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Feedback needed from parents of children with CP in the West Midlands

(1 Post)
Jo78 Thu 08-Sep-16 21:09:45

In order to improve NHS services and experiences for families, your feedback is needed.

Partners in Paediatrics (PiP) is an NHS organisation that aims to improve the quality of services for children and young people across the West Midlands region. One of the projects PiP is developing is the Cerebral Palsy & Spasticity Network (CPSN). The Network aims to develop a standardised approach to the treatment of children and young people with CP and to reduce the variations of care and provision which currently exist.

The CPSN is organising a Study Day, later in the year for staff. They would like to ensure that the views of parents of, as well as children and young people with CP are taken into account.

In order to this, I am collating views - to be presented at the Study Day.

Your views are incredibly valuable and give huge insight on how to make care and services better. Please can you tell us the things you would like healthcare professionals to know about your child with cerebral palsy, that cause the most difficulty/are the greatest challenges. Also your ‘top tips’ to make things better would also be greatly received. Healthcare professionals could mean: surgeons, paediatricians, community nurses, physios, OTs, orthotists - anyone with an input to your child’s health.

These will then be collated and the main issues presented at the study day. This is the start of a bigger project and I am sure that there will be opportunities for parents and young people to input directly to further on.

If you are happy to share, please comment here, or alternatively message me directly or email that would be great. Please share with anyone else you know whose child is under 25 and has a diagnosis of cerebral palsy, or to young people themselves.

Thank you


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