A person with spina bifida may be referred to a wide variety of professionals throughout their life, each with specific responsibilities and a unique role to play in supporting your health and wellbeing.
It can be hard to keep track of who's who, and who to talk to about what, which is why we've compiled a useful guide below of who these professionals could be, and what you might be referred to them for.
Neurosurgeons are specialists in surgery to the brain and spinal cord. Procedures for spina bifida include- closure of the spina bifida lesion, detethering spinal cords/removal of lipomas, inserting shunts, performing ETV, decompression of Chiari II, and investigations for NPH.
Referral to a neurosurgeon might be appropriate if:
Neurosurgeons may not be the appropriate clinician to see for chronic head pain if your shunt is working well, or for general developmental issues in children. Hydrocephalus or neuroscience nurses may be involved in resetting programmable shunts.
Neurologists are doctors specialising in disorders of the nervous system that don’t need surgery. It can be particularly helpful to see one for pain management or migraine/chronic head pain management. They can also be helpful when there are other conditions present at the same time (comorbidities) involving the nervous system. For example, people with NPH may also have Parkinson’s Disease, vascular dementia or Alzheimer’s.
Paediatric Neurologists may be involved in the care of children with spina bifida once surgery has been completed.
Urologists are surgeons who specialise in surgery and other treatments to the bladder. As people with spina bifida often have neuropathic bladder issues, they need lifelong involvement from urologists, to ensure their bladder is able to fill with urine, store it at low pressure, and empty completely, or that alternatives can be found. Procedures include, bladder augmentation/cystoplasty, Mitrofanoff, artificial sphincter, urinary diversion (stoma or pouches) and bladder neck tightening.
If you’re experiencing recurrent UTIs, leakage, frequency or urgency of urine, referral to a urologist may help. If you notice blood in your urine, pain/discomfort or new difficulties passing your catheter, this should be investigated urgently.
Nephrologists are doctors specialising in disorders of the kidneys. Annual blood tests via your GP should be able to monitor your kidney function, but if it begins to deteriorate, referral to a nephrologist may be helpful.
Orthopaedic Surgeons are doctors specialising in surgery to bones and muscles. They often work to correct changes to the shape or function of bones and joints, to improve stable movement and reduce pain. They work closely with physiotherapists and orthotists (below) to maximise mobility and prevent complications.
An orthotist is a healthcare professional who makes and fits braces and splints (orthoses) for people who need support for body parts affected by disorders of the nerves, muscles, or bones. They may also make or adapt footwear to provide extra support or accommodate orthopaedic issues.
Physiotherapists are health professionals who work to support movement and function for people affected by health conditions. They use a variety of techniques, such as massage, or teach movement or exercises to promote strength or range of movement.
Referral to physiotherapists can be useful to help manage pain, such as back pain, joint pain, or to prevent pain developing, such as shoulder or neck pain.
A physician is a doctor specialising in medical conditions, such as very high blood pressure or breathing disorders, that don’t need surgery.
Colorectal surgeons specialise in disorders of the lower bowel, ie the colon and rectum. They investigate and treat bowel cancer, and form colostomies. Staff in their clinics often support the assessment and training for trans-anal irrigation, so if you’re interested in this, ask for a referral.
Gastroenterologists are doctors specialising in disorders of the stomach and bowel, such as difficulty absorbing nutrients, and inflammatory bowel disease. People with diarrhoea that persists for weeks may be referred to a gastroenterologist for investigation.
Paediatricians specialise in illness or developmental issues in children. They may help to coordinate the care of children with spina bifida, if they are under several consultants at different hospitals, and in some areas they hold spina bifida clinics. Referral to a Paediatrician can be helpful if you’re concerned about your child’s growth, weight, general and cognitive development, and also if you’re concerned about your child’s head circumference or suspect your child has skin-covered spina bifida.
Occupational Therapists (OTs) are healthcare professionals who support ‘activities of daily living’, such as bathing, dressing and cooking. They can advise on many aspects of independent living, such as housing, adaptations and equipment. They are also trained in the development of skills, and can advise on learning to write, sensory integration, and visuospatial skills. A referral to OTs can be helpful if your child is struggling with coordination or handling noisy environments.
They can be helpful to adults at times when your abilities are changing, to help you find solutions, so you can continue to be independent. Council Social Services departments have Community OTs, and hospitals have OTs to help with rehabilitation, or to ensure you can be discharged in safety and dignity.
Speech and language therapists are health professionals who support the learning and production of speech, and language skills (the way words are used). They are also experts on the movements involved in eating and swallowing, and can work closely with dieticians on swallowing and similar eating issues, such as frequent choking, or difficulties with certain textured foods.
These support people to rebuild functional and cognitive abilities after illness, spinal injuries, head injury or stroke. They usually work as multidisciplinary teams to support people to reach their goals and do things that are important to them, improve their quality of life and independence.
Usually attached to GP surgeries, teams of specialist nurses support people by providing nursing either at home or in community settings. Services they provide include dressing wounds/pressure sores, bowel management, catheter changing and care and fitting compression hosiery for lymphoedema.
TVNs are specialist nurses for the care and healing of skin and tissues. Referrals to them can be made if pressure/moisture wounds were not healing, or any significant wound healing issues. They can advise on the correct equipment to prevent pressure sores, and to promote healing, as well as the type and frequency of dressings needed. They often work closely with the Plastic Surgeons.
Plastic surgeons (not to be confused with cosmetic surgeons) operate on parts of the skin, underlying tissues and bones to repair or reconstruct areas damaged by accidents, illness, pressure etc.
Sometimes referral to Plastic Surgeons is helpful to manage long-term or severe pressure sores and aid wound healing.