Trust did not explain the implications of terminal genetically inherited illness to patient and her family

What happened

Mrs W was diagnosed with Huntingdon's disease. When the Trust gave her husband her diagnosis, staff merely told him about it and gave him a print of a webpage about the disease.

Mr W asked for a meeting with a suitably qualified clinician to explain the progression of the disease, the prognosis and also the genetic implications for Mrs W's children. The Trust did not organise this for several months. Mr W was forced to seek the information he and his family needed from another trust after his GP referred him for a second opinion.

When Mr W complained to the Trust, it did not initially accept that its communication was flawed. Instead, it insisted that it provided a consultancy‑only service to the satellite hospital Mrs W had been admitted to, and therefore was not responsible for explaining the diagnosis. Mr W had to write to the Trust five times before it acknowledged its failings.

What we found

We found that the Trust had eventually recognised the flaws in its communication with Mr W after Mrs W's diagnosis, and during the complaint handling process. However, we could not see what action it had taken to address this.

Putting it right

Following our report, the Trust acknowledged and apologised for its failings. It put together an action plan that showed learning from its mistakes so that they would not happen again.

It also paid Mr W £250 in recognition of its poor handling of his complaint.