now covers, geographically, the whole of the British Isles. We do not, as yet, have representation in all of the neurosurgical units in the British Isles but this is something to which we do aspire and are beginning to address. The names and contact details of our neurosurgical affiliates appear in every newsletter and also on our website.

The charity does not in any way "screen" these affiliates because they are all fully qualified neurosurgeons, practicing in the UK. As such they have already been trained to a high level and have been subject to professional examinations of a very high standard. They have been accredited by the Royal Surgical Colleges and have their accreditation registered with the General Medical Council. For the charity, therefore, it is sufficient that each affiliate simply declares an interest in treating patients with Syringomyelia, Chiari Malformation and related disorders.

Whilst all affiliated neurosurgeons are invited to attend the meetings of the British Syringomyelia Group, not all choose to do so. They may simply be content for their names to be listed as neurosurgeons with an interest in Syringomyelia & Chiari malformations. This way the Charity and its affiliates provides a service for the convenience of patients. Those that are members of the British Syringomyelia Group do not attend every meeting but we nevertheless run very successful and productive meetings and have done so now on many occasions. We have also increased the frequency of these meetings to twice a year.

So, what, exactly, takes place at these meetings? Some of us meet up the night before and enjoy a meal and a drink together. This is part of the informal networking which enhances professional links and, from that, patient care will benefit. Others arrive the following day, the day of the meeting itself. We begin at 9am and, by then in a fairly formal setting in a meeting room, discuss individual cases. These are both illustrative cases for learning and also difficult cases, for wider specialist input into decision making. All patients are discussed anonymously and individual members will present the case history, describe any physical signs noted on examination and will show selected scan images. The presenter will usually have a question or two to put to the meeting. We may agree on the best form of management or we may have different opinions.

The important point, following from the discussion held, is that, for the individual who is the subject of discussion, he or she gains the benefit of a "super second opinion." Whichever member of the Group presented the case is then able to return to the patient under their care and say "I have discussed your case with a number of my colleagues, all of whom have great experience in treating the condition you have and these are the opinions expressed and following this my proposal is...". The proceedings of the Group are recorded, once again in an anonymous format.

I can illustrate this function of the British Syringomyelia Group with a case that we discussed at our meeting in November 2010. As I was about to leave Birmingham and travel over to Dunchurch for the meeting, one of our neurosurgical trainees came into my office and wanted to show me and discuss some MR images, relating to a patient who had been admitted as an emergency the previous night. That same patient had previously been treated by a neurosurgeon in another city and I knew that he would be attending the meeting of the British Syringomyelia Group the next day. I said, therefore, that I would take the images with me and could discuss them with him directly, at the meeting. The following day, I was duly sitting around the table, with my colleagues. I projected the images, from the CD-ROM, onto the screen so that everybody could view them. I summarised the recent history. My colleague, who had treated this patient previously, then gave us an account of what he had done for the patient before. Using the hotel's wireless internet service, and then, using his own security passwords, he logged on to the secure server in his own hospital. He was then able to show us the earlier MR images, so that we could compare them with the current pictures that I had brought with me. There was, then, unanimous agreement, amongst the group, as to how this patient should be treated. The following day, having returned to Birmingham, I was able to propose a management plan to this patient, for him to consider, based on this "super second opinion".

Those of us who are privileged to work in the modern day health service are used to having some pretty amazing technology at our disposal, particularly when it comes to imaging of the brain and image-guidance during neurosurgical operations. Even so, we all felt that it was rather impressive that a group of national experts, meeting in a hotel just south of Rugby, could discuss a patient in Birmingham, whilst at the same time viewing his previous images, located in another city.

Graham Flint FRCS

Over recent years this charity has made tremendous progress in achieving many of the aims that it originally set itself, over ten years ago now. Yet I still recall the sense of desperation, prevalent at that time, about "who is going to look after us" - this, of course, was shortly after the untimely death of Bernard Williams.

There also seemed to be a perception, amongst the body of Syringomyelia/Chiari Malformation patients as a whole, that Birmingham was the only place in the UK where Syringomyelia and Chiari Malformations could be treated. This was clearly not the case and for this reason the Ann Conroy Trust set out to identify those neurosurgeons in the UK who had an interest in treating Syringomyelia, Chiari Malformation and related conditions. As a result of our efforts, we now have 24 names on our list of affiliated neurosurgeons.

We were pleased, recently, to fill a gap in the West Country but we then had our first retirement and we now have a gap in the Sheffield area. This serves us to remind us that we need to encourage younger neurosurgeons to become affiliates of the Charity.

Up until recently I was in the habit of referring to ACT neurosurgical affiliates as a "network" of specialists. This may have caused some misunderstanding as to how this group functions. In particular, patients may ask why they cannot simply choose one of the specialists on our list, to whom they can be referred. We must remember, however, that this group of neurosurgical affiliates was not a creation of the Department of Health and is not an instrument of the NHS. It is a product of the Ann Conroy Trust and all our listed consultants have put their names forward voluntarily. The Charity does not screen or endorse these individuals but they all hold posts as consultant neurosurgeons in the British Isles and, as such, will be appropriately qualified and experienced, will have been subject to searching professional examinations and will remain subject to regular appraisal, re-validation and re-certification. What the Charity set out to achieve was a state where there would be at least one specialist, in each region of the UK, with a declared interest in the management of Syringomyelia, Chiari Malformation and related conditions. It is no longer necessary, therefore, for somebody to travel the length and breadth of the country to obtain an expert opinion about their condition.

Unfortunately, these specialists are not all available to each of you to consult. It was never the Charity's intention that this be the case. If you ask your GP to refer you to one of our listed specialists, outside your own region, it may not always be possible for you to see that individual. Consultants have to give priority to people in their own regions. By way of analogy, there are "international" airports all around the UK, from where we can take flights overseas but it is unlikely that all these airports would be able to take us to our chosen destination, on a particular day. On the other hand, most of us do have an international airport not too far from where we live.

Often Syringomyelia/Chiari Malformation patients are referred to a neurosurgeon who is not on our list. This does not mean that this surgeon is not capable of advising you. Indeed, there are several of my colleagues, around the UK, who we would like to have on our list but who have not yet joined us. When you are referred to a neurosurgeon you may not see that consultant, in person, at every appointment or at your first visit. If you do see a registrar he or she will then discuss your problems with the consultant, who remains responsible for the advice you are offered and the care you are given. Registrars are sometimes referred to as trainees. They are indeed specialists in training but they are also qualified doctors and many have a great deal of experience already, in their field.

As a charity we accept that access to Syringomyelia specialists is still not as free as we would like it to be. Ideally we would like to have an affiliated neurosurgeon in each neurosurgical unit in the UK but first we need to do a little more to raise the profile of our Charity, and the British Syringomyelia Group, amongst the body of British neurosurgeons as a whole. To this end, the British Syringomyelia Group has recently applied to become affiliated to the Society of British Neurological Surgeons. I have also raised the idea, with the SBNS, of charities such as ours becoming affiliated to the Society.

In the meantime we will see if the Charity could take on a role of enquiring of our neurosurgical affiliates, on behalf of individual patients, if they are in a position to accept out-of-region referrals. We will also discuss, at the next meeting of the British Syringomyelia Group, how we could make better use of our list of affiliated neurosurgeons, for the benefit of patients.

Our charity continues to develop and services for those living with Syringomyelia of Syringomyelia and Chairi Malformation (Hindbrain Hernia)are better than they  were five years ago and certainly better than they were immediately after the deaths of Bernard Williams and Ann Conroy. We still have work to do, if we are to develop the first-class services that we all wish to see and we value very much the support of our members helping us achieve this goal.