Cerebral palsy sufferers face postcode treatment lottery, say Sunderland researchers

ALARMING VARIATIONS ... Dr Karen Horridge, consultant disability paediatrician at City Hospitals Sunderland NHS Foundation Trust.
ALARMING VARIATIONS ... Dr Karen Horridge, consultant disability paediatrician at City Hospitals Sunderland NHS Foundation Trust.
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CHILDREN suffering from cerebral palsy are facing a “postcode lottery” in terms of the treatment they get, according to a study by medics at Sunderland Royal Hospital.

The study, led by researchers at City Hospitals Sunderland NHS Foundation Trust and Newcastle University, found stark variation between geographical areas across standards for the care of children with the condition, including use of MRI brain scans, access to surgical expertise, and monitoring of pain.

To avoid this kind of “post-code lottery”, we urgently need the development of national and international guidelines, and for those guidelines to be backed-up by policy

Dr Karen Horridge

Examining the records of 389 children and young people with cerebral palsies who were born in the north of England, the researchers found that over a third of children never received an MRI brain scan, which is important for understanding the cause and prognosis of the cerebral palsy.

Although MRI provision did improve over time, the difference between districts was dramatic, with over 90 per cent receiving an MRI in the best performing area, compared with less than 10 per cent in the worst performing one.

Similar disparities were observed in the management of pain, which is known to be an especially important influence of quality of life for children with cerebral palsies.

Overall, a third of children had no record of being asked whether they were experiencing pain, but this ranged from all children having a documented discussion about pain – in the best performing area - to just one-in-five children having a documented discussion about pain – in the worst performing one.

The study, published in Developmental Medicine and Child Neurology today, also examined whether children and young people from deprived communities received poorer care than their more advantaged counterparts and found, among other things, that they were less likely to have had a documented discussion about their levels of pain.

Lead researcher Dr Karen Horridge, consultant disability paediatrician at City Hospitals Sunderland NHS Foundation Trust, said: “There are always going to be areas of better practice and areas where there’s room for improvement, but these findings show really alarming levels of variation across a range of factors.

“We looked at a number of key standards of care, and found that many children were missing out simply because of where they lived.

“Every disabled child deserves the best opportunity for the best outcomes, but that doesn’t seem to be what was happening, at least not for children with cerebral palsies at the time of our study.

“No child should be left in pain.

“We clinicians and therapists must proactively ask about it at every consultation and where present, make robust pain management plans.

“To avoid this kind of “post-code lottery”, we urgently need the development of national and international guidelines, and for those guidelines to be backed-up by policy.”

A breakdown of the results has already been shared with healthcare staff working in each of the study areas, so they can compare their own practice to that in other areas.

It is hoped it will lead to discussions which will result in improved care.