The Specialist Nurse

The Ann Conroy Trust began funding, several years ago, the post of a Syringomyelia specialist nurse, the first of its kind in the UK. The NHS has since taken over the financing of this position and we now have a full time specialist nurse in place. She offers a direct counselling service to victims of Syringomyelia and hindbrain hernia, as well as to their families and carers. She also provides direct support to those patients who are admitted to her hospital for surgery or other treatment. She fulfils an educational role, training non-specialist nurses who are called upon to look after Syringomyelia/Chiari Malformation patients in hospital.

Our nurse also provides vital links with other specialist services involved in the care of Syringomyelia victims. Important amongst these are spinal injury services, for victims of post traumatic Syringomyelia. Liaison with pain relief clinics is also a vital role, for the many Syringomyelia/Chiari Malformation patients who suffer from chronic pain and various other uncomfortable disturbances of body sensations.  Many hospitals now have a neuro nurse specialist covering the area of CSF disorders, if your neuro unit/ward has a specialist nurse you will be able to contact her/him with any queries you may have about your condition.

Not all units/wards have a specialist nurse.
The CSF disorder specialist nurse will increasingly fulfil the role of a research worker, studying in particular the nursing, social and domestic needs of patients and their families. This research will enable her to enhance her role as a patient counsellor and teacher.