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NICE seeks stakeholder views for consultation on cerebral palsy NHS care


    Kerstin Kubiak considers important new guidance being developed by NICE for those patients who have, or who should have, a diagnosis of cerebral palsy.

    By Kerstin Kubiak

The National Institute for Health and Care Excellence (NICE) has launched a consultation seeking views from stakeholders on new guidelines to deal with the diagnosis, assessment and management of cerebral palsy in children and young people from birth up to their 25th birthday. The consultation ends on 20 September 2016 and the new Guidance is anticipated for publication by January 2017.

A number of stakeholders are being invited to give their opinion and feedback on the proposed new guidance. Stakeholders must be registered with NICE in order to be eligible to give feedback; the list of eligible stakeholders is long but primarily includes: organisations providing health and social care services, medical related companies, those who commission care services (private and public sector) and local or regional groups representing people or those who work in or use health and social care services when there is no national organisation which deals with those specific interests.

What is the new guidance looking at?

The new guidance is designed to ensure health care and social care professionals are alert to the need to ensure cerebral palsy is diagnosed as early as possible and that once it is diagnosed professionals are aware of the potential complications that can occur and treatment requirements of the condition to maximise the health and wellbeing of the patient.

Some of the key areas included within the proposed Guidance are:

  • Looking for signs of cerebral palsy;
  • Red flags for other neurological disorder;
  • Early multidisciplinary care;
  • Information and support;
  • Information about prognosis;
  • Eating, drinking and swallowing difficulties;
  • Speech, language and communication;
  • Optimising nutritional status;
  • Managing saliva control;
  • Bone mineral density;
  • Pain, distress and discomfort;
  • Sleep disturbances;
  • Mental health problems;
  • Sensory and perceptual difficulties;
  • Information on other comorbidities;
  • Care needs;
  • Transition to adults’ services

Why are formal guidelines needed?

My colleagues and I in the clinical negligence team frequently hear from our clients how much they struggle with accessing proper or adequate NHS assessments and services for themselves or for their child. My colleague also wrote yesterday about the recent research by Action Cerebral Palsy which confirmed that there seems to be a huge variation in the availability and quality of services available for children and young adults with cerebral palsy across England.

Life with a disability or disabled child is difficult enough without having to fight for local services to provide much needed support and services. In my experience one of the most deficit areas of support lies with the transition of care from paediatric to adult services and it’s great to see this being addressed in the review.

It’s hoped that this review will aid in removing the barriers to accessing help and once that help is received to ensuring it’s of a quality and consistent standard wherever it is provided.

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