Over the past month I have been asking people with growth hormone deficiency to tell their heart-wrenching stories to the NHS – about their long years of non-diagnosis and the medical scepticism about their symptoms, their suicidal feelings and attempts – and to urge that the A-Z of Health Conditions should at least contain a mention of this life-destroying condition, alongside such trivial complaints as they do include, like ingrown toenails. At least ten people wrote, eloquently, and I can’t thank them enough. Ged Flynn of Papyrus and Luke Griggs of Headway also wrote.
For those breathlessly waiting to see the NHS reply, here it is:
Regarding your case CSxxxxxxx, we have provided the below resolution.
Proposed resolution:
Thank you for your feedback.
We do not currently have topics in our Health A-Z on Growth hormone deficiency and hypopituitarism.
We will pass your feedback to the content team so they can log it. However we cannot guarantee if or when we will be able to create information on these specific topics.
The NHS website is not intended (or able) to have content about all possible medical issues, treatments and services. Before we add new content, we must consider:
1. User needs – we need to understand issues such as how common the issue is, whether (and where) people are looking for information about it, what specific information people need and what practical, actionable advice we could offer.
2. Clinical and policy guidance – we would need to align with any existing clinical or policy guidance on the issue, and we would need to base our content on reliable, evidence-based source material.
3. Resources – we need to weigh the resources needed to complete the work against the resources needed to deliver other website prioritiesWe appreciate this will be disappointing but please rest assured that your request has been noted.
We’re grateful for the feedback – it is valuable to know what information our users are looking for.
Kind regards
The NHS website content team
I hope you’ve read that carefully . . .
So, they’re saying this isn’t common? When it happens after a sixth of concussions and there are roughly 900,000 of these a year in the UK?
They’re implying nobody’s interested? Well, there were 23,000 people diagnosed with hypopituitarism in 2023-2024, and some of those might be.
As for ‘reliable evidence-based source material’ . . . what is NICE TA64 if not that?
But the most pathetic, and I think most wicked, excuse is ‘resources needed’. According to Samaritans the average suicide costs the UK £1.46 million a year. Wouldn’t it be worth spending a bit to inform people properly and help to reduce that terrible figure?