Jesy Nelson and Spinal Muscular Atrophy (SMA): Part 2 – What to Do If You Think You Are Facing a Delayed Diagnosis?

By Nikki Ealey

Senior Associate

In Part 1 of this series, we looked at issues that may help you to confirm whether the diagnosis your child has received may be delayed. If you need a reminder, see here for Part 1.

This second part will now look at what sort of things to think about if you do think your child is in that situation.

If as you are seeking treatment and investigation, you are worried that your concerns are not being fully heard or explored, it can be helpful to:

  • Keep detailed notes of symptoms, including changes over time
  • Use photos or videos where appropriate, which can also help log dates
  • Clearly explain why any deterioration is not normal for your child
  • Ask direct questions about what clinicians are considering
  • Request a second opinion or senior review if concerns remain
  • Keep a diary of discussions with the medical team
  • Trust your instincts while maintaining respectful communication

At this stage, these steps help identify whether there may have been a potential issue with diagnosis or management, even if it is not yet clear whether a legal claim exists.

When your child later gets the correct diagnosis and you discover that it may have been delayed all along, you as a family are generally now faced with an overwhelming number of questions. Parents want to understand how their child’s life may be affected, what treatments or support might now be required, and whether the outcome could have been avoided altogether.

I regularly speak with families seeking answers to these questions and help them explore whether a medical negligence claim is appropriate. Where a negligent delay in diagnosis has affected the outcome, compensation cannot undo what has happened. However, it can help fund additional care, treatment, therapies and support that are now required as a result of the delay.

From experience, I have seen the significant difference that early access to the right expert legal and medical team can make, not only to a child’s quality of life but to the wellbeing of the entire family.

And often the first step is to just make contact with a solicitor and start to have that discussion. The earlier you explore the options your child may have, firstly the easier it is to compile the evidence that may be needed to make a successful claim if it does exist, but secondly, it starts the ball rolling faster on the potential funding that may be available to support the treatment and next steps for your child in their diagnosis. And if it turns out that there is not a claim for some reason, then you can take comfort knowing that you explored that option and you have done everything you can.

At Nockolds, that first contact and our initial review of a potential claim does not come with any obligations from you and we do not charge you for it either. But it may just help start to give you the peace and comfort that you need to know what to do next.

If you have been affected by a delayed diagnosis and would like to discuss a potential claim, please reach out to our team on 0345 646 0406 or fill in our online enquiry form and we will be in touch.