Epilepsy Society welcomes redress scheme for valproate victims but says research is also vital

Dr. Henrietta Hughes, the Patient Safety Commissioner, released The Hughes Report today, urging compensation for all those affected by valproate. Over 20,000 babies in the United Kingdom have suffered from the drug's harmful effects during pregnancy, which often results in 40% of them developing physical and neurological disorders. Additionally, The Hughes Report has highlighted the need for compensation for those adversely impacted by pelvic mesh.

The Hughes Report is urging the Government to adopt a compensation plan that will prove that they have taken into account and acted upon the grievances of families who have dedicated years of hard work to ensure that fairness is served.

This situation requires compensation both in monetary and non-monetary terms. Dr. Hughes proposes a monetary compensation plan that will take place in two phases starting in 2025. The plan should prioritize restoring justice and involve those who have been negatively impacted by the epilepsy medication in the decision-making process.

The suggestions made by Dr. Hughes have been positively acknowledged by the Epilepsy Society. However, they have emphasized the importance of conducting research on alternative medications for epilepsy to prevent a recurrence of similar incidents with other drugs.

In this blog post, we will be discussing the response given by Clare Pelham, who is the Chief Executive of the Epilepsy Society, to The Hughes Report.

The suggestions provided in The Hughes Report are honest, just and were needed for a long time. Dr. Hughes shares similarities with Baroness Cumberlege in her effort to support women who were mistreated due to discrimination by medical professionals.

It is important that we follow Dr Hughes' schedule and take necessary actions to correct the situation immediately. The government should also pay attention to her request for important research to prevent history from repeating itself. It is crucial to prevent a recurring pattern of harm followed by compensation. We cannot afford to repeat this cycle with other epilepsy medications that may pose a risk to pregnant women.

It is unacceptable for babies to continue to be born with preventable disabilities. Any politician who considers compensation for the damage caused by sodium valproate as a final solution is not wise.

Families who have put in a lot of effort to promote awareness about sodium valproate have not just done it for their own benefit but for the benefit of generations to come. They have been unwavering in their resolve to make sure that in the future, other people's lives are not ruined in the same way that theirs have been for the past fifty years.

Starting from 2021, The Safe Mum Safe Baby campaign by the Epilepsy Society has been urging the government to allocate funds for significant genomic research, which can identify which anti-seizure medicines are secure for women during pregnancy. This research would help in decreasing the possibilities of babies being born with avoidable disabilities. Moreover, it would become a permanent legacy for women who have been working for justice throughout their lives.

They should be remembered and commemorated. They should have a lasting heritage.

The report from Dr Hughes supports our plea to the government to establish exclusive funds for research in order to comprehend the underlying reasons behind the increased danger of anti-seizure drugs to the developing foetus. By allocating funds specifically for epilepsy research, it would serve as a meaningful and impactful contribution that generations of families would appreciate.

For years, women with epilepsy have been advocating for their cause. Recently, their emotional pleas have been substantiated by factual evidence. The Epilepsy Society hired OHE to conduct a study, which disclosed the high expenses associated with a lifelong disability in babies affected by epilepsy medication. According to the report, the costs vary from £2.5 million in severe Autism Spectrum Disorder cases to £124,000 for children born with Attention Deficit Hyperactivity Disorder.

You don't need to be a math whiz to realize that investing in research now would not only lead to better health results for future generations but also save the government money.

Compensating for the harm caused will be expensive and cause financial strain. However, women and their loved ones have suffered for many years, and implementing the suggestions outlined in the Hughes report will help make things right, at least in terms of finances. Now, it's crucial that our government takes action to prevent future incidents like the valproate scandal. We must break the current cycle, which involves harm followed by compensation, and replace it with a cycle focused on research that leads to preventing harm in the first place. This will result in babies being born healthy and happy.

A decade from now, we shouldn't regret not taking action to protect the next generation. Instead, we should proudly declare that innovative and groundbreaking research has improved the well-being of babies and ensured the safety of pregnant women. It's within our capacity to do so, and therefore, we have a responsibility to act. If not, politicians will be partly accountable for the harm that could befall mothers and their infants due to their inaction.