The Association for Spina Bifida and Hydrocephalus has a team of experienced and qualified health advisers who provide valuable information, advice and support.
Spina bifida and hydrocephalus are relatively rare and complex conditions; no two people will be affected in quite the same way. Health advisers work closely with neurosurgeons and other healthcare professionals, and GPs often contact ASBAH when they meet a patient with spina bifida or hydrocephalus for the first time. It is uncommon for a GP to see more than one patient with either condition in their practice. ASBAH’s health advisers provide GPs with information that helps them to ensure the patient receives the best treatment.
Information sheets
ASBAH information leaflets, which are available to download for free are written by our health advisers or other specialists and are approved by our Medical Advisory Committee. These leaflets provide information and advice on a broad range of topics including: spina bifida; spina bifida occulta; hydrocephalus; NPH; intracranial hypertension, anencephaly, ventriculostomy, shunt malfunction and all aspects of continence. Our health advisers regularly assess and review the information to ensure it is up-to-date and accurate.
Medical enquiries
The ASBAH helpline handles thousands of enquiries, on a range of subjects, via telephone or email. Medical enquiries are passed to a health adviser.
Some service users simply want reassurance that their symptoms are ‘normal’, whereas others have highly complicated questions. People are often aware that many medical professionals have little experience dealing with spina bifida or hydrocephalus. As a result, ASBAH health advisers often receive calls from people who need help accessing consultants with a special interest in these conditions and the most suitable medical services.
Senior Health Adviser, Rosemary Batchelor, believes that service users find this particularly beneficial. She said: “We get a lot of positive feedback on the services we provide as health advisers, which is very rewarding. We dedicate a lot of time to understanding all we can about these conditions and how lives can be improved, which is something that busy GPs can’t always do.”
Clinics
ASBAH health advisers attend regular NHS clinics: these may be clinics dealing with hydrocephalus, urology, continence or rehabilitation issues.
For one full day, once a fortnight, a multi-disciplinary holistic clinic is held at London’s Chelsea and Westminster Hospital. Patients are expected to be seen once a year.
The clinic provides an opportunity for patients to access a number of different aspects of their daily lives in one session. This is extremely beneficial, especially for professional people, as it eliminates the need to attend different clinics for different specialist areas on different dates. Professionals such as occupational therapists, continence advisers and neuropsychologists, are on hand at the clinic to offer their expertise.
The clinic looks at every aspect of a patient’s life, not just the physical or outward symptoms, and addresses a number of issues that are often forgotten about including employment, benefits and education.
Health adviser, Gill Yaz says: “Although I attend the clinic as a health adviser, it is very important to look at issues affecting an individual from a non-medical point of view. Of course it is important to address medical concerns – continence care is always a very important topic that people want advice on. However, a person’s quality of life can’t be improved through the treatment of physical problems alone.”
