Hello and Thank you for getting in touch.

I’m so very sorry to hear about the death of your son. Losing him so quickly, and with so many unanswered questions, must be incredibly painful.

You’ve raised important concerns about how his symptoms were interpreted, and about access to investigations such as endoscopy for people with learning disabilities. Sadly, cancers that first present with bone pain can be very difficult to identify early, and I can appreciate how frustrating and distressing this must feel.

People with learning disabilities can often face inequalities in accessing timely assessments and investigations. This is well recognised within the NHS, and there is ongoing work to improve cancer pathways for this group. We have an article on our website called Piecing together the puzzle of cancer inequalities, which explores this in more detail. Your experience shows just how vital this work continues to be.

While long‑term epilepsy and thyroid medications can have side effects, they are not known to cause ulcers or directly lead to cancer. I can completely understand why you would question this, especially when everything happened so suddenly.

Although this took place in 2023, I wondered whether you had the chance to talk things through with your son’s doctors or whether his GP could help go over what happened. Sometimes understanding the medical events a little more clearly can offer some reassurance.

If it would help, please do get back in touch with us. You’re also welcome to speak with one of our nurses on the helpline if you’d prefer to talk. We’re here Monday to Friday, 9am to 5pm, on 0808 800 4040 (freephone)

Jemma