The National Institute for Health and Care Excellence (NICE) has published a draft quality standard on cerebral palsy in adults, for public consultation.
The organisation announced that the draft standard consists of five statements, which together highlight what needs to be done to ensure adults with cerebral palsy can be “as independent as possible and have equal access to every available opportunity.”
The guidance states that adults with the disorder whose ability to carry out usual daily activities deteriorates or who may be affected by a procedure that is being considered, are to be referred to a multidisciplinary team (MDT).
This is because an MDT, experienced in the management of neurological impairments, is better able to identify a person’s needs and understand how these may change over time than non-specialist healthcare professionals.
The guidance also states that the teams are able to advise on specialist treatment options (such as neurosurgical or orthopaedic procedures for dystonia and spasticity), and the possible impact these might have on the person’s abilities.
In 2018 NICE set out an initial guidance for cerebral palsy, focusing on interventions for adults with the condition – for example the use of augmentative and alternative communications systems to help improve communications skills – as previous guidelines largely address problems faced by children and young people.
The guideline set out that specialist services should develop pathways that allow adults with cerebral palsy access to a local network of care, barriers to accessing primary and secondary care should be address, and adults should be provided with information about national screening services.
The new draft quality standard also highlights that, because the care and support needs of adults with the condition may change over time, an annual review assessing their clinical and functional needs and making sure these are being met, as well as checking for other health issues, should be provided.
Cerebral palsy is the name for a group of lifelong conditions that affect movement and co-ordination. Caused by a problem with the brain while it is still developing, it is the most common cause of physical disability in children and young people in the developed world.