Comment

Halt to funding for chest deformity surgery is a cruel blow

Specialist children's nurse Cheryl Honeyman says ending funding for surgery on chest deformities in young people is wrong and calls for more research

Specialist children's nurse Cheryl Honeyman says ending funding for surgery on chest deformities in young people is wrong and calls for more research

Picture shows a young male with pectus excavatum, in which the chest sinks inwards. Specialist nurse Cheryl Honeyman says the end of funding for surgery on chest deformities in young people is wrong and calls for more research
Picture: Science Photo Library

We have discharged the last patient from The James Cook University Hospital in Middlesbrough after surgery to correct a chest deformity. Sadly, NHS England clinical commissioners have removed funding for the service unless there are exceptional circumstances affecting heart or lung function, when individual funding requests can be made.

Chest deformities such as pectus carinatum, in which the chest sticks out, and pectus excavatum, when the chest sinks inwards, can be surgically corrected. The National Institute for Health and Care Excellence (NICE) has guidelines for this surgery dating from 2009.

Although it is major thoracic surgery, young people recover well from it and once healed are able to lead active lives with no restrictions. There are 29 NHS trusts in England with specialist pectus teams.

Surgery should not be undertaken without full consideration of risks and benefits

In South Tees, the paediatric service was set up in 2016 and we have developed an effective and efficient service with comprehensive guidelines, information leaflets and communication strategies to keep young people and their families fully informed.

No surgery should be undertaken without full consideration of risks and benefits, and our patients are thoroughly assessed for suitability for surgery by the consultant surgeon, specialist paediatric anaesthetist and specialist nurse.

The impact of a chest deformity on a young person’s life is the primary consideration for surgery and we are fully aware of the effect of having the deformity – some young people say they never take off their top in front of others and refuse to go swimming, even on holiday.

Potential effects on long-term mental health

Some deformities are so pronounced that they can be seen through clothing, so bulky clothes are worn, even in hot weather. Young people may not go out with friends, try to hide during physical education classes at school and often become withdrawn, with low self-esteem.

As Mental Health Foundation research shows the correlation between body image and mental health is well documented. The issues that arise due to an obvious deformity affecting young people could go on to affect their adult life, including work and relationships.

It also has the potential to affect long-term mental health. Given that this is a focus area for policy at present, to remove the chance for many to lead a normal, fulfilled life, therefore putting them at risk of mental and psychological disturbance, seems cruel and short-sighted.

Evidence should not only be purely academic

Post-surgery, young people and their families report a total change in their lives. One parent said: ‘He just keeps flashing his chest to anyone.’ Such findings are anecdotal but this matters and evidence should not only be purely academic.

The decision to stop funding the service has been based on flawed and mostly non-UK-based research. There was a consultation, but there is no evidence that young people were involved in the decision-making process.

There is, however, evidence of literature being misinterpreted, for example, improvements in shortness of breath was measured for all patients, and not those who reported this pre-operatively, which locally is 20% of all patients with pectus excavatum.

A successful and life-changing service is being lost

When, as in this case, the body of research is not considered robust, surely a successful service should not be decommissioned, but instead more research should be initiated.

It is true that there is a need for better research, but withdrawing the service from the NHS in England has removed any opportunity to do this, and a successful and life-changing service is being lost.

NHS England was approached for a comment for this article but has not provided one. However in its policy document it states: ‘The evidence that was found is not sufficient to conclude that the physical, psychological, social and behavioural benefits of surgical treatment of pectus deformities are sufficient to justify its use.’


Picture of Cheryl Honeyman, a specialist paediatric spine and pectus disorders nurse at James Cook University Hospital, Middlesbrough. She says the end of funding for surgery on chest deformities in young people is based on flawed research.Cheryl Honeyman is a specialist paediatric spine and pectus disorders nurse at The James Cook University Hospital, Middlesbrough

 


References

This article is for subscribers only

Jobs