NICE guidance – Equal Access to services for those living life with cerebral palsy
Cerebral Palsy is a devastating diagnosis that does not just change the life of the child with Cerebral Palsy but the entire family. Children with Cerebral Palsy have very specific and wide-ranging care needs and although far from perfect the NHS system provides families with much need assistance in providing care.
Cerebral Palsy does not disappear into adulthood and the care needs for adults remain just as complex and extensive however the assistance from the NHS does appear to vanish. The National Institute for Health and Care Excellence (NICE) have recently reviewed the health services available for adults with the condition and have found that services that are available for children simply are not open to adults in many parts of the country. This suddenly leaves families left with a void to fill once those vital services are no longer available. The lack of services then impacts on quality of life for these individuals and puts additional strain on families who have to deal with the day to day consequences.
NICE is responsible for improving outcomes for people using the NHS and other public health and social care services. They try to achieve this goal mainly by developing the guidance and quality standards for care that are used in England but also by ensuring services are equally available across the NHS. In theory, this should mean that all services are equally available across the country and provide the same standard of care. However, NICE has noted that whilst children have access to specialist services designed for their condition and clear care pathways are in place adults do not always have the same experience.
The report emphasised that “many adults with cerebral palsy need ongoing specialist management” and “that this is particularly important for people experiencing change or deterioration in function and when surgical procedures are planned.” Anyone who has been involved with adults with cerebral palsy will appreciate that the care required is very individual and is ever-changing. NICE’s proposal is that once a patient reaches adulthood they are referred to a multi-disciplinary team (MDT) made up of different specialisms experienced in the management of neurological impairments. The MDT would then be the central point for ensuring a holistic and complete assessment of care needs is carried out on a regular basis and more importantly that the care provided and services involved are working together in a coordinated way.
I have had the pleasure of working with Client’s with Cerebral Palsy and their families, experiencing first-hand the level of specialist care and therapy that is required to properly support those living with Cerebral Palsy. Experts in areas such as care, speech and language therapy, accommodation, occupational therapy, assistive technology and physiotherapy are required almost universally to properly assess the care needs of a person with Cerebral Palsy. When dealing with the future care needs of Client’s with Cerebral Palsy we have the benefit of claiming the costs of any care or treatment on a private basis to ensure that where NHS services are not available our Clients can source what is required privately.
I have sadly also seen the immense impact that caring for a child with Cerebral Palsy into adulthood has upon the families providing continuous care. When we are working with clients and their families we can ensure that provisions are put in place to maintain a continuous level of care especially when the parents of people with Cerebral Palsy are advanced in years themselves and cannot provide the level of care that they used to.
Looking into the future I hope that NICE implement the suggestions detailed in their review as soon as possible. It is disappointing to hear that patients living with such a life-changing condition fall out of the system when they reach adulthood whilst their care needs remain just as challenging and ever-changing. In the meantime parents and families of adults with Cerebral Palsy may wish to push for regular reassessment to ensure that services such as physiotherapy, speech and language therapy and occupational therapy are engaged if required to ensure sufferers maintain their highest quality of life.
James Anderson, Solicitor in the Clinical Negligence team at Lime Solicitors